Check-in for those not yet diagnosed

[cricket52]

Until Barb or Kris and the gang find us and pick up where we left off, I am going to be so bold as to start this thread.

How was your summer?

I think I finally realized that whatever this is (still possible MS), it's not going to go away - ever. The heat made my spasticity worse so I increased my Baclofen. In the past 7 months I have had six different viral-type illnesses, which is fine, we all get bugs, but after the two where I had fevers I had some major MS-type symptoms.

I also had my roto-router (sp?) aka colonoscopy. I should have bought a lottery ticket that day. 4/5 people sleep through it. I was wide awake. Less than 1% experience hypoxia. I dropped below 90 and they had to abort.

17% of colonoscopies can't be completed, mine wasn't because of the hypoxia and because she ran out of scope - long tortuous redundant colon.

Three out three - yep - good lottery day. When your colonscopy has to be aborted they do a barium enema right away. I warned them I would be incontinent, and I was, I spewed barium all over the place. The best thing about the day was the barium enema triggered the symptoms of fainting and vomiting, so at least I got my GI referral, not from my PCP who refused three times to send me, but from my MS specialist who didn't hesitate.

So all in all, things are good. I take each day as it comes. I really hope the rest of you are doing well.

Looking forward to hearing from you. Oh - welcome back Whisper!

[elle]

Hi Cricket-

Yikes about the colonoscopy- what a pain in the arse... :p Are they planning to reschedule? Or was the barium sufficient? Barium tastes awful! I am so sorry you had a rotten day.

I'm still around. Trying to decide now at what point I call the doc back and say "hey, things are worse!" It seems like all my symptoms get a whole lot worse and I decide to definitely call, then they get a little better, and they are managable, so I feel silly calling! I made a promise to myself a month ago that I would seek help BEFORE I was so bad I couldn't walk, dress myself etc. But I don't want to seem like a hypochondriac either, KWIM? But when I am exhausted, it's really bad.

To make matters worse, I broke a toe last week :rolleyes: This is the third toe I have broken this year, so if I wasn't walking funny before, I surely am now! :D

[cricket52]

Hi Elle:

Sorry about the broken toe - been there done that. You have a great sense of humour about it though. :) :) My family still laughs about the time I dropped a frozen turkey on my foot and broke my toes. Darn turkey was about 40lbs.

Don't need to reschedule colonoscopy, nothing is really wrong other than the pain, vomiting, constipation and fainting. I think it's a motility problem (I have a neurogenic bladder - retention) and it comes and goes with the other symptoms. The MS clinic put me on a bowel regimine with enemas and it seems to help. I just want a gastro to confirm it. I'm tired of my PCP not believing me. He tends to ignore my MS neuro's recommendations and I hate fighting for medical care.

Somewhere online I found the MSIS-29 (Multiple Sclerosis Impact Scale 29). While we are not dx'd yet, it might be a guide for you to help you keep track of your symptoms so you can give the copies to your neuro when you see him/her.

I'll try and find it and post it for you. Great to see you here.

[cricket52]

Ah ha - I found the link. I was able to print out a copy for myself. It's important that I reference the source because of copyright laws.

http://www.ncchta.org/fullmono/mon809.pdf#search=%22MSIS-29%20copy%22

J.C. Hobart, A. Riazi, D.L. Lamping, R. Fitzpatrick, A.J. Thompson

Improving the evaluation of therapeutic interventions in multiple sclerosis: Development of a patient-based measure of outcome.

It is PDF format, the Scale is on page 57, 58. The 129 question version is also in the article.

If I haven't sourced this correctly someone will correct me I'm sure - at least I hope so.

I saved a couple of articles on brain atrophy in MS for those of us who have yet to show lesions and have symptoms. I'll post them sometime soon. Can't help but think that some of us in limboland may be part of the 5% of MS'ers who never show lesions. Some of the limbolanders are really having a rough time of it and don't have a dx of anything. It's got to be frustrating. Even more upsetting are the ones who were dx'd with MS and then had the dx recinded. That just doesn't make sense when they don't have an alternative dx, they just continue to suffer.

[Teddy]

Hi Cricket and Elle!

I'm now officially a Limbolander again. You might remember me from BT2 - I was diagnosed PPMS Oct last year and undiagnosed earlier this year. During that time I have, of course, worsened but now nobody can tell me what's wrong.

The neuro who diagnosed me PPMS told me at the time that PPMS was the diagnosis, even though I only have one brain lesion and a "suspicious patch" on my cervical spine, but that I may never show lesions. Then he rescinded the diagnosis, for reasons he didn't feel fit to explain to me. :rolleyes:

My most troublesome symptom is my walking. It's pretty significantly impaired, to the point that I need a wheelchair or scooter to go outside the house and a rollator around the house. I try and take it one day at a time, do physio etc, and am now back to seeing my original neurologist who originally said probable MS. He thinks it still is MS, but just not showing itself as yet.

My opinion is that the 5% no-lesion figure is in all probability, much underestimated. My symptoms most decidedly walk and talk like an MS duck (especially the duck walking! :D ), right down to L'hermitte's sign and heat-induced weakness (and it's starting to get hot here, I live in Australia :eek: )and MS-like cognitive dysfunction (had neuropsych test, pysch said I wouldn't rule out MS if I were you!!). My feeling is that unless I show lesions, I will never be diagnosed. Not that I want to be, of course, but that does frustrate me, because the way I am, things are getting to the point where I need to make home modifications and if I don't get a diagnosis, I won't be able to access Total & Permanent Disability funds which would enable me to do this. I am very lucky to have salary insurance which pays me 75% of my wage because I can't work any more, but it does mean we're 25% down in finances which isn't ideal for anyone!

Well, enough of my ranting and raving! It's so nice to know that I'm not alone.

[pals1107]

Morning all, it's so nice to be back. Still the same old, same old. I'm off to the Cleveland clinic in 7 days. I hope I get some answers there! They have me set up so far with a neuro, ophtho, and a internal medicine doctor.

I've been battleing for a month now trying to get my hemo records to send to the CC, so far I haven't gotten a scrap of paper, this shouldn't be this hard to get your own records. I just don't get it. The hemo doesn't tell me anything about why my blood is so abnormal, what is he keeping from me?

I'm in the market for a new PCP at the advice of my councilor, her words, "dump him". He told her that I was crazy and severly depressed and making things up and that there is nothing wrong with me. She said you have every right to be depressed but I just don't see it. **** I spent more time with her in two visits than all the time I have had him as my doctor, I would think she knows me better.

She feels that somewhere along the line I have been flagged as a phyco, and this is going to follow me. She said I am remarkedly upbeat and calm about all this, she would be sueing or going postal on someone by now. She said that allot of doctors mistake pain and fatigue for depression, and of course when you go to a doctor you aren't at your best, that is why you are going to a doctor for heavens sake! They see the "sick" part not your normal life. Good points in my opinion, know what does one do to make the medical profession realize this?
I know I have ranted and vented here to no end, but this is where I do that so I can remain calm in the real world. You all have the pleasure to see the worst of me when I bounce my thoughts out there in cyber space.

Again thanks to all of you out there in limbo land, I imagine at least one of you knows where I am coming from.
Huggs to all,
Pat

[cricket52]

Hi Teddy and pals:

Teddy: You were one of the people I was referring to when I was talking about having a dx recinded. I can't imagine how hard that must be. It's got to be worse than not having a dx, it's easier to face an enemy we see than one we can't find.

I wish I knew how they dx the MS patients who don't show lesions. Do they get the criteria from the evoked potentials/LP's and clinical signs and history? The fact that our symptoms continue to progress doesn't make for a good quality of life.

You are heading into summer. The heat isn't going to make your life any nicer. :(

pals!!

Hi there - great to see you again.

Your counsellor is right. Your PCP has sabotaged your care by labelling you. Mine did too. I have learned to work around him, he is a great PCP, but when it comes to something outside his primary care concerns he balks. My psychiatrist told him point blank, as did my physio, that the symptoms were physical in origin and he still didn't become proactive. I hope you can find a PCP on the other side of town who doesn't communicate with your PCP and will give you a fresh start.

As for your symptoms, we believe you here, we always have. Of course you are angry. I have days when my anger overrides my judgement. This is a safe place to vent. :)

Welcome home pals.

And welcome to you Teddy.

[elle]

Thanks for the link Cricket! Motility issues can be really hard to diagnose, but cause so many problems in the interim.

Teddy: Glad to see you here! It is so freaking frustrating to have your life activities severely compromised (ie; not walking!) and not have anyone be able to tell you why. Two years ago, I had to take my own initiative to buy a walking aid, and when I showed up in the doc's office using a cane, he was surprised. Um, right so I was just going to sit at home and waste away? No! I still have to live my life- even if my buttons are mis-matched and I can't tie my shoelaces ;) . How frustrating to have a recinded diagnosis. Not that any of us WANT a terrible doagnosis, but it sure makes getting meds easier. Not to mention it's awfully hard to come to terms with something if you don't know what that something is, or what that something is going to do to you in the next five years...

