Hey if there is a thread check in for not dx we should get one 4 dx'd

[dagaz]

We should do a check in get one 4 dx'd since undx do it every month?? What does everyone think???:)

[mmcc53]

I tried that a few years ago and got a lot of angry posts from those who are un dx who thought that for some reason on an MS board it was inappropriate for those with diagnosed MS to have a check-in.

In my opinion it is VERY appropriate. I'll start for you.

First attack and diagnosis in 1999 at age 46. Massive muscle cramps and within a few months unable to walk across the yard. I am progressive relapsing. I had no symptoms prior to the attack, except one epsiode of l'hermittes at about age 20. Was this MS which reared its head once and then 26 years later had attack #2?

At first we thought so and I figured, okay - I can live with one attack every 26 years, but in retrospect, it was probably unrelated.

I have been retired on disability since 2001.

[cricket52]

dagaz:

That's a grand idea. I know many MS'ers have been extremely helpful when limbolanders have questions. Why on earth would limbolanders object to what thread anyone wants to put up?

Our check-in thread gives us a place to vent and support. We all need support. :) Judging from the viewings a lot of people read that thread and hopefully get something from it once in a while.

I say - go for it!

[jena1225]

We should do a check in get one 4 dx'd since undx do it every month?? What does everyone think???:)

Aren't all the other threads mainly "for" the Dx'ed?

[jena1225]

Oh, I think I get it. It is basically a thread for venting, or just what's going on with your life, etc... Instead of starting a thread. Great idea! lol

[ArottySDmom]

I am not a not yet diagnosed but not also quite a MS'er...anyway, whatever I am, I say everyone here is important and its great to care about each other no matter what and check in....good thread!

[Agent]

I want a "Diagnosed, but in Denial" thread.

I am running myself ragged trying to prove to myself that I don't have MS.

The result? I'm getting a lot accomplished but I'm running myself ragged.

:p

[Coyote]

I so appreciate this thread as I really like to be able to compare notes and talk to ones who've been there and who do have their diagnosis.

Like the mmcc53 post. She started with terrible cramping and that's what I am having problems with, so I know it happens in MS. My DIL also had a problem like this and she has MS also, but she is not here to benefit others reading these posts and trying to figure things out.

Having these posts and queries mixed for those diagnosed and those wondering if they indeed have MS, is a real benefit and help for all I think.

Thanks.

~Kewanee

[jena1225]

Kewanee, where is your DIL? She does not have access?

[Matt]

I'm doing really well these days. My first attack was in February 1999. It wasn't untill january 2000 that I was told that I pretty well must have MS despite my normal brain MRI, but not untill january/february 2001 that I had gotten all the tests done and they started me on Betaseron.

They put me back onto the probable category because of the persistantly normal MRIs, but then they changed their mind again and put me back in the definite category again...too many flares to not have MS, and all my tests for other things are normal.

I don't know if it is the medicine, or if I just turned out to have a milder case. It certainly didn't seem like it was going to be mild in the beginning, neither to me nor to my doctors.

[Coyote]

Kewanee, where is your DIL? She does not have access?


No access but I don't think she'd come on anyways.
She was driving home from work one day and found her hand cramping around the wheel and couldn't get it off. She honked for her husband to come and help her. Said she had a few things happen before but thought nothing of it. Not that pronounced. MRI's showed lesions when she got to the Doctor. Good one in Mass.

She has more now and it's only a couple years later. Thing can behave so diff. with diff. people.

Last I knew she couldn't walk her street without getting exhausted on a spring day. Mom of two.

Would do her good to exchange feelings and questions with others who have MS without having to leave her house. Maybe someday.

~Kewanee

[Coyote]

Matt,
What was your first experience with MS?

~Kewanee

[Matt]

Here's my story, copied from another forum. I have quite a mild case of MS, these days


Currently, I have very few symtoms. I have a lot of fatigue, and sometimes I am a bit spacey. My feet tingle. Walking outside when it is humid gives me blurry vision. My ankle coordination isn't 100%. It's nothing to complain about, though.

I have had a lot of flares.

