Diagnosed only (please?) [Archive] - BrainTalk Communities

Matt

11-24-2006, 08:10 PM

Definitely symptoms. I also had three spinal chord lesions and a positive LP.

They have repeated my MRIs over and over again to see how well the medication is working.

After all my spinal chord lesions disappeared, and there were no new brain lesions, I started flopping back and forth between definite and probable MS. I'm now awaiting to hear back my test results for devic's disease. The test didn't used to exist. If it's positive, than it's devic's. If it's negative, than it's definite MS, and the diagnosis is primarilly based on symptoms.

*Joy*

11-24-2006, 08:24 PM

Cutter,

My diagnosis was based on MRI results (lesions), LP results (bands) and my symptoms. I originally presented with TN, slurred speech and numb tongue. I was also tested for lupus, lymes or B12 deficiency.

I've had repeated bouts with ON over the years starting in 1988 so there was a strong reason to suspect MS.

I have an MRI at least once a year. I recently had one in September. There was a new lesion.

My neuro didn't talk with me about a prognosis. Nor did I ask. I just try to live day-to-day.

You didnt ask about MS exascerbations or residual problems but I had a few over the last three years which have left me disabled.

Any paticular reason for asking?

Jules A

11-24-2006, 08:32 PM

MDM

11-24-2006, 08:47 PM

I was diagnosed based on lesions seen on MRI, abnormal neuro exam and symptoms...probably in that order of significance.

I have been having 1 MRI per year since seeing the MS specialist, the last one being in July of this year. The last MRI showed no change in lesion size or number. (I've been on Copaxone for last year and a half).

My disability score is very low and my neurologist has told me that "he thinks I am going to do very well with the MS." Seems like an oxymoron to me, but I'll take it.

MDM

tinydancer

11-24-2006, 08:51 PM

Hi all,

I was dx with MRI and symptoms. I have had 6 MRIs in 3 years, each showing more and more lesions every time. I have been on Copaxone for 2 years and Betaseron for 1 now, I see my nero every 6 months.

Take care all
tinydancer

Cat Dancer

11-24-2006, 08:53 PM

23 or more years ago when I was diagnosed, they didn't HAVE MRI's...

I was diagnosed on clinical signs -- the neuro told me years later that he was sure I had MS when I walked into his office, by my awkward gait alone. He went on to do a spinal tap (the primary diagnostic tool then) and evoked potentials, which confirmed it. Several years later, when MRI's were first being introduced as a tool to diagnose MS, he had me undergo one -- and sure enough, there were lesions.

I've had only one MRI since -- about 12 years ago, right before starting Betaseron, but none since. I don't see any point in repeating MRI's (or spinal taps)...they're diagnostic tools, not treatment tools. I'm comfortable with the diagnosis, never had any reason to question it, and the Betaseron has dramatically reduced the numbers of exacerbations I had been experiencing (actually, they've stopped altogether), so I keep on injecting.

euphoniaa

11-24-2006, 09:20 PM

I was dx'd with "almost 100% definite" MS by a physiatrist the day after my first MRIs of the brain and C-spine without contrast. I had only gone to him because of a tremor in one finger, so I didn't even bother to ask him what he was looking into my brain for.

I was then sent to a couple of neuros who were from the "It's not MS until *I* say it's MS" school. So I got another dx 3 months later after they found oligoclonal bands and every other indicator in my spinal fluid, along with positive evoked potentials.

I've since had 2 other sets of brain MRIs with contrast that show no change and no enhancing lesions.

As for symptoms, although I have lots and lots of minor ones :), my neuros have never been interested in them. My current neuro's staff does a bunch of tests at every visit and the reports all show no significant change -- all tests are "within normal limits" and my walking speed has improved slightly.

If I had been taking meds since my dx, we'd call me a major success story -- but I haven't. :)

Cutter

11-24-2006, 09:23 PM

graymatters

11-24-2006, 09:29 PM

Diagnosis based on symptoms of slurred speech, cognitive issues, headaches for 6 months...follow up MRI revealed multiple lesions of varying sizes and ages throughout the brain.
LP confirmed diagnosis 1 month later.
Repeat MRIs every year, then almost every 3 months after accident. New lesions in cervical spine.