Hi Pals! I think I was labelled as psycho too. I was so desperate to find answers 2 years ago when all this started that I panicked, ran in all directions, called the doc at every new symptom. But I was so scared- no one would tell me ANYthing- and at no point while I was symptomatic did any daoctor say, "well it can take YEARS to figure some of this neuro stuff out, in the meantime, let's treat your symptoms." I just got shrugs, blank looks, and "maybe it's anxiety?" Right, because when you suddenly lose 90% of the function of your legs, when you shake so bad you can't write, when you can no longer dress yourself or eat with a fork, when you have to quit work but still pay bills and you have no idea what's wrong with you- that's no reason to be depressed or get a little anxious? :rolleyes:

I agree with your counsellor- if your PCP is not helping, dump him! I decided to find a new PCP myself this month, when symptoms started back up. I am glad I did. When I told him how things went the first time around- normal labs, abnormal exams, "maybe it's anxiety"- he seemed genuinely concerned. The last thing he said to me was "don't let anyone tell you this is all in your head- it's obvious to me that you do have deficits and they are impairing function" :eek: Just that little bit has made me feel like I shouldn't be ashamed that I am having problems. It has helped me to stay calm and just take things one day at a time. I hope you find answers at the Cleveland clinic- or at least some symptomatic relief!

[Teddy]

Hi Elle, you're right, it is incredibly frustrating. At times I cope well, and at other times I wish I could do a Freaky Friday-style life swap with my neuro just so he KNOWS how I feel, and has to drag himself around for the day exhausted and stumbling and dizzy and having to rush to the damn toilet every 10 minutes or so!!! It took me a while to come to terms with the idea of getting a wheelchair to go out in (I just wasn't going out because it was just too hard - and dangerous!), but eventually my MS Society physio landed on the doorstep of my house with a chair and strict instructions to USE IT!! She's bossy but lovely - I wouldn't have done it without her. But when I did - what a difference!

Hi Cricket, the rescission of my diagnosis was a very confusing time. On the one hand I was happy they were telling me I didn't have PPMS, but on the other hand, I don't believe it because my symptoms and signs are just SO MS it's not funny, and the fact is that I still have symptoms and can barely walk. There's nothing else they can find. B12, all other blood work fine, nothing structural, nothing at all.

I see that you saw Lady Express's link on the other board to the study about the visibility of lesions at autopsy vs MRI. Food for thought when one sees that MRI could only visualise 5% of intracortical lesions, and that the best results MRI could get was still just 71% of the white matter lesions. That's still a pretty significant number which MRI can't visualise.

Hope everyone's feeling well, thankfully today's not too hot so at least I'm not a puddle of jelly on a chair! :D Oh dear, I'm not looking forward to summer...

[cyclingzealot]

How was your summer?

Hi all. Semi old timer here who hasn't been around in awhile. I was contacted by my neuro's office recently to schedule a follow up. So I mde my appt and am thinking about how things have transpired over the past year. Things haven't been too bad. I had one big 'relapse' over the summer. At my wife's urging, I had to give in and buy a cane. Glad I did. It really does help me when my balance is off or when my legs decide not to work right. But I don't use it that often.

The memory issues are kinda the same. Good days and bad days. Pain is the same. People often comment on my lack of coordination, but hey, I still can still kick butt.... :)

Oh well, mind is all over the place today. Here's hoping today has greeted you all well.
Peace.

[cricket52]

Hi cyclingzealot:

Nice to see you again - welcome back!

The cane thing is a challenge. Yes it works and yes we should use it more often than we do. I think we tend to overestimate our balance and/or strength.

Besides, it makes me feel old. The nice thing is people do give me some room and I get the best seats on the bus when I do use it. It also qualified me for a reduced bus pass. :)

Glad your year hasn't been too trying. Let us know what your neuro has to say, hope it's good news.

[cyclingzealot]

Hi cyclingzealot:

Nice to see you again - welcome back!

Thanks Cricket. :)

The cane thing is a challenge. Yes it works and yes we should use it more often than we do. I think we tend to overestimate our balance and/or strength.

I'm working on accepting that at the least, I am gettign older and don't have the same abilities I used to... But I dont' use the cane unless I feel I really need it. ;)



Besides, it makes me feel old. The nice thing is people do give me some room and I get the best seats on the bus when I do use it. It also qualified me for a reduced bus pass. :)

:) Making lemonade!!! I love it!

Glad your year hasn't been too trying. Let us know what your neuro has to say, hope it's good news.

Thanks, I will. I don't expect anything different than I already know - which isn't much...

You said earlier concerning yourself:

nothing is really wrong other than the pain, vomiting, constipation and fainting

Is the pain you refer to abdominal?

[cricket52]

Hi CZ:

Yep - bowel related. I do have a neurogenic bladder - retention, which is why I think it's a neurogenic bowel thing. Three years ago I started with nausea, fainting (I did land on the floor once, now I know it's coming so I grab onto something), major pain which eventually leads to vomiting. If I can't pass stool (which is usually the case) the vomiting eventually relieves the pressure and I recover. If someone is with me they usually want to call an ambulance, my colour kinda drains and I am really in pain. I won't go in an ambulance, I seriously doubt I would be able to handle that level of pain bouncing around the back of the truck without yelping and puking. I prefer to sit on the throne and hang on to the towel rack - alone.

I have learned to grab an enema the second it hits. Trouble is, I often have retention problems and the enema tends to squirt back out.

This is really embarrasing. I was at the mall the other day after giving myself an enema earlier in the day when I felt something wet run down my leg. It was bowel incontinence, somehow I hadn't passed everything. I headed for the nearest washroom and then home.

Just when I thought it was safe to come out of the bathroom....

And still no dx. My PCP says Irritable Bowel Syndrome. Good grief, I am 54. If it were IBS why didn't I have it years ago when I was stressed and busy?

[cyclingzealot]

And still no dx. My PCP says Irritable Bowel Syndrome. Good grief, I am 54. If it were IBS why didn't I have it years ago when I was stressed and busy?

How far beyond your PCP have you gone? Forgive me if I should remember, but you have seen a neuro and/or a gastroenterologist concenring this, right?

The abdominal pain and the neurological pain can also be symptomatic of Porphyria. But I don't think and enema would relieve a porphyric attack.

[cricket52]

Hi CZ:

Over the past year and a half I asked my PCP three times for a GI referral. His response (3 times) was "why - what's he going to do for you?"

My PCP prescribed fibre and senekot after my first episode. The fibre made things worse. I called the MS clinic in Ottawa, they got back to me within the 1/2 hour and gave me a thorough explanation of a good bowel regimen, including stopping the fibre. I am trying really hard to train my bowel, sometimes it works, sometimes it doesn't. Sometimes I am 'normal', other times my bowel shuts down and the 'attacks' hit. During those times I may go 5 or more days without a bm or bowel sounds. My last bout started in August and ended the following January. Now that I can control the pain by using enemas I feel at least I have a handle on it. The pain was brutal.

My MS neuro offered to refer me to a GI specialist in Ottawa because of the incontinence, but I can't get a northern travel grant because we have a GI person in our town. OHIP won't pay for it. I can't afford the trip to Ottawa more than once or twice a year, it's a five hour drive.

However, since my PCP had insisted on a colonoscopy I went to the surgeon, waited a year to get the colonoscopy and wasted my time. (I posted about that experience earlier-I should have bought a lottery ticket that day :D ) My BE's show long tortuous colon and redundancy. So - whose doesn't? Nothing I didn't already know.

So I went to the GI specialists office and begged for an appointment. I offered to pay. Of course they don't do that, we have government-paid health care and 99% of specialists will only take a referral from your PCP or other specialist.

I called the MS nurse in Ottawa, who promptly told my neuro. Within an hour they had faxed a referral to the GI specialist in town here. I only have to wait another 8 months. I have no plans on letting my PCP know I am going. If it is a neurogenic bowel thing, then I will give him a copy of the letter. If it is IBS, then I'll learn to live with it. From what I have read, vasovagal responses and vomiting are not usually normal with IBS though. I started Baclofen in January - it actually seems to have helped a bit.

However, as I've said before, I am not a doctor, I just play one online (for myself that is). So I will look up porphyria.

Two years after my first bout of oscillopsia (I was 24), at age 26 I was hospitalized with delayed gastric emptying. Of course I was told it was stress and anxiety. Over the years I have had similar bouts with bowel slowdowns and gastric motility problems, but nothing like the past three years. The past four years have been nasty - visual problems, spasticity, pain, fatigue, yada yada yada.