Flare#1: A variety of symptoms for two months, none lasting more than 2 weeks. Facial paralysis, burning sensation on the bottom of feet, uncoordinated right ankle, muscle in right leg seizing up so that I had to swing it around in a semicircle after walking a short distance, electric shock sensations in various nerves, balance

Flare#2: Five weeks. Occuring about 6 weeks after flare#1. Staggering, severe intention tremor in right arm, some double vision. Diagnosed with intention tremor, cerebellar ataxia (by a GP), bilateral INO (neurologist).

Flare#3: really a series of flares and remissions lasting 5 months occuring two months after flare #2. Dropfoot, weakness, particularly in right leg. sometimes I could barely even push my right leg forward along the ground so I would drag it behind me, with some weakness in left leg (worst days). For a while a burning sensation on right side of my chest.

Flare#4: A few months later lasting 2 weeks. A burning sensation on right side of my chest.

At this point I had oligoclonal bands, normal evoked potentials, a normal brain mri, and 3 spinal chord lesions. All subsequent yearly MRIs have been normal.

Flare#5 A half year later lasting 2 weeks. A burning sensation on right side of my chest.

Flare#6: 2 or 3 months later. Nystagmus (diagnosed on the phone; when I looked to the right one image went back and forth horizontally, while the other went diagnally but more vertically), a bit of return of arm tremor.

Flare#7: 1 year later, blurry vision 3 weeks

Flare#8: a few months later, Double vision. Pretty bad concentration problems that summer.

Flare#9: half year later. Blurry vision, 3 weeks

Flare#10: 1 year later. Blurry vision. Diagnosed with optic neuritis in right eye (he thinks it was the right eye, at least). Optic disc pallor indicated prior optic neuritis in left eye (I didn't have any optic disc pallor for first several years--more than 3 years in beginning without it), bilateral INO.

That summer, evoked potentials were repeated. Now positive in right arm and leg and both ears. VEPs normal.

Flare #11: 1 year later, lasting 2 weeks. A burning sensation on right side of my chest.

Relapse free for almost a year now.


I forgot to mention trigeminal neuralgia, which was pretty terrible, and, since then, I have had another flare of blurry vision, not all that bad.

[Howie]

I was DX with MS in July 98. From the first noticeable symptom to DX, a matter of days.

My MRI showed I had multiple lesions and some old ones so I'd had MS for a while and didn't know it.

My second attack was a rough one and ended my working days.

I still take no MS drugs. Have no Neuro. Can still walk unaided, and still drive. Life goes on.

[Coyote]

Good attitude Howie and who's to say if crabs would have helped or not?
My dil got her diagnosis pronto as well. Put her right on one of the crabs and I dont think it's done a thing because she is progressing quickly.

~Kewanee


I was DX with MS in July 98. From the first noticeable symptom to DX, a matter of days.

My MRI showed I had multiple lesions and some old ones so I'd had MS for a while and didn't know it.

My second attack was a rough one and ended my working days.

I still take no MS drugs. Have no Neuro. Can still walk unaided, and still drive. Life goes on.

[Coyote]

Matt,
You are a perfect example of why Doctors should wait and not rule out MS right away. Look at the time period with you and how things developed here and there over time. Pity the people who's Doc's say right away oh it's nothing or no MRI findings on the brain and that's all they do.

Your experience shows how first tests were not so conclusive but things showed up later. Thank goodness you had that spinal scan.

Thank you so much for sharing your experience. I can identify with alot of it, things coming and going like with the feet. You can forget alot of it once it goes away.

I hope this helps some others around here or that may come here.

~Kewanee

[lady_express_44]

I had a bad paralysis attack, then recovered. There were minor flares over the next 12 yrs (numbness, unexplained fatigue, etc.), but nothing in comparison to what I'd already been through. :eek:

I accepted that they wouldn't likely dx MS until I had another CLEAR attack, and even then, only if the lesions showed. I likened it to 'they needed to see the break before they'd put on a cast' . . . but at least a cast would come off in 6 weeks. :rolleyes: I liked denial, even if I was putting up with weird things in the meantime.

I don't think MS is EVER off the table when we have neurological symptoms. When I had my second big attack, the first thing my doctor said was "I'm thinking it's the MS", even though we NEVER once uttered those two letters (or words) over that 12 yr period.

It still took another 2 yrs to convince me. :p

I wouldn't wish MS on my worst enemy.