Cutter
"I want to see it...the pictures...the proof"

Don't yo have your MRI films? copies to see lesions in your brain or spine? What other proof are you looking for when you say pictures

Pegakafarmgirl

11-24-2006, 10:00 PM

I'm like Cat,, a spinal,, it was over 25 yrs ago, { slurred speech, staggering,whonky vision}, I have had so many MRI'S since then,, and 3 neuros,,

one day at a time is what I do,, every day is a adventure,,

*Joy*

11-24-2006, 10:06 PM

I don't know. I'm just trying to predict the future, I suppose.

I want to see it... the pictures... the proof. Anyone can say,"ouch!"

I guess that I just wish that I could just write this off as a stupid mistake.

Cutter,

I understand this. Every time I have an MRI I think "This will be the time when they discover it's all been some horrible mistake." I wouldn't even be mad, I'll waltz out of there one happy woman.

It's believing the proof that's hard sometimes. It doesn't always matter what a doctor tells you or even if you trust that doctor. It doesn't even matter how disabled you may become... you can still cling to denial.

I understand this, Cutter. And my heart goes out to you.

*Joy*

11-24-2006, 10:07 PM

I didn't realize so many of us have slurred speech.

Interesting thread.

Annie123

11-24-2006, 10:54 PM

Diagnosed by clinical symptoms, documented past medical history, MRIs and evoked potentials.

A neuro-ophtholmologist (the optometrist at Walmart made me the appt) who ordered MRIs diagnosed me with ON and started me on steroids -- he also diagnosed MS. I then went and got two more opinions from neurologists before injecting myself with any disease-modifying drugs.

Eleven years later I slid into SP and am on Novantrone with daily steroids.

Btw, slurred speech years ago, but it resolved.

agate

11-24-2006, 10:58 PM

How was I diagnosed? The neuro I went to (with my arm in a cast, after yet another fracture from yet another fall) suspected "a demyelinating disease" but put me through quite a few tests to confirm it. In 1980 there was no MRI, and I was unwell enough at the time that he wanted to spare me the LP.

So there were several office visits where he did the tests that neuros do, and I went to an ophthalmologist where visual fields testing was done (abnormal) and ON was presumed after examination of the optic nerve. I also went to an otolaryngologist (I'd had vertigo episodes and nystagmus and hearing loss), where I had an audiogram, electronystagmography, caloric testing, and a brainstem auditory evoked response test. The ENG revealed nystagmus and a lesion in the pons region.

I also had an EEG.

Since then I've had two MRIs, and both of them showed MS lesions. I also had a visual evoked potentials test a couple of years ago, which was severely abnormal.

Joy, I've had slurred speech too, but it came on years after the diagnosis.

DBG

11-24-2006, 11:00 PM

Mine was dx'd on a positive MRI showing multiple lesions in brain and one in spinal cord and evoked potentials. My LP came out normal but based on my history and other tests my Neuro made the dx's and started me on Copaxone. Follow-up MRI came about 6 months after dx's and showed no change. When I asked my neuro about prognosis he said that it's unpredictable. Some do better than expected and some progress faster than the Dr originally thought. Basically he doesn't know.

PattiLee

11-24-2006, 11:22 PM

In one week:

Visual field loss leading to a Dx of ON and then an MRI. Nystigmus, blah, blah.

When it all lines up, the Dx is a piece of cake. Took 6 days from trying to get my eyeglasses changed to an MS Dx. What a surprise. :rolleyes:

Yeah, and everytime I get an MRI, I'm hoping that it's all a great big mistake. It's not, but I'm a dreamer at heart.

PattiLee

SalpalSally

11-25-2006, 12:21 AM

Hi Cutter.:) In 1975/6 when I was young and sweet, the neuro put me in the hospital for a week of tests. Most of them were to eliminate other than MS illnesses...tumour etc....

I had a Myeliogram(sp)..that's when they put you on a tilt table and run a dye through your spinal fluid, while tilting you forward and back. Fun trip..NOT! They, of course, did an LP and found the telltale protein and bands.