You have been a great help CZ. Thanks for listening. :)

[Teddy]

Hi Cyclingzealot!

Cricket, you've probably explained this before and have reasons why you can't so sorry if so! But can you not get a new PCP who's a bit more sensitive to what's going on with you? Yours sounds like a complete @($*%(@. :mad: I can't believe he's such an arrogant @($&%*.

Teddy, who's obviously in a swearing frame of mind!!

[cricket52]

Hi Teddy:

I live in a northern town of 53,000. 7,000 don't have a family doctor. There is a severe doctor shortage in Canada.

The average wait time in ER is 7 hours (you should hear the horror stories). The walk-in clinics are only open a few hours in the evening and there are long line ups. The nearest teaching hospital (tertiary care) is 4 hours away, which is problematic - it snows a lot up here and the weather can change on a dime.

My PCP is a bit arrogant. However, I have a daughter with Coffin-Lowry syndrome and five grandchildren with the same disorder. I adopted the one grandaughter (she is 11 now) and he is amazing with her. He also took on my daughter after her 4 year search for a family physician.

When my optician referred me to the Ottawa Eye clinic and they referred me to the MS clinic it was a lifeline. My quality of life went from 10% to 90% with the symptomatic treatment. While my PCP may not like what my neuro says or follow her recommendations, I work around him. I think I wrote the book on passive-aggressive, like the time he told me he golfed with my psychiatrist. I asked my psychiatrist (who believed I wasn't crazy, the symptoms were real) to intervene. Sure enough, when they were on the links, my PCP asked him in the course of conversation "what is her problem?" My psychiatrist just smiled sweetly and said "she's one of a kind". Nicest compliment I ever had.

When I had a meltdown and was hospitalized on the psych ward my PCP visited me twice on a bad day. He isn't a bad sort, just overworked and not to sure how to deal with a crazy lady with neuro problems. :D

He hates it when I ask for copies of my medical reports. Of course I make a point of asking every visit.

I hopped on the scale my last visit, commented on a good weight loss (20 lbs) and when he looked surprised and asked me if I was trying to lose weight I replied "nope" and changed the subject. I love the look on his face when I do stuff like that. If he really noticed he would remember that he had just written out a prescription for Amantadine (for fatigue), one of it's main side-effects is appetite suppression. lol Of course I lost weight and I hope to lose more.

Like I have said many times, we are our own advocates and it's a battle getting good medical care. Thank goodness for the MS clinic and this forum. I really believe the advice and information (and support) I get here is good medical care too.

[Teddy]

Goodness me, Cricket! You sure have a lot to cope with. I can understand why you stick with your PCP, especially if he's good with kids. That can be hard to find, speaking from long, hard experience when my daughter was a pneumonia-prone baby/toddler. I'm just sad that you have to work around your PCP, though - they're supposed to be the communication "hub" between us and our specialists. My poor GP just throws her hands in the air - she hasn't got a clue what to do with me either!!

We have a doctor shortage here too, and horrendous ER wait times and bungles, but we're not that badly off in contrast to other countries I suppose (yet... we're getting there.)! I'm glad you've been able to get such great help from the MS Clinic. One day I'll tell you about my experiences with the MS Clinic where I live. Unfortunately, not good...

I know exactly what you mean about the test results - my GP's pretty good, but if she sees me trying to sneak a look at the notes on her computer screen she "subtly" tries to move the screen so I can't view it. What she doesn't realise is that I'm a career reader who's always been able to read upside down, at an angle, in dim light - you name it! :D Although that's been somewhat compromised by the drop in my vision.

I have to say, I was a bit ambivalent about the Amantadine, and was going to try the acetyl l-carnitine instead, but I've priced it and it's very expensive. But - you've converted me to Amantadine - if helps fatigue, and it's an appetite suppressant that made you lose 20lbs, I'm definitely gonna give that a whirl!!! (Put on much weight from being so inactive so I can certainly afford to lose a bit!)

[cyclingzealot]

Thanks for listening.

Thank you for sharing! :)

If you look up prophyria, I am thinking of the acute porphyrias, specifically AIP. You can check out some good info here:

http://www.porphyriafoundation.com/about_por/types/types01.html

Very rare, and tough to diagnose. I am only thinking of it simply because it is something my neuro suspects. Could be way off base as well.

Wow, your health care system is tough for me to imagine! I am sorry you have had to deal with so many problems just trying to get seen and treated. THat has to be terribly frustrating. :( I am used to being able to see who I choose when I choose. But the down side on our side of the coin is indeed just that - the coin. Healthcare here is very expensive.

I guess there is no perfect system. And we have to make the best of what we have.

You sound like a warrior, Cricket. :) Never give up.

[cyclingzealot]

Hi Cyclingzealot!

Hi Teddy! :)

[cricket52]

Teddy:

One day I'll tell you about my experiences with the MS Clinic where I live. Unfortunately, not good...]

Sorry Teddy. I don't have a lot of respect for the MS Society in Canada either. I just got very lucky because of the physician who was assigned to me. The staff there is exceptional. I have heard stories from others that the MS clinics are not all they should be, be it Canada, US or down under.

I would be interested in hearing about it.

I know exactly what you mean about the test results - my GP's pretty good, but if she sees me trying to sneak a look at the notes on her computer screen she "subtly" tries to move the screen so I can't view it.

We have full access to our medical records by law. Is that true for you as well? My PCP just doesn't like the loss of control.

Cyclingzealot:

Very rare, and tough to diagnose. I am only thinking of it simply because it is something my neuro suspects. Could be way off base as well.

Horrors. You are right about the similarities, but it sounds awful. I seriously hope it isn't porpyria. :eek: I think I was tested for that when I was in hospital, they sent a 24-hour urine to Ottawa which was negative. I was too sick to remember what the test was, but I do know it was metabolic. Mind you, neither dx is great. :( Is the abdominal pain related to constipation? Does it come with vomiting? Sounds horrible, at least an enema cures mine. :o

As for being a warrior, I am not so sure - a survivor maybe. Or a stubborn middle-aged advocate for the poor, disabled and disenfranchised. As bad as it gets, there is always someone worse off. I think we are all warriors at heart on this forum. :p

Never meddle in the affairs of dragons, for you are crunchy and taste good with ketchup.

[Barb]

Well you guys will love seeing me but I'm not the barb you were looking for. lol I thought it asked for your name so that's what I put in instead of screen name - well told ya all before the crash I was going ditzy - this just proves things haven't changed any.

Still in limbo - neuro don't need to see me now for 8 months unless things change drastically - but leaves it open for PCP to send me to rheummy now. So hopefully some answers there when I go to see her that is. Just been so busy haven't set up that appointment with her.

figure maybe someday they will figure out what is wrong with me. Until then I just plod along. At least migraines are under control for the most part - still have some blurry vision when reading, and forget things but hey I can chalk all that up to old age. I will be a ripe old age of 44 next month ......... lol

[cre8tivewmn]

Hi there. I am a new resident of limbo land. I suddenly developed walking issues around June 1 and have seen a variety of doctors since then. My family doctor was the funniest, he said "You have so many other conditions. I'd hate to add MS to the list," as if there were a limit. Still he IS trying to find out what is wrong, unlike the neuro who said "I don't know what is wrong with you," and that was it as far as he was concerned. He only ran a couple of tests.

My case is complicated because I have spine problems in my neck and lower back that could have something to do with the problem, but the very sudden onset of these symptoms, along with all the other symptoms I have make me think that MS has moved in with me.

So if it's all right with you folks, I'll hang out here for a while....

Cre8tivewmn.

[cricket52]

Pooh! You found us - welcome back :D I knew it was you the second I saw the pic.

When do you see the rheumy? Glad you have some relief from those migraines. I think all of us in limboland hold out hope that someday they will find out what's wrong. At least you are moving forward. :)


crea8tivewmn: Hi! and welcome to the board. :D

You can hang out here all you want.:) Great bunch of people and lots of info and support.

I think doctors are trained to say "I don't know what's wrong with you" in med school since medicine is not an exact science. It makes it sound like it's your fault somethings wrong and it doesn't fit their mold. If I had a nickle for everytime I've heard that one...

Sorry you are having such a rough time. With the spine problems you have, you don't need anything new. Hopefully you won't have to hang out in limboland too long, it would be nice for you if you could get answers quickly. MS is a dx of exclusion, so short of lesions on MRI, it might take a bit of time. Some of us are being to feel like we live here. :D

[Barb]

Cricket

It's good to see the site back up - I kept checking and checking after the site crashed - I was like missing all of you guys!!!!!