Cherie

[Virginia]

I have had MS for probably 30 to 35 years. This should give some of you newer ones a lot of hope. I never had a clue until I was diagnosed about 6 1/2 years ago. After I found old records it was clear that I had been going off and on to the Doctor for little things that in hindsight were definitely MS related, and might be spotted now. However, I was going to the same Internist as my PCP and he just never put it all together.

Having said that I was never that unhealthy and always looked the picture of good health. I worked all the time and had a very full life.

Then I started having symptoms that I began to take notice of and they got worse, such as vision problems with things looking dim, not being able to walk fast, stumbling, tingling. Finally, my Doctor said I had Raynaud's, then he said I might have Pheripheral Neuropathy.

At that point, when he did not recommend a Neurologist I made my own appointment. I went without records, to find out what was causing my Pheripheral Neuropathy. One of the test he did was an MRI of the cervical spine which showed a leison typical of MS. From there more test ending with a LP. No pheripheral neuropathy, but definitely MS.

I am now on Rebif and have been for 5 1/2 years. Was on Avonex for 1 year and Copaxone for six months. I hate to admit how dumb I was about MS. I had never met anyone who had it, and had only briefly read about it in trying to research my symptoms. I just said to myself "Thank God I have aged out of that" and passed on over it. So now I try to remember how I was when others are so clueless about MS. I was not an unsympathetic person, but just did not know anything other than MS was a disease I did not want to have.

That led me to BT and the forum was very active then. I got tons of really good advice. Much more than I ever learned from my Doctors, so I have always been grateful.

During this time my husband of over 26 years died, so I have known big stress, but have kept going. I take care of the house and work part-time. It keeps me busy. I am thankful.

Virginia

[Coyote]

Well Cherie,
I think that would be the Doctor to stick with. Must be in his records and he knows.

There again I see a long span of time where things may not have been diagnosed had you not had the big episode.

It really is good to know what you have so you know the enemy you are dealing with and how to go about handling it, the best you can.

I got a kick out of you liking denial. That was cute.

Virginia,
I got alot out of your experience too. Again there is a period of time taking place before getting diagnosed.
I'm not diagnosed so this all helps alot. Sure glad this thread was started.

My PCP has left sticking me with a new one and he had put MS and to be referred for it.
Years ago, I had records transferred and I looked at them myself and saw the question "Is this MS" ? I have an appt. with a movement disorder specialist but have learned not to place hope with any of these guys of getting a definate reason for my problems. Have gotten quite bitter I think and distrustful of the medical community, at least alot of it.



~Kewanee

[Matt]

Unlike a lot of people, I thought I had MS from the very beginning, and I wasn't at all suprized when they told me that I had MS. I do think it really takes away from their credibility when they try to base everything on one test.

Kewanee, aren't all of your tests normal? I would think that you should be very willing to investigate other possibilities if they are ALL normal...that's not common.

[Coyote]

Hi Matt,
Yes other things have come up because I had a period of my ANA's being quite elevated and Sjogrens has come up.

First Doc. said Lupus and no other Doc. has agreed. Don't have any of the other anitbodies for Sjogrens either.

Women with MS can have elevated ANA with a flare. Usually 1:320.

Just a side point.

Had EMG's and only one showed the Tibialis Anterior has something going on. A QST test at the Univ. in Aug. Georgia showed Axonal nerve damage both legs and they thought maybe neuropathy but changed their mind for some reason. Guess because it did not move on and have the pain most get with this.

I had painful feet and ankles but then went to numbness and involuntary movement in toes and body.

Subsequent EMG showed nothing.

MRI's were clear of the brain as of two or three years ago. Cerebral Atrophy now however.

So guess I'm do for some new testing while I can still walk.

~Kewanee

[jena1225]

Cherie, as you know we have very similair backgrounds, even the denial part. It's kind of funny, up to a year ago this May, I cannot count how many times I have said this phrase "Oh yeah I have MS, but I am one of the "lucky ones!" It doesn't effect me like most people with MS. I forget I even have it."

Bite my tongue :rolleyes: Geez, all I was saying was that I lucked out, and that there are so many people with MS that need the attention rather than me. The ones who can't walk, etc...