The good news is, I didn't have a tumour..;) The bad news is, I was DX with MS. Neuro said (prognosis wise) that I may not have another attack for 20 years, so I chose to be in denial. He was right...My next attack was in 1992/93...almost 20years.

I am now SPMS, on LDN and not progressing, at the moment. (except in age :eek: ) That's my story, but you can't compare my story and your story or anyone else's story. With a few exceptions, we are all pretty much unique in our progression and experiences with MS.

My advise...stay in denial, as long as you can.;)

graymalkin

11-25-2006, 12:37 AM

I was diagnosed on the basis of symptom history dating back 20 some years, confirmed by MRI. No other testing except the basic quick-and-dirty neurological workup I get each time I see my neuro. No repeat MRI since the first one, over 3 years ago.

I was RRMS when diagnosed, changed to SPMS within a year.

I guess I don't feel the need to have further testing to keep track of what in my case is a pretty run-of-the-mill case of MS, but in your shoes I'd probably feel the way you do.

graymalkin

0357

11-25-2006, 05:10 AM

I was diagnosed with a MRI and symptoms. But when my symptoms got worse, I sought a second opinion. That neuro gave me 2 spinal taps (looking for the indicators of MS which did all show up in the 2nd spinal and to rule out other possible diseases) and 2 MRIs. He sent me to two MS specialists. Because the speed at which my MS progressed during that 4 year period I was diagnosed with Progressive Relapsing MS with remissions. I went to 9.5 on the Kurtzke Scale.

Since, my MS has backed off me and my present neuro says I have Relapse Remitting MS with much cognitive and mood disabilities. Luckily, my moods are controlled with medication.

Cutter

11-25-2006, 07:16 AM

Cutter
"I want to see it...the pictures...the proof"

Don't yo have your MRI films? copies to see lesions in your brain or spine? What other proof are you looking for when you say pictures

I mean, in so far as how quickly it's progressing... or maybe I'll have one done and the lesions will have miraculously vanished... maybe I can go back to blaming all of it on my being just a nut case. Maybe I can actually hope to get better.

rdmc2

11-25-2006, 08:35 AM

Many lesions and symptoms. I've never asked about my prognosis as my disease definitely is RRMS. With each relapse being pretty classic, my hang around symptoms have progressed over the years, but it's been a slow progression. I do not have regular MRI's...neuro doesn't believe in them as long as I'm relatively stable, and I like living in denial a little (I really don't want to know if my lesions have increased.)

rdmc2

11-25-2006, 08:44 AM

I didn't realize so many of us have slurred speech.

Interesting thread.

Joy,

I've had slurred speech from the beginning too. When I walked into my present neuro for the first time and started talking to her, before she said anything else, she asked if I realized my speech was affected. Duh, yeah I realize it, LOL.

Cutter

11-25-2006, 10:58 AM

*Joy*

11-25-2006, 12:47 PM

Yeah, the slurred speech... They just accused me of being drunk. The tremors they blamed on my needing to be. It's amazing just how many MS symptoms can be written off if you just say that the person is a mentally ill alcoholic. :cool:

As a woman, I've heard the same crapola. Somewhere in my files someone has probably defined me as being histrionic and/or hysterical. For all I know, it may even say "silent alcoholic" when I haven't had a drink in over 25 years.

I happen to have some great doctors now (I'm thankful for that) but I've ran across some doozies too. I can sympathize.

Cutter: I mean, in so far as how quickly it's progressing... or maybe I'll have one done and the lesions will have miraculously vanished... maybe I can go back to blaming all of it on my being just a nut case. Maybe I can actually hope to get better.

No banana, Cutter. You ain't a nut case.

MS is an unpredictable disease. You certainly could improve. Your progression could halt or slow. Why not? Will all your lesions suddenly disappear? I don't know what the odds are for that (though I'm sure amongst all these brilliant people here someone knows the answer to that) But even if the odds are poor in your favor, you could be the one who steps out of that long line of statistics.

I think it's good to believe you can get better.

Denial is good. I know it served me well for a couple of years.