Any ways not sure of when I see the rhuemmy yet - may just ask my PCP to run the blood work since it looks like it may be a hard winter here in the south - or so they predict that. It got down to 38 last night ......... brrrrrrrrrrr way to cold for me - I got out my winter coat yesterday and it was 57 out................. lol

My PCP did put me on effexor and that has helped quite a bit with the pain that I was having in the legs - still get the deep bone pain but at least I can walk around without all the pain I was having so that is a major plus for me these days.

Still not doing good balancing in the dark - but we fixed that as well - so no more bouncing back and forth between walls walking down a dark cooridore at night cause I really hate to turn on a light for a few feet ........ lol

However I still go through periods of extreem fatigue and my hubby got to see them a couple of times this last month when he was home from the rig so he understands what I mean when there are just days I can't do anything because I am just so tired. So all and all - the same in some areas and some things are a bit better with meds that I am on. I think the thing that helped the most was when my blood pressure dropped earlier this year and I went totally off my meds for high blood pressure. Now if I just didn't bruise so easily ........... lol


Cre8tivewmn

Welcome to the group of limbolanders ......... like cricket says we are a fun group to hang around with. We all go through different things and some of us have long lists of things wrong with us. (Don't get me started - I got one off and neuro added another)

Auto-immune disorders seem to run in the family - talked to a cousin this last week - she has RA - and I already knew her sister had Lupus - plus I think an aunt had MS (things back then were hush hush health wise). So that covers both sides of my family now just with different types of AI is all. My neuro believes my problems are inherited just not sure what is going on - so it does take time to rule things out - and now the neuro part is stablized it's time to go to the rheummy to figure out what is going on - he has done blood work in the past but feels a neuro may be of more benefit at this time.

The thing to watch out for is that sometimes neuros will dismiss problems quickly because of the back problems and may not fully explore all possibilities. So don't forget that you pay the doctors wages - and that they work for you and ask lots of questions if you have them. It also helps if you find doctors that will work together and keep everyone up to date on what meds you are taking and so forth. Communication between doctors will be essential right now between all doctors that you see. So even if you are sent to a rheummy - make sure that your neuro gets a copy of reports as well as your PCP so that everyone is kept in the loop of what is going on.


Now a question for anyone that may be able to answer me - do any of you deal with the skin being hot - not like hot flashes - been there done that about 10 years ago - but just the skin being hot. My hubby complains alot that when I touch him that I feel like an oven when I touch him yet when I take my temp it's not that I am running a high temp - it's a low grade temp for me - around 98 -99 - normal is 97.4

[pals1107]

It's so nice seeing the familuar names. Too bad we have to meet like this though.
Well I am back from the Cleveland clinic. They started off on the wrong foot! They put me in as a Parkinson's patient??? I have to call and tell them they better not bill me for that doctor it was their screw up! Many calls on my behalf from the autoimmune group to the clinic and they got me in to see a neuro muscular doc.

What a trip! Sorry this is long.

The Parkinson’s dude was nice but confused as to why I was there, me too. He doesn't think its MS but put me into their clinic for MS in January. He thinks I should have a muscle biopsy and it could be a neuro muscular problem. Of course I heard the old line you are too old for MS and you don't have the bands.

So I saw the eye dude, healthy eyes, but have bad allergy irritation, and my eye problems are brain/nerve related he said.
"See a neuro".

Neuro muscular says he doesn't think it's a neuro muscular problem or MS, but there are all sorts off odd neuro muscular problems that are very hard to diagnose. He's keeping me because of the family history of muscular dystrophy on the maternal side in the family.
He gave me a script to take to my doctor (when I find a new PCP) for a thoracic and lumbar MRI. And mentioned the possibility of a bone marrow biopsy.

Internal med guy is confused and said something is going on, "but what"? Three times I flunked the heel toe walk for three different doc’s, but did ok for the most part on other stuff, hyper reflexes of course. He said I have a bad drifting problem to the right, duh no kidding.
He also says he doesn't think it's MS, because of no banding and I only have a few lesions over the 3-4 mm size, he said they should be like 8mm, no wait it was the Parkinson’s dude who mentioned the size thing.
He wants me to come back for a sleep study, actually he wanted me to have it tomorrow night, but I couldn't stay longer, not two more days. If they would have been able to get me in that night, I would have stayed. He set me up with a hemo also, and he too mentioned a bone marrow biopsy possibility.

So now I have a hemo/onco, MS, and a neuro sleep study scheduled for the beginning of January, and have to go soon for the MRIs but with no contrast. I don't understand why they want me to go to the MS specialist if they don't think that is what it is. But Ok. I just know that they will look at me like what the **** are you doing here.

They don't think I have Epstein barr or a Hughes (sticky blood) type problem. The internist said he is going to check a bunch of autoimmune things, my anti bodies and such, I think. But all I see on the order is a comp blood test, vitamine D test, and B Naturetic peptid (heart test) on the order.
Man another screw up! I looked at the copy of the order he gave me and they did the wrong test. He ordered a echocardiogram, and they did a EKG, these are different tests.

Other things they are running are tests for ALS (don't want that one for sure) Mystina Gravis (sp) Wilson's disease, and multiple myleoma. Well at least they are looking in some direction, all the other docs haven't seemed to do anything but run MS tests and say not enough evidence or no to that, and refuse to look at any other possibilities.

I looked up one of the blood tests he ordered and it is for left ventricular dysfunction. It's called B Natriuretic Peptid. He never mentioned thinking I might have a heart problem.

I can't believe the cardiac department did the wrong test, ah, yes I can.

They took about 12 tubes of blood and wanted lots of urine.

I had another anal spasm thing just before I was done with the labs. This one literally brought me to my knees and I was bawling like a baby. Do you think any of the medical people around were even curious? Not a chance, no one but a little old lady in a wheel chair, and she said something to the people at the check in for the EKG, but they ignored her and me.

I am beat! It was so hard walking around that place, my legs felt like ****, pain and very weak and heavy.

They said they would mail me reports in about 2 weeks, as some of the test will take some time.
So I know no more than I did before, but at least I am not being blown off as a nut case. The internal med guy says he thinks there is more than one thing going on here.
Pat

[Barb]

Well Pat

Maybe now you will get some answers as to what is going on. I think wilson test is to check for thyroid If I remember correctly - I was reading something on it the other day - but you know my brain - sometimes It works wrong still.

But really does sound like they are trying. The echo is a good test to have if they feel something is wrong with the heart - because they check and get like an ultrasound of the heart and can tell if there is any blockage or not. I had one of those done and it was ok - no pain or anything except he couldn't get to the one ventricle because my ribs - i.e. he said I was to skinny and not enough fat over that ventricle.

Other than that hopefully they will be able to do something for you since the others have blown you off - at least they are checking out other possibilities - more than what other doctors have done in the past. Which I think is really good.

Let us know what you find out.

[cricket52]

Pooh aka Barb: (You will always be Pooh to me)

You mentioned in your post that you lose your balance in the dark? Gosh, I never mentioned that one to my neuro cause I thought it was just me. What treatment are they giving you for it? (lol - my first thought was nightlite).

pals:

Glad the Parkinson dude was nice, :) even if he was the wrong doctor.

What a bunch of milarky you are getting about the lesion size. Since when do MS lesions have to be 8 mm or more. Some time ago on this board one of the MS'ers made her neuro use a magnifying glass on her MRI films to look for lesions and low and behold - what do you think they found?

Besides - who is not to say you are not one of the 5% who don't show lesions?

Not to mention your age. Since when does MS or any disease have a best before date?

However, this time your royal runaround is resulting in you being taken seriously. Keep us posted. Oh - did they do a B12? It can be low normal in MS patients.

[Barb]

Cricket

That was an easy fix - we bough table lamps for our night stands in our bedroom and one of us goes in there before it gets dark and turns one of them on ............ lol Can you tell I really like taking meds - when there is an easier fix around?

As for late at night getting up and going to the bathroom - we leave the tv running all night so we have light from the TV and also have a clock that we can set the brightness of the numbers on and trust me it can light up the room even during a power outage so no more total darkness at night. That and we have a master bathroom.

Early mornings before everyone is up - I may leave the bathroom light on that is off the hallways outside my sons room.

Nightlights may work - but all my sockets are down low and with my luck I would still trip over my feet - this way I can still look ahead and see where I am going. I guess we all do what we can to remedy problems.

I mean to bright of lights can trigger migraines - so we don't keep lights on that are bright all the time in the house unless we need them for something. So having lights on all over the house would be a big no-no and all doctors could say was turn on lights or find a solution which I think we found a good solution for us. Even helps my husband since he has a cataract on one eye.

[pals1107]

Crickett, I have over 20 lesions, with the second MRI showing more, and only one of the round about 8mm size most where 3-4mm.
B-12 was tested 3 times good every time.