So, did I jinx myself or what? I mean, don't get me wrong, I am happy I can still walk. But I am slowly declining, and I am soooo depressed right now. My nuero saw it too I guess. He referred me to a psyciatrist.

It's all the little things that are really disabling me (pain, tremors, spasms, legs tire easily, etc.. you know) But they are happening slowly this time, not like my first one where I just went paralyzed! I know my memory is not that great, but I would put money on that I think I preferred that :eek:

I have been just thinking about so much lately :(

[Sandshoe]

I want a "Diagnosed, but in Denial" thread.

I am running myself ragged trying to prove to myself that I don't have MS.

The result? I'm getting a lot accomplished but I'm running myself ragged.

:p

Yeh, I'm with you!!! Four neuros have dx'd me - that was 2 years ago, ready to find more - mind you don't know what I'd think if someone un dx'd me!! Probably enough after two years to be put off finding more neuros

[lady_express_44]

Yeh, I'm with you!!! Four neuros have dx'd me - that was 2 years ago, ready to find more

Yep, took 3 to convince me too. :D My GP actually rolled his eyeballs at me the last time I came to him with another alternate dx I'd discovered on the internet. :p

16 yrs into it now, and I've only really believed the last 2 yrs.

Cherie, as you know we have very similair backgrounds, even the denial part. It's kind of funny, up to a year ago this May, I cannot count how many times I have said this phrase "Oh yeah I have MS, but I am one of the "lucky ones!" It doesn't effect me like most people with MS. I forget I even have it."

Bite my tongue :rolleyes: Geez, all I was saying was that I lucked out, and that there are so many people with MS that need the attention rather than me. The ones who can't walk, etc...

So, did I jinx myself or what? I mean, don't get me wrong, I am happy I can still walk. But I am slowly declining, and I am soooo depressed right now. My nuero saw it too I guess. He referred me to a psyciatrist.

It's all the little things that are really disabling me (pain, tremors, spasms, legs tire easily, etc.. you know) But they are happening slowly this time, not like my first one where I just went paralyzed! I know my memory is not that great, but I would put money on that I think I preferred that :eek:

I have been just thinking about so much lately :(

Jena, I did three years of counselling, and spent the first year crying at every visit. That guy made some easy money. :p (Not really :rolleyes: )

I responded to most of your other comments on your "Just not sure" thread.

I still think I am one of the lucky ones as I know how great the chances are that I would have stayed paralyzed after both those big ones. Also, I have friends with MS who are bedridden, and I know how quickly and devastating this disease CAN affect us.

Our lives are not what we expected (whose are, really?), and we won't likely achieve what we thought we would. Truth is though, we can find happiness in other more simple pleasures . . . eventually.

Cherie

[dagaz]

I am so glad this was taken soooo well!
LadyExpress my first real exacerbation was just like yours, I couldn't feel from my breast area down:(

I had meningitis at 13 and had a lumbar puncture, My mom said they dx'd me then but she didn't tell me. :rolleyes: My mom is a little bit of a hypochondriac so when things finally started happening I kinda believed her.


Agent.... I am so with you... I walk like a drunk, talk like a drunk... does that mean I"m a drunk...LOL you know walk like a duck quack like a duck... ect I have been in the denial lane since dx... But the ragged part I totally understand.

Sandshoe... I wouldn't want a different dx like having ALS, I actually thank God that I wasn't saddled with that disease I couldn't imagine.

I Read everyones post... I think that is the first time in a thread I have done that...:eek

As most of you know My MS dx came with a dx of a brain tumor as well... You know things come in two's or is that three's. ...LOL

I have been keeping damage for several years now and am still am not on any MS meds.... Sorry they freak me out.

I hope everyone is well and lets keep this UP!!!

Good Vibes everyone and a huge HUG....

Dagaz

[Tylerhenry]

Hey Check-in people with a dx,

I usually check this site daily, but there is often not much that is of importance to me, or what I have to say has already been said. I was diagnosed in August of '98 and have been pretty up on the MS scene since (y'know, treatments, quackery, etc.). I won't say that I know it all, but most of what is discussed here with regard to MS is familiar to me. I have become more of a "lurker". I have used this site for six years (ish).