I have to say though that I think my life became more peaceful after I accepted I have MS. It broadened my perspective away from myself and back out into the world again. I spent a couple of years pretending I didn't have MS, yet in retrospect I realize just how stressful it is to maintain that position.

Wishing you the absolute best, Cutter.

*Joy*

11-25-2006, 12:52 PM

Joy,

I've had slurred speech from the beginning too. When I walked into my present neuro for the first time and started talking to her, before she said anything else, she asked if I realized my speech was affected. Duh, yeah I realize it, LOL.

I won't say what I was scream/slurring the first day I saw my neuro. It's a miracle she didn't run away. She understood the pain I was in, bless her.

One thing I've noticed is that when my speech is slurred I hear it long before someone else can hear it. I think I sound like Elmer Fudd but apparently it's not that bad to someone else listening.

My slurring gets worse as the day wears on. As I grow tired.

rdmc2

11-25-2006, 01:28 PM

I won't say what I was scream/slurring the first day I saw my neuro. It's a miracle she didn't run away. She understood the pain I was in, bless her.

One thing I've noticed is that when my speech is slurred I hear it long before someone else can hear it. I think I sound like Elmer Fudd but apparently it's not that bad to someone else listening.

My slurring gets worse as the day wears on. As I grow tired.

I think people close to me are pretty in tune to the slurring. Mine gets worse if I'm tired or as I'm heading into an exacerbation. My niece, who lives close, and I talk to her quite often. She told me that she knew I was headed into an exacerbation last go because my speech had been "slurrier" (I think I just invented a new word) than usual.

One of my sister lives out of the country and I don't really "talk" to her much, we mostly communicate via email. But the other day I was talking of the phone to her and she asked if I was sucking on a piece of candy. I wasn't, it was just my normal slur.

graymatters

11-25-2006, 04:22 PM

Cutter
The photos and pictures can't be used as a measure of MS accurately anymore really. If I looked at the MRIs over the years, lesions come and go, get smaller, bigger..you name it

According to recent studies, MS activity occurs throughout the brain and is not all visible on MRI, so even the areas they thought were healthy aren't. Grey matter is full of MS, like a ticking timebomb.

I wish like you to wake up and it will be just a dream. I will be the old me, who can read and type, think clearly, walk without falling, speak the Kings English not martian
someday

'Lissa

11-25-2006, 04:37 PM

I was diagnosed based on MRI and symptoms. MS specialist agreed that I didn't need LP if I was comfortable accepting my dx and starting therapy.

I've had 1 additional MRI in the two years since, I'm not sure if I will have another unless my condition starts to deteriorate.

Ditto - my history pretty much exactly. Based on the MRIs, symptoms, and the fact that my mother was diagnosed with MS, I have been told I have probable MS. When I push my neurologist for something more definite, he says there is no better explanation than MS for now.

Maine/Boston

11-25-2006, 04:58 PM

MS sucks where is the cure. I don't want this anymore, I jst wish someone could tell me WHY. Some people say that MS has changed their life for the better. Not me where is the cure. WHERE

I am not doing too well today. I hate this feeling and why can't this go away, Just as it came.

Jan(:

JeanieI

11-25-2006, 05:45 PM

I was diagnosed based on symptoms, an MRI that showed lesions and an LP that showed o-bands.

I don't plan to repeat the LP, but will likely have an MRI some time this coming year. I'm interested in seeing if the lesions have changed after being on Beta.

Virginia

11-25-2006, 07:19 PM

My diagnosis was based on MRI, LP, and symptoms. I have MRIs almost every year. I have been on A, C and now R. According to the last MRI hasn't been much change in leisons since original six years ago. I will have another after the first of the year.

I too wish they would just say they made a mistake and that if they give me a certain medication all my symptoms will go away and I can get back to a normal life. Like someone else said I wouldn't even be mad.

Virginia

Matt

11-25-2006, 08:09 PM

(If they were, what did your Neuro tell you, in so far as your prognosis was concerned?)