I think they are thinking a neuro muscular problem, but they are also putting me into the MS specialists, just to be sure. No one has suggested a new brain MRI though, it's been almost 1 1/2 years since the last real one. ( I don't count the one done last December, the MS guy even said it was not done properly and was useless, 24 min for a brain, c spine and thorasic with and without dye, he tossed that one aslide, it was all blurr too) I think I'll ask them to do another.

Now I am just waiting for some test results to come in, I HATE WAITING!
Pat

[cricket52]

pals: Over 20 lesions? Good grief.

The waiting must be very hard. Hope the new MS specialist is attentive and you get some answers.

Pooh:

I forgot (brain fart) to answer your question about being hot.

A week or so ago when I was grumbling about the spasticity, the front of my legs (shin) were very hot to touch, like they had a fever and the rest of me didn't. Once the pain settled, so did the heat after I took some Baclofen.

It doesn't make any sense, I can't see spasticity causing a problem like that. Inflammation would though, which goes along with your autoimmune theory.

Face it woman - you're just a hot chick. :D

[Teddy]

Hi all! Barb and cre8tivewmn, nice to meet you!

I'm motoring along (so to speak), no worse but no better, although it's supposed to be a hot weekend here so I'm NOT looking forward to that. I'm going to my cousin's today for their son's birthday party. Last time I went there I needed hubby's assistance to pretty much drag me up the steep, dirt hill to their house - and hold me up on the way down. It was hard then, I'm SO scared about getting up (and down! :eek: ) that hill this time - and I was more steady and more mobile the last time we went there. It's unavoidable; we can't drive up to their house. The wheelchair isn't even an option, the ground is too bumpy and the hill too steep. I'm getting myself quite worked up about it!!

I must be worried - I had a dream last night that I was back at work and had to get up a slight ramp to get to my office - and I couldn't make it!! (Ramps or going uphill have been very difficult for me since my mobility issues started a year and a half ago).

Pat, I'm sorry your visit was a bit of a palaver but I'm so glad they're not giving you the brush-off now.

Barb, autoimmune stuff definitely runs in my family too. Severe psoriasis, ulcerative collitis, and my mother has scleroderma and accompanying Raynaud's Syndrome.

Well, wish me luck on getting through today in one piece!!

[pals1107]

Crickett, the lesions they say don't look like the typical MS lesions, too small and don't align themselves in the right direction. Although there are lesions on the 3rd and 4th lateral ventricials also.

What I hate hearing is "typical" not everyone is "typical". That's like they say 80-90 % of people have "O" bands, I have often asked what about the other 10-20%, they won't even answer that one, they just shrugg their shoulders.

So if you aren't "TYPICAL" you are just left in limbo until you are so bad that by then you are too late for treatment. This goes for about any type of disease.

No one wants to expend the time and energy for the diffiult cases, those are too hard for there feable brains, we just remind them of just how little they really know. They don't want to see "US" in their waiting rooms.
Pat

[pals1107]

Just another stupid thing I was told. If MRI's don't show major progression of lesions, it's not MS.

Is it me or are they nuts?
Pat

[cricket52]

I don't know pals. It's not just you. One of the executive-type individuals in the provincial MS office told me that 70% of lesions don't show up on MRI. That statement might have made sense 15 years ago.

On the risk of sounding pedantic, I keep saying that medicine is not an exact science.

But you would think that they would at least attempt to be on the 'same page'. There is nothing worse than getting sixteen different answers to the same question.

The 'progressing/changing lesions' thing is, I think, part of the McDonald criteria:

Table 2:
MRI Criteria for Brain Abnormality:
Space and Time Dissemination
MRI lesions disseminated in space:
At least three of the following criteria must be met:

One gadolinium-enhancing lesion or nine T2-hyperintense lesions if there is no gadolinium-enhancing lesion
At least one infratentorial lesion
At least one juxtacortical lesion
At least three periventricular lesions
MRI lesions disseminated in time:
At least one criterion must be met:

If MRI is more than 3 months after clinical event, then a gadolinium-enhancing lesion at a site different from the original clinical event is sufficient; if there is no gadolinium enhancement, then a follow-up scan is required (usually > 3 months later). A new T2 or gadolinium-enhancing lesion on this second or subsequent MRI fulfills the requirement.
If first MRI scan occurs less than 3 months after the onset of the clinical event, then a second scan > 3 months later showing a new gadolinium-enhancing lesion fulfills requirement. If no gadolinium enhancement is seen at this second scan, a further scan not less than 3 months after the first scan that shows a new T2 lesion or an enhancing lesion will suffice.


Copyright 2002 The Cleveland Clinic Foundation

No wonder so many of us are in limboland. I take back my earlier statement. The doctors have made it an exact science! Like everyone is going to fall into that criteria exactly?

We should go back to taking the hot bath test. I would rather they err on the side of wrong diagnosis than no diagnosis. I have no intention of taking CRABS if I were to get a definite MS dx anyway. The only thing that will change with a dx is my sense of where I fit in the grand scheme of things. While some people may think that's crazy, I know some of those who have had their dx recinded and those of us who have been through the medical wringer seeing specialist after specialist wouldn't think it's crazy at all. Personally I would be a lot kinder to myself if I knew what I had.

BTW - what ever happened to that blood test that was supossed to make diagnosing MS so easy?

[pals1107]

Crickett, I am with you on the CRABS, I even had one neuro say that if this were to be MS they might not be the best choice for me. THey lower your immunity, and I am allergic to all but one antibiotic. He didn't believe in LDN but would be willing to consider it for me for this reason.

I've been on LDN now for 10 months, and what ever it is I have going on it has helped. There have been occations that I have stopped taking it for a short period (just to see) and I paid for it! It has done wonders for my IBS also, it's like I don't have it anymore.

Doctors! my sister just got out of the hospital she was having severe pain in the lower abdomine. THey did tests and ultra sounds and x-rays and said they couldn't find anything wrong. One doc suggested appedix the other said nothing showed up, and sent her home. THe other doc called and told her to go to another doctor, she did. Her apendix wasn't in the usual place and it was gangenous, she almost died. THis was just this week. She wasn't the usual.
So if you hear hoof beats don't automaticlly think horses, it just may be a zebra. But tell that to the doctors, but they just believe in the usual.
Pat

[Matt]

The only thing that will change with a dx is my sense of where I fit in the grand scheme of things. While some people may think that's crazy, I know some of those who have had their dx recinded and those of us who have been through the medical wringer seeing specialist after specialist wouldn't think it's crazy at all. Personally I would be a lot kinder to myself if I knew what I had.



I would be nice if they had some way of proving that it's not MS in cases where it is not MS. Almost everyone will prefer the diagnosis with the best prognosis, if they had the choice to pick between two diagnoses. But, being told that you probably have MS without being given any reasonable alternatives is a hard thing to come to terms with.

[pals1107]

There is alot of diseases that can mimick MS, some mild, some make MS look like the flu.
Crap they are testing me for ALS, now isn't that scary? Also multiple myleoma, mystenia gravis, mylopliferative disorders, MD, all kinds of not nice stuff. This Cleveland clinic guy says he thinks I have more than one thing going on.
Just what? Waiting isn't fun, I'd rather know.
Pat

[Barb]

I'm with Pat and cricket and wanting to know and quit teetering on the edge of a dx or doctors trying to figure out what is going on. (or in Pat's case finally getting doctors to listen)

I have been going through tests for 2 years and all doctors will tell me that it's AI related and it's between SLE, MS, HN - all of which mimic each other. Doesn't help matters much that I have peripheral neuropathy with axonal and small fiber neuropathy.

[pals1107]

Barb, what is AI, and HN?

Doctors aren't always up front, they knew my husband had a limited time, a year or less, but told him 20-30 years and he would probably die of something else. THey didn't tell him for 2 1/2 years, and just blerted out one day that they were surprised he was still alive that most patients would have been dead by now.
7 months later he died, now he could have done things he wanted to do when he was doing good. He would have retired earlier, instead of retireing on a friday and starting chemo on the monday. They stold that time from us, and we never got to do those things we wanted to do.
Pat

[Barb]

Pat

Sorry about my abreviations - I get so use to shortening things because of shoulders

AI = Auto-Immune
HN = Heriditary Neuropathy (not exactly sure if this is the full name or not)

Seems nerve and auto-immune issues run in the family - from black out spells (dad), cerebal palsy (sister), SLE (cousin), RA (cousin), MS? (aunt), and my great grandma had a condition my mom always called dropsy basically she lost 100 lbs in a very short time and was hospitalized so not sure what condition that was.

[elle]

my great grandma had a condition my mom always called dropsy basically she lost 100 lbs in a very short time and was hospitalized so not sure what condition that was.