My MS is fairly stable right now. I have been getting infusions of novantrine/mitoxantrone for the last four years. I have had eleven doses and will be able to get two more before I reach the limit. That is why I have been trying to stretch out the time between infusions. My last infusion was in September so I am thinking of getting my penultimate one sometime in May--Then I will be all set for the summer. ;)

I also take neurontin, zanaflex, cesamet, and various supplements. I try to eat well and get as much exercise as I am able. I use a wheelchair most of the time and use a rollator around my place on occasion. I live alone in a two bedroom apt. in South Central, so I am quite busy just keeping my life running (well, rolling :) )--cleaning, getting groceries, appointments, etc--The normal stuff people do to survive. It just takes me longer. I go for phyisio and lift weights at the university.

Other stuff I would say on a "dx'd folks" check-in can wait for another time. I think that this is a great idea!

Peace out,

Tyler

[dagaz]

Tyler..

Holy Cats... I thought I was on a lot of meds at one time. Sometimes you have to wonder if the treatment is worse than the bloody disease! I went off some of my medications that I was reacting to terribly. I hope things get better for you...

[Virginia]

Tyler, sounds like you are getting the most out of Novantrone. That is really good. Hope they come up with something else when your alotment runs out.

Virginia

[Cherie]

I was diagnosed in 1994 after having significant sytmptoms off and on since 1975. Did not go on meds till 2001 and continued to go down hill till I got off a lot of the sympomatic meds that I was on and change my injectable. Now I am doing better than at any time in the past 15 years. However, now my MRI has more lesions than I've ever seen it have! Lots of lesions and I'm doing great. Go figure!

[dagaz]

Cherie... Isn't that the way it seems to go. The Dr.'s pump us up with so many medications half of the time we don't know which way is up.

The fact that we all have someone we can relate to here is the BEST!!

Matt, I was never in limbo either.. Fortunately.

People that are in LIMBO I don't envy. I cannot imagine not knowing what the he11 is going on with my body.

Have a good one!!!

[0357]

When I was quickly diagnosed in 1992 I had 2 5mm lesions and a ton of symptoms. Over the next four years I reached 9.5 on the Kurtzke Scale. I was diagnosed as Progressive Relapsing.

Now that my MS is basically in remission they now say I started out at Relapse Remitting that hit hard. But now I have a ton of lesions and some black holes; few symptoms except for a drunken walk and speech if I don't pace myself. Cognitive problems caused from damage during my first four years of MS.

[Gary]

I too am one of those people that were never in limboland. As a matter of fact I can tell you the day that I "got " MS, the last Sunday in August 2000. It was the last day of our county fair I had brought the kids livestock home and my son and I went to unhook the stock trailer from the truck the hitch was stuck and I straddled it to lift it loose from the ball (dumb farmer thing I know) my back popped and my son said "God dad was that you or the hitch?" As soon as I was able to wipe the tears from my eyes and stop screaming I went up to the house. The next day I milked as usual and went to my job as physical plant supervisor for the department of corrections.

I made it until lunch time and stumbled home. I went to the Dr. and had x-rays and the normal muscle relaxants and pain pills after a few days he ordered MRIs that afternoon he called and said to have my wife drive me to his office he would wait for me it was already 6 at night.

He held the MRI up and said it looked like Swiss cheese (brain and spinal cord) he said I cant believe you are even walking around. As he was also the MD for the prison he told me you are in trouble you need to apply for SSI and clean out you desk, you are pretty much done working. I applied for social security and my pension and there was no question with in 2 weeks I got my approval letters from both. I do what I can for about 2 hours or so a day and watch a LOT of television.

I also have 2 kids (now grown) that have diabetes since they were very young Type 1 diabetes is caused as a result of a autoimmune disorder.

I now have MS, Lupus, diabetes, really high blood pressure, really high cholesterol. I have had more flares that I can remember, one time I spent 4 days on a ventilator. I take so many pills that it is like a meal in itself. Oh and my favorite my betasteron shot. And of course as most of you know my really strange sense of humor.

This is the first time I have written this down like this. Hmmmm I am a walking disaster.

[Cherie]

Gary,
I've heard all of this developing over the years but it really hits hard when you see it all in a paragraph like this. You are one very special guy and I feel very privileged to know you!

[MaryLiz]

Its interesting to read all the histories. I too knew almost right away that I had MS.
I was standing on a gravel road high in the Andes, for my work, when I felt like I couldn't keep my balance and had to walk with my legs apart like a old sailor. Plus something was wrong with my sight. I thought it was the altitude but the symptoms didn't go away when I came down off the mountian. They got worse.

MRI: When the docs doing the MRI asked to put in "contrast" just when I thought the proceedure should be over, I knew something was wrong. Then, the radioligist told me his preliminary findings. ...My neuro said what I already knew, "highly probable". He was hedging his bets because he didn't treat many people with MS. (Peru is close to the equator)

Thinking back, (don't we all to that!) my real first attack had been several months earlier when I'd had right buttock numbness that lasted for 3 weeks.

My third attack was about 1 year after the 2nd. I lost movement in my left leg. That lasted about a week after heavy doses of steroids.

After that I moved and found a neuro who treated lots of MS patients. He prescribed Rebif. I haven't had another attack since I started. However, I live, as we all do, with fatigue that at times is almost overwhelming. Plus the muscles in my thighs don't work as well as they did. Going up stairs is always interesting. I have foot pain and body twitches and aches.

My insurance doesn't pay for the Rebif. I'm lucky that living overseas, I can afford it--kind of. I'd love to get off it. But then there's that question of, do I really need it or is it the only thing that's keeping the attacks at bay?

[Coyote]

Don't take the chance of coming off of it if you may be one of the 30+% that it works to help lessen the amount of exacerbations. Damage that may be done in just such a time may not go away. Eeeek. To scarey.

~Kewanee

[jena1225]

Cherie... Isn't that the way it seems to go. The Dr.'s pump us up with so many medications half of the time we don't know which way is up.



I must say that since slowing weaning myself off of all my meds, I feel so much better! I just cut my doses in half, then 1/4. I still take 75mg of Lyrica, 10 mg of Baclofen, and the Cymalta in the morning. NO MORE TEGRETOL!! I have my mind back!

My nerve pain has been stable. That is either the Cymbalta working OR, I am just in a good phase right now.

My WORST problems right now are:

My low back, hip, leg, calf pains! :eek: :eek: AND

Stress! I have really not been under too much lately, as family has been helping with kids, shopping, etc... but just today I am having such a hard time with the kids, noise, etc... Help!!

They fight all the time, I get upset, start shaking/tremoring like crazy and just want to cry from al the noise and commotion.

Now, I am in a horrible mood, irritated. I took 1/2 valium, but think I may need more.

I am so mad as things seemed to have turned around for me and I had a great few days, but then again, my kids were not here for the weekend :( That sounds horrible, but I see the commmon denominator and just having a hard time coping I guess.

[Virginia]

MaryLiz, I am also on Rebif and have been for 5 years. I have wanted to be as aggressive with treating my MS as possible, and yet in an appropriate way for me. I was diagnosed 6 1/2 years ago. I was on Avonex & Copaxone before Rebif.

I have also wanted to learn and know everything about my MS that I could. This is just part of my personality. I don't deal well with the unknown. The one thing that I have been hesitant about doing is being tested for NABs. This really scares me because I do feel the Rebif to be the most helpful of the drugs I have been on for me personally.

Think hard before giving it up, remember it is the damage it prevents in the future, but once the damage is done that is usually it.

Virginia

[mmcc53]

I must say that since slowing weaning myself off of all my meds, I feel so much better! I just cut my doses in half, then 1/4. I still take 75mg of Lyrica, 10 mg of Baclofen, and the Cymalta in the morning. NO MORE TEGRETOL!! I have my mind back!

My nerve pain has been stable. That is either the Cymbalta working OR, I am just in a good phase right now.

My WORST problems right now are:

My low back, hip, leg, calf pains! :eek: :eek: AND

Stress! I have really not been under too much lately, as family has been helping with kids, shopping, etc... but just today I am having such a hard time with the kids, noise, etc... Help!!

They fight all the time, I get upset, start shaking/tremoring like crazy and just want to cry from al the noise and commotion.

Now, I am in a horrible mood, irritated. I took 1/2 valium, but think I may need more.