Interestingly enough, a quick google search found that there is a condition called "dropsy." Apparently it's general term for fluid accumulation in a body cavity or tissues- ie; hydrocephalus, ascites, etc. Looks like it is associated with heart disease and renal failure.

http://www.1911encyclopedia.org/Dropsy

There was also an "epidemic dropsy" that occured in 1998 in India due to a contamination of mustard oil. It caused issues with carbohydrate metabolism. Was your great-grandmother in India?

[Barb]

nope just of american indian decent as far as I know - I was only a wee little one when she passed so I really don't remember her much - and nothing has really been said about her medical history other than that. I know she was ill prior to that back in the 50's because that was when grandpa learned to read print but not really much. Like I said the old days - some things weren't talked about.

Thanks for the article

[Teddy]

I'm with Pat and cricket and wanting to know and quit teetering on the edge of a dx or doctors trying to figure out what is going on.

Barb, Cricket and Pat, I know exactly what you mean. Until I get a diagnosis of some sort (again!), I can't access funds (a total and permanent disability payment) to make modifications I need to my house. Who knows how long this will go on? And who knows when I might not be able to muddle through things around the house at all, let alone unsafely like I do now?

My MS Society case worker keeps telling me she wishes they'd just say it was something, anything almost, for pragmatic purposes, so that I can get on with organising my life. She says they can always change it later if need be, but just call it something!!

She's such a great person - she tells me that if nothing has been resolved with my diagnosis by my next neuro appt (which is March next year, barring any drastic developments), she is going to accompany me to the appointment and advocate on my behalf with my neuro for some sort of diagnosis so that I am able to access the funds I need to make my home accessible. Don't know how successful she'll be but I'm certainly very grateful to her for trying!!

[elle]

I can empathize with you all about really wanting them to say it's something, anything, except for it all to be in your head. It's almost like your symptoms aren't validated without a diagnosis of something. Also, to have a basic guideline of expected vs. abnormal would be nice (ie; is this rash part of the disease, or an allergic reaction? Are the tremors from low blood sugar or...? etc etc). Not to mention, some of these symptoms are embarrassing, it would be nice to be able to ascribe it to X as opposed to trying to explain it without a cause. For example, when I accidently throw things across the room when my myoclonus kicks in, or when I stumble because I can't get my feet off the ground, or when I am shaking so badly I can't get up out of a chair- it would be nice to be able to sum it all up as "I have X."

On the other hand, I am definitely using NOT having a diagnosis to my advantage. When I switched insurances this summer, I could truthfully say I didn't have ANYthing... And since I haven't been on meds in the last 2 years (cause I have been pregnant, nursing and pretty healthy) there should be nothing to cause alarm bells to go off. I don't feel bad about it, because I truly do not have a diagnosis. And I know if anything happened and I had no insurance, medicaid sure as heck wouldn't accept me (afterall, I have no diagnosis that would prevent me from otherwise getting medicaid), and I wouldn't be supported by any of the disease foundations, because I don't have a diagnosis!

So it's kind of a mixed thing for me right now.

I hope you guys don't mind if I get this off my chest: my new GP wants to send me back to the neuro practice I was at 2 years ago. When I called to make the appt today, I was told that since I was an established patient and, three years had not gone by, I would be required REQUIRED to see the same neuro I saw last time. I hate the @*(#W$&&. I refuse to see him. In addition to his terrible bedside manner, his lacadaisical air of just not giving a rat's bum and answering my questions with silence or shrugs, the quack gave me results of an EMG I NEVER HAD. He also gave me results and PRESCRIBED MEDS based on someone else's lumbar puncture!!!!!!! And after I had taken the meds, called back and said- oh sorry, not you. The #@$%*)@#!!!! And they insist that I HAVE to see him again?!?!?!?! Um no... I told the woman that was scheduling appts that she could shove it and I would go somewhere else and write the practice manager a detailed note stating how dissatisfied I was. She said she would ask the guy if he would relinquish me as a patient so I could see another neuro there... Right... After waiting 3 weeks for a phone call to schedule an appt that never came. I have bad feelings about this place, and I told my GP that at my appt a month ago... so why do I have a referral for there??

<sigh> Thanks for listening to my rant. The good news in my life is that the med I have started for the tremors seems to be doing it's job- the pain, weakness and fatigue are still there, I still can't walk right. But the tremors are lessened...

[Teddy]

Elle, I can definitely understand your frustations. One benefit of seeing the same neuro is so they can see whether there've been changes, or progression. But in your case, it doesn't seem to me that seeing your old neuro would be of any benefit at all to you. Quite frankly, he sounds seriously incompetent.

If I were in your shoes, in the interests of continuity of care and monitoring your progress, it may be worth following up that original practice to get an appointment with another neuro in the practice. If you don't have a rapport with whoever that is, ditch 'em!! I'd then request copies of your notes, and demand that your GP refer you to another neuro practice.

And on the point of you feeling your symptoms aren't valid, my MS Society physio and case worker always say to me "Would labelling it change your symptoms? Would it make them any better?" They're not downplaying the emotions associated with an uncertain diagnosis, just saying that no matter what doctors choose to call whatever it is I have, the symptoms would be just as real and just as compromising to my lifestyle. Does that make any sense at all?!?

[Matt]

Barb, Cricket and Pat, I know exactly what you mean. Until I get a diagnosis of some sort (again!), I can't access funds (a total and permanent disability payment) to make modifications I need to my house. Who knows how long this will go on? And who knows when I might not be able to muddle through things around the house at all, let alone unsafely like I do now?

My MS Society case worker keeps telling me she wishes they'd just say it was something, anything almost, for pragmatic purposes, so that I can get on with organising my life. She says they can always change it later if need be, but just call it something!!

She's such a great person - she tells me that if nothing has been resolved with my diagnosis by my next neuro appt (which is March next year, barring any drastic developments), she is going to accompany me to the appointment and advocate on my behalf with my neuro for some sort of diagnosis so that I am able to access the funds I need to make my home accessible. Don't know how successful she'll be but I'm certainly very grateful to her for trying!!

She sounds like a great person. These sound like the sort of reasons why I really wanted a diagnosis almost 6 years ago.

I have found out that MY real problem was that I had a really bad doctor. She said that I needed a definite diagnosis for wheeltrans, but you don't. She just didn't think my part-time job sounded all that important and she is sick of people burdening the medical system if they haven't paid enough taxes in their lifetime. I had two specialists ask me not to go back to see her.

[Teddy]

Matt, I'm really thankful I have these people; they help me out and support me so much. I'm really lucky.

It's a really hard situation to be in - where I'm "disabled" to the point that I need to make modifications to my home, but can't do so because I can't get a lump sum disability payment. Oxymoron, anyone?? :D

I gather wheeltrans is a sort of transport support for people with disabilities to enable them to access the community? And this doctor was denying you this??? I'm so glad you took the two specialists' advice not to see her again!

[Matt]

Matt, I'm really thankful I have these people; they help me out and support me so much. I'm really lucky.

It's a really hard situation to be in - where I'm "disabled" to the point that I need to make modifications to my home, but can't do so because I can't get a lump sum disability payment. Oxymoron, anyone?? :D

I gather wheeltrans is a sort of transport support for people with disabilities to enable them to access the community? And this doctor was denying you this??? I'm so glad you took the two specialists' advice not to see her again!


I've heard of this stuff happening to people with probable MS before. I really hope they can find some way to get you the money. Can't they just write down transverse myelitis or something for the time being?

Yeah. She didn't care that I had to quit my job. She was also adamantly opposed to me getting a spinal mri, because the test is expensive, and she said that MS usually doesn't show on the spine. Everyone else has told me that weakness usually does show on the spine which is why it wasn't suprizing that I had three spinal chord lesions. There were other instances where she gave out incorrect information too, and she got some pretty critical letters from two of my specialists before I stopped seeing her.

[Teddy]

MS doesn't usually show in the spine? What a very knowledgeable doctor... :rolleyes:

I have had some relatively heartening news - have spoken with my insurance company who say that I can access my superannuation (retirement fund) on compassionate grounds, which should allow me to at least get some stuff done. It's not much, as at 38 I should still be adding to my superannuation, rather than using it, but at least it's a start!

[Matt]

I'm glad to hear that you can get that at least!

[cyclingzealot]

Wow elle! That neur does indeed sound incompetent as Teddy says. I can't imagine beign given meds based on someone else's test results!

And I understand all the things you've said. You expressed what I think alot of us feel very well.

Here's hoping that however your neuro situation works out that you get a doc who cares and some answers soon.
Peace

[Barb]

Elle

I think I would have said something at the time about the results and the prescription. Oh my what a QUACK - guess we know he got his license out of a quackerjack box.......


Teddy

I understand about not having a dx and changing insurance companies - they can't automatically deny you based on their "criteria". In a way I am glad I don't have a firm dx as well. At least it's up in the air so if I get ssdi - then I can still get suppliment insurance and won't be denied that.

[elle]

Thanks guys- I really needed to vent about that. There was more stuff too, things I didn't realize at the time. Like when I actually did get my EMG, I probably should NOT have been taking the meds that were suppressing the tremor they were trying to evaluate... :rolleyes: Woulda been nice to know at the time. Of course the stupid thing was normal- I felt GREAT the day I got it. If they had done it when I was feeling terrible and could barely walk- would the results have been different? Oh, and how the lights went out during my LP- right after he stuck the needle in- and we were in this dark, windowless room, so there was NO light. I was terrified to begin with... And then how I was down for 10 days afterwards... and the nurse told me it was normal when I called on the third day and said I was still puking when I stood up, and couldn't sit for more than 10 min without getting a rockin' headache... :( Grrrr...

I've decided that after I call the appt chick back, to see whether my "transfer has been approved," I'm going to write a nice long letter and send it to the administrative official and the chief of medicine. Since the letter will probably go into my "permanent record" I don't want to come across as some psycho chick. But I really feel that the quality of care I received was just a bit sub-par and I have a VALID reason to want a different doctor. I do recognize the advantage of staying with this practice, but I will NOT see that doctor again.

Ok, now I need to go walk this off before that vein in my neck pops :D

[cricket52]

Hi Elle:

Once in a blue moon I get really angry about some injustice and fire off a letter.

Since I sit on a board of a community legal clinic I have learned to fire off really effective letters. I stick to the facts - no feelings. I list in numbered form - i.e. 1. On 9/9/52, the apt. with Dr. X resulted in the following action: - the MRI was discussed, the results according to Dr. X were... etc.

I avoid the use of the word I or we as much as possible. When you leave out the personal stuff they start getting worried - they think lawsuit and usually they acquiesce. Course once in a while they get defensive. When in doubt they blame the patient.

Big practices have good lawyers. :mad: Sending a letter will definitely give you the satisfaction you need since they were imcompetent and it might just help the next poor patient who gets shafted. The chief of medicine will probably investigate since you were given the wrong meds and someone elses test results. Good luck with it!

Teddy: Thank goodness you got some financial compensation. I had a physiotherapist who stood up to my doctor four years ago. She still remembers the encounter with great glee. He wasn't amused, but she won, or rather, I got what I needed.

Some days doing battle and being our own advocates is hard work. Other days its almost fun - in a small town like mine squeaky wheels get a reputation and most medical people bend over backwards. It's a shame though, health care used to be a symbiotic relationship between doctor and patient. Thank goodness we still have some doctors who have compassion and ethics.

I'm going to start a new check-in thread, this one is getting a wee bit long.

[illusion129]

Cricket, I pulled this information up on the Nation MS Society's (US) website. I'm pretty sure this is what you're wondering; if not, just post a reply and tell me if I'm wrong. Here is the link:

http://www.nationalmssociety.org/Research-2005Nov10.asp

I think that the information is pretty much up to date as far the criteria/guidelines go (they updated the McDonald Criteria in 2005 for those of you who didn't know).

It does deal with diagnosing a patient that doesn't show lesions but it requires that at least 2 clinical attacks be present. But then again there is always the possibility that if there are no lesions on your brain that they could very well be located on the spinal cord.

I'm definitely calling this new Neurologist tomorrow and ask, or demand, depending on his attitude, that all three areas be imaged this time (as I've ONLY had cranial MRIs in the past)...a new Cranial, a C-Spine, and T-Spine MRI with and without contrast; he only ordered a C-Spine MRI.

Do you think he'll make a fuss over me asking for all 3 areas to be scanned? I mean, I have the right to request that it be done, don't I?

I'm also scheduled for a LP the same day. I'm hoping that he'll agree to the "extensive" imaging as well as continuing the LP so that maybe I can finally get some answers, whether it be in regards to MS or any other disease/syndrome for that matter.

I'm going to make this request because I've finally met my super-HIGH insurance deductible and the tests will cost a TON less than normal; my last MRI cost almost $700...OUT OF POCKET! But now the insurance will pay 80%+ on any tests I have until the end of the year so this is the perfect opportunity to have all this stuff done...while the insurance will cover the majority of it!

Hope everyone is doing well! I'm going to lie down for a while before I go to my grandmother's for Sunday Dinner. Take care, y'all. And hopefully someone will be able to answer the 2 questions I asked.

[deanne]

hello i am Deanne,I am not very computer literate so please forgive me.I have suffered from symptoms for the past 11years,my GPsaid my history was suggestive of PPms.Severe loss of balance ,vertigo,leg weakness,stiffness,tinnitus,mobility problems ,numbness.I have been given a diagnosis of chronic inner ear disorder,but noone can give me a reason for my muscle problems.I have been seen by 3 neuros over these past years my MRIs of brain and spinal cord have all been clear.I have been becoming more disabled as the years go unable to work for the last 6.
I have an appointment with my neuro in December and would welcome any help or advice anyone may be able to give me.

Thankyou ( my neuro is 1000 km visit so dont want to miss mentioning something I should}

[cricket52]

Hi Deanne and welcome:

Goodness! My neuro is about 350 kms and I thought that was bad! Since you said 1000 kms I take it you are in Canada or the UK. Hope the Ministry of Health is flying you to your apt.

You fall into the same range as many of us in this thread. Lots of symptoms and disability but no diagnosis. Getting worse as time goes on. Not fun. :(

Limbolanders as we call ourselves have learned a lot from each other and from the MS'ers on the board.

If you can't get a dx, then ask your neuro to treat the worst symptom - ie. if the pain is keeping you awake, then ask for a drug that will work. If the pain is due to spasticity, Baclofen or Neurotinin (sp?) will give you a much better quality of life.

Is the neuro with an MS clinic? If so, you will have lots of telephone support from the MS nurses, who check with your doctor and have experience. I went for years with miserable symptoms, once I went to the MS clinic in Ottawa my quality of life improved 80%. They have given me advise about bowel and bladder problems, mobility assistance - everything I need to make my life as good as it can be. I had to quit work 10 years ago.

5% of people with MS don't show lesions. If an MS neuro diagnoses you as possible or probable MS, then you will get the support you need.

When you see your neuro, give him/her a list of symptoms, starting with the worst.

I'm sorry you are having such a rough time. Best of luck with your apt. and please let us know how your are doing. You are among friends here who know all too well what a struggle it is living without a diagnosis.

[deanne]

Thankyou cricket, may I join the Limbolanders,I think I may qualify after 11years.
I live in Australia. My main symptoms are my balance and leg muscle weakness and stiffness .Valium helps for a short time with both of these .
I dont have any pain at all.Over the past year my (r) leg has become worse than the (L).
As I mentioned I am not up with computers at all ,at 45 they were well after my time at a small country school ,and we have only had internet connected for 6 months so all very new and scary(but not as bad as a worsening undiagnosed disease) so please feel free to tell me if I am doing anything wrong here.Also only a one finger typist.
My neuro says he is a specialist with MS ,wether he is or who would know (I think they all work in with each other in a city Adelaides size ,and possibly all trained by the same person )
Also I am unable here to join an MS society unless diagnosed or a carer .

Thankyou cricket again,I hope you are having a good day.Lotsaluv

[Teddy]

Hi Deanne, nice to meet you! I'm a fellow limbolander, and by the way, another Aussie! :)

I was diagnosed in Oct 05 with PPMS and then undiagnosed earlier this year. Our histories sound quite similar. I hope you can get your problems sorted out soon.

One thing I wanted to mention to you - I was referred to the MS Society with a diagnosis of probable MS (before I got diagnosed with PPMS) and where I live, they were happy to take me on as a probable MSer, they just need a referral from a neuro.

Depending on what your neuro says at your appointment, I think it would be well worth your while to see whether he/she will refer you - the MS Society has been extremely helpful to me, with equipment aids (wheelchair, bathroom stuff, lots more), weekly physio stretching class, etc. Admittedly I'm not 1000 kilometres from a metropolitan centre but I'm sure there's still a lot the Society could do for you, particularly since you are fairly disabled by what's going on with you. They can also help you access community services like occupational therapy or home modification assistance if this is required (am doing this myself, right now!).

The Wonderful Cricket posts a weekly thread for those of us who are undiagnosed - you'll recognise me by the long and rambling messages about nothing that I can't seem to help writing... :)

One last thing - you're doing very well having only had the internet for six months!!

[cricket52]

Deanne:

Glad you and Teddy found each other. Sounds like after 11 years you need friends and support. Teddy has gone and is going through a terrible time too and is a wealth of information and gentle humour.