I am so mad as things seemed to have turned around for me and I had a great few days, but then again, my kids were not here for the weekend :( That sounds horrible, but I see the commmon denominator and just having a hard time coping I guess.


Ask about trying either alprazolam or clonazepam instead of the valium. If you take alprazolam during the day and clonazepam at night it may help you with the stress as well as the leg pain (if it is due to spasms or cramping).

If you one of them every 6 or 8 hours (depending on how you react to drugs) in a few days, if you are like me, you will not feel drowsy or fuzzy headed at all - in other words, the "side effects" vanished, but the good effects remain.

BTW - Lyrica is what is probably taking care of your nerve pain. That is why most MSers take it.

Cymbalta is an anti-depressant. If you are having trouble dealing with stress and the kids, think back to whether that improved or got worse when you started the Cymbalta. Some anti-depressants do not work for some people and can cause psychological side effects. If you are still depressed or think the Cymbalta may be contributing to your problems, call your doc and see about trying a different anti-depressant. But, be sure that you do not stop taking it abruptly. If you decide to stop, you MUST taper off slowly.

[MaryLiz]

Virginia, thanks for the encouragement. I'm not really planning to give up the Rebif. It's just a nice "what if" daydream. I am always interested when I hear from folks who have been on same meds I've been on, but longer than me. You can't help but wonder what's in store...

mmcc53, you are right about anti-depressants. If they work they can be wonders, but if not...But as you said, you have to wean yourself off slowly. Or, things can go from bad to worse.

Hopefully jeana1225 you can talk to your doc about adjusting your medication. He should really listen to what is going on.
But, it's pretty normal that your kids will get on your nerves sometimes. kids can drive you nuts sometimes. Didn't someone say about children "If they weren't so damn cute, we'd kill them"?

[jena1225]

MMCC - Ty :) I actually just started the Cymbalta last week. Either way, the kids aren't really stressing moe out more than they normally do, except that since being semi-down the last few months, I have had a lot of help with them. Maybe too much :rolleyes:

This last relapse I had really left me where any kind of stress really sets my body off. my hands, arms, and head will not just tremor, but twitch like terrots (sp?) syndrome.

I know it is from my lesions sizes and location, and the valium does help, along with hiding in the bedroom when I can! :D

I don't feel any difference in the change of AD yet - good or bad.

MaryLiz - so true, so true! :eek: lol

I just cannot wait til they are out of this stage! aaarrrghh! lol Yesterday morning started off so nice. All of us were home together on a beautiful Sunday and were going to spend the day in the NEW pool we got.

3 hours later, I am in my room with the door locked! I know it's normal for their age, I just hate walking around while my whole body is going nuts!! And I have to be in a quiet area to calm down.

When DH isn't here, I of course HAVE to deal with it, so I still semi-hide,but I will let them see me shake, and that sometimes stops them!

[mmcc53]

jena,

I know what you mean about the stress and physical symptoms. Pre-MS I thrived on stress, and it drove me crazy that after MS stress has really bad physical effects - in my case spasming and muscle cramps. And it doesn't matter what the stress is from.

I was lucky, I didn't get MS til my kids were grown.

Consider asking about the alprazolam - it really works well, especially taken around the clock and it doesn't make you feel drugged at all after a few days to adjust. You still feel normal emotions, etc., but it really helps with the physical part of the reaction.

[jena1225]

jena,

I know what you mean about the stress and physical symptoms. Pre-MS I thrived on stress, and it drove me crazy that after MS stress has really bad physical effects - in my case spasming and muscle cramps. And it doesn't matter what the stress is from.

I was lucky, I didn't get MS til my kids were grown.

Consider asking about the alprazolam - it really works well, especially taken around the clock and it doesn't make you feel drugged at all after a few days to adjust. You still feel normal emotions, etc., but it really helps with the physical part of the reaction.


Sounds like alprazolam is an anti-anxiety, but instead of instant relief, it gives you constant relief? Just that I don't need it all the time,. But if it helps KEEP me from getting the sx's from the stress, that sounds good. :)

I, too, literally thrived on stress and adrenaline! Now, I don't know what to thrive on! I am trying to figure this all out, and I know I need meds to help me, but I may start seeing a therapist to help me cope, especially with the kids.

Thanks guys :) and I will ask about the alprazolam on friday for sure!