Since I don't know the Aussie health care system I can't help you navigate it, but thank goodness Teddy can.

My left leg has always been the problem, now the right one is getting weaker. I have spasticity with major pain and stiffness, so I can navigate, which is nice even though it's painful.

Glad you have access to the internet. Don't worry - at the rip old age of age of 45 I found it too and it opened the world to me. You are doing great! Once you find some game sites you will spend many happy hours playing and get lost in the fun. It helps on bad days. :D

Teddy: Thanks for helping Deanne with the information. I can navigate some of the Canadian stuff but that's all. I think it's great that we can talk and help each other. Ten/fifteen years ago that would not have been possible, international communication like this would have been a dream.

[deanne]

Thanks cricket and Teddy.Its taken me ages today to get back to this thread.
(is that what its called).
Teddy I shall take your advice and ask for referals to any support services in my area I may Qualify for.
The last 6 years I have retreated in my home and battened down the hatches.I think I have almost forgotten how to communicate to people .Maybe thats brain fog and dizziness.

What state do you live in Teddy?
And cricket I believe you are not having a good time lately,I am thinking of you.

Just one last question if I cannot find this place again( it took an hour for me to get here today) what do I do.It would be awful for me to miss your posts.

Take care

[Barb]

Deanne

If you want to get back to the Brain Talk communities - when you get to the page - just click on favorites at the top of the web page and then click add to favorites - then each time you want to visit - you just click on the link under favorites (click favorites then the link) and it will take you to the link - then just go to the group you want. You can also just do it dirently from the multiple scleroris group page

http://brain.hastypastry.net/forums/forumdisplay.php?f=195

and that will bring you directly to the forum and then you can just search the threads in that forum.

Hopefully that will help you get to the thread quicker in the future.

Since I haven't welcomed you yet - I am one of those that totally missed wednesday this week - just slipped right by me. Let me welcome you to the land of limbo. As most have said we have many symptoms just not the dx yet. Alot of my symptoms fall both into the catagories of those of lupus and MS that's why it's hard for me to get a dx yet - neither one has been ruled out yet. So here I sit in limbo for 2 different auto immune disorders.

I haven't yet been to the wonderful land of OZ but I have heard many wonderful things about it. I actually lived in INdonesia for a while so was quite close just never got over that way.

[Teddy]

Deanne, I'm glad you've decided to ask for help. There are loads of avenues through which you can get help, once you're "in the system", so to speak. They can also help you with aids which can get you back into the community. When I had my wheelchair foisted on to me by my physio, it was a difficult thing to face and I resisted using it at first (she kept on pestering me though, bless her heart!). Once I had used it, to go for a 7 kilometre "walk" along the river, it suddenly occurred to me how much I'd been missing out on, because I just avoided going out because my legs were so bad. I could never have done that walk on my own in a million years. Freedom again!!

By the way, I'm in sunny Queensland. I'm assuming you're in SA or NT? Does the heat trouble you where you are? I can tell you it's the bane of my existence. Thank goodness for our swimming pool - although I've realised that I now need a rail to be able to get in and out because my legs are too weak to get up the stairs... :eek:

Barb, the Land of Oz is a wonderful place (but I'm biased ;) ) - shame you didn't make it here when you were in Indonesia! It must be so difficult sitting between two diagnoses - I feel for you.

Teddy has gone and is going through a terrible time too and is a wealth of information and gentle humour.

Thanks Cricket - you're such a sweetie! I think that phrase better describes you though... your posts are always so wise and intelligent. Mine have a tendency to ramble aimlessly and at great length... oooh look, a bright shiny object!!!!! :D

[deanne]

Thanks again Teddy,and thankyou Barb for your welcome.

Barb was my mothers name and thanks for the computer help,I think I will be able to follow your instructions.How long have you been unwell,and searching for a diagnosis? Is wednesday a special day for us Limbos?

Teddy yes I am in SA.,half way between Adelaide and melbourne.Even down here farmers are feeling the effects of the drought,but of course not doing as tough as the rest of the country with a plentiful underground water supply.
The heat can make my symptoms worse,but other times not, just unpredictable.Weather changes can make me worse and down here we can have 4 seasons in one day(one hour even)

Barb it is very pretty down here can get cold and windy I am also with Teddy sorry you missed seeing aust. when you were in Indonesia.

Anyhow thankyou both for your hello and fantastic help
,
,

[Teddy]

Hi Deanne, no problem. I hope you can get some support.

You say you're halfway between Adelaide and Melbourne? If you need to have an MRI I know that Melbourne has one of the strongest MRI machines in this country. Also, Victoria is second only to Tasmania in relation to the incidence of MS, so you might have better luck seeing a neuro who specialises in MS there so that they can get to the bottom of what's going on with you. Melbourne may be be better option than Adelaide for you to see what's going on with you.

Yep, we're on Level 4 water restrictions - no watering at all, dams are at about 26% of capacity, I believe. Partly to do with our state government and its total lack of forethought on social infrastructure and population growth. Even without a drought, we'd still be in trouble because the population's grown too fast (much immigration here, from all states and internationally) and the water infrastructure can't cope.

Wednesday is the day that the lovely Cricket posts our undiagnosed thread - so make sure you're around that day to let us know how things are going, and how you're doing.

[deanne]

Gday Teddy

Under the isolated patient assistace travel fund in SA I can travel to Victoria and claim some of my travel expences.I have heard a neurologist travels across to a country town only about 2 hours drive from home. I am told from the MS support group coordinator near my area ,many of the people in the support group see him.(but I am not allowed to join the group because I am not diagnosed yet)

In 2002 I went and saw an otoneurologist in Melbourne,because my neurological exam was OK I had inner ear/balance studies that showed up minor abnormalities and had a few sessions of physio(didnt help at all by the way).Again noone could explain my leg muscle weakness.

I was very impressed with the tests done in Melbourne much better than any I have had in Adelaide.All my MRIs have been taken in Adelaide.

I feel if I am again Fobbed off by my normal neuro at Decembers appt. I will ask for a referal to this Victorian neuro.

When cricket posts Wednesdays thread do I find it under the today post headings? and with daylight saving in SA what time roughly will it appear.I think cricket is in Canada.

Best go now ,hope to be around Wednesday.

Barb the favourites worked,the forum a bit more complicated.Got here thou!

[illusion129]

Deanne,

Glad to see you found your way back using the "favorites" section of your web browser! We'd hate to lose you already since you've just joined the group.

So sorry I haven't posted earlier but I've been trying to help my aunt pack up stuff from her house as she's getting ready to move in with her daughter in Cincinnati; her husband just passed away this past Saturday (11/4). He would have been 90 on 11/10 but he passed away 6 days before his birthday; what a shame!

I just wanted to give a shout out to you to say hey and see how you were doing and to give you a word of advice. Only YOU can be your own healthcare advocate; a lot of times doctors will push you aside or dismiss you because they just don't want to take the time to "hunt" for what's really going on inside our body. It's a crying shame that they do this but it's all too true; suggesting going to the Neuro in Victoria is an EXCELLENT idea!

Let us know how everything is going for you. Also, keep us posted about the MS Society and their help to you and when you can get an appointment with the new Neuro in Victoria.

Until we chat agian, be good and take care! -RH

[deanne]

Hi Illusion,
Thanks for the welcome.IVe met Cricket Teddy and Barb.We all seem to be between a rock and a hard place.
Yep know what you mean,I even took myself to a psychiatrist,his verdict was i was mentally heathy than what he was, darn I thought if I had a mental illness there would be some treatment.

Sorry to hear of your uncles death and not making his 90 birthday.Hope he didnt suffer ill health for too long.How is your aunt? she must be a big age too.I would hate my sons to have to pack my home up as I am a real hoarder
never know when something may come in handy.

Yep shall keep you informed of my appointments.Dont expect to see the Victorian neuro for about 6 months it takes 6 weeks to get a non urgent appt. just with a GP.

And yes I am always good,but if I cant be good Im careful

[curiousforever]

Hey y'all! Glad to see this up and running.

I've had a really rough time lately.

Between problems (major ones) with my old doc and new symptoms popping up it's been crazy.

They are repeating my brain mri and having me do a sleep study.

My limbs will literally jump up, my husband says sometimes one of my eyes will be looking at him and one will be off looking somewhere else. That along with double vision when I get tired and problems with depth perception...

Hope y'all are doing OK....

[cricket52]

Hi curious!

Welcome back. :)

Problems with your old doc? Gosh - how many times have we limbolanders heard that one?

Sorry about your new symptoms. Sounds like MS-type stuff.

Let us know how the MRI goes.

The visual symptoms can be a real pain. If your hubby can actually see that your eyes muscles are not working, then you would think a VEP would show something.

Hope you can get some answers from the MRI.