I have had two or maybe even three MS specialists suggest concern about my prognosis. I've blocked out the details, but I think it might have to do with my first mri of the thorassic region. I've also been given some more encouraging feedback too, more recently.

snack

11-25-2006, 11:32 PM

Diagnosis based on MRI and history of symptoms, first MRI probable MS, next one a year later MS. Did not discuss prognosis I never asked as by that time I had read up on MS and knew that any prognosis is anybody's guess one can just hope for the best and live to the fullest. I just and discussion about treatment options after my 'firm' diagnosis. Got MRIs again 10 after diagnosis due to some new symptoms.

*Joy*

11-26-2006, 04:11 PM

Matt

11-26-2006, 05:30 PM

Joy, a general practicioner diagnosed me with scanning dysarthria many years before I knew anything about MS, so it mustn't be that uncommon as a symptom. Like most of my symptoms, it went away, though.

Just to answer cutters question better...at different times, I have been seen by neurologists with abnormal walking, detectable weakness, abnormal reflexes, bilateral gaze weakness, vertical double vision, gaze evoked horizontal nystagmus with a torsional component on rightward gaze, abnormal pupillary responses, and optic disc pallor. My sensory examination and my hearing have always been normal, but my somatosensory and brainstem auditory evoked responses have been abnormal.

Cutter

11-26-2006, 05:35 PM

Matt

11-26-2006, 05:51 PM

So, no MRI or LP?

Yes. I had three spinal chord lesions and a positive LP. The spinal chord lesions have disappeared over time. The second neurolgist I saw told me that back in the days before MRI, they would not have needed to order any tests, but nowadays they are focussing a lot on MRI.

Cutter

11-26-2006, 06:13 PM

Yes. I had three spinal chord lesions and a positive LP. The spinal chord lesions have disappeared over time. The second neurolgist I saw told me that back in the days before MRI, they would not have needed to order any tests, but nowadays they are focussing a lot on MRI.

I'd be SO cunfused...

and I'm rather testy because of your experience.

grrr

argh

stupid dummies.

I want to (more than) kick their shins.

Matt

11-26-2006, 09:07 PM

I can see why you are curious about your MRI cutter. If I had a lot of lesions, I would also want to see if there are new lesions appearing over time.

Cutter

11-26-2006, 09:59 PM

I can see why you are curious about your MRI cutter. If I had a lot of lesions, I would also want to see if there are new lesions appearing over time.

Sometimes, Matt, I just want to keep an eye on myself... I need to know how much is fear (or psychosomatic), and how much is probably based on something more tangible. I spent years doubting myself. Old habits die hard. I trust the MRIs more than I trust myself.

lady_express_44

11-27-2006, 02:29 AM

I had a transverse myelitis attack in 1991, which led quickly to paralysis. They did a spinal tap, but it was botched in a big way. I never did find out the results of that test, if there were any, but I was dx with probable MS at the time. I refused a MRI as I was too dubious about any more testing.

When I found out that there was nothing that could be done to potentiallly change the course of the disease, at that time, I went into denial. I definitely made some lifestyle changes (downgraded my career, looked after my health better), but I chose to ignore all the symptoms for many years.

In 2003, I had another paralysis attack. Since I could no longer function at work . . . I didn't have much choice but to agree to an MRI. I had lesions in both my spine and brain, and the dx was confirmed. I still didn't believe it was really MS for at least another 18 mo - 2 yrs though.

I've been through periods, maybe because I was really grieving, in terrible pain, or deteriorating quickly/having attack after attack . . . where I didn't know if I was loosing it or it was the disease process. Since I have also had the opportunity to heal, and improve, I know that it is the disease itself that can make ME feel as though I am going mad.

Cherie

Tylerhenry

11-27-2006, 02:08 PM

Hello, I was diagnosed very quickly after having ON, L'hermitte's, sensory issues (numbness, tingleing), and trouble peeing. I had a round of physical tests like being poked with a sharp thingy and telling the doc's where I could feel it blah, blah, blah...but then it was an MRI that made them decide for sure that it was probable MS which, after a few months, became definite. Good times!

Like some people have said before, I find it best to live day by day. This disease is so unpredictable that I don't find it particularily helpful to worry about what MIGHT happen. I just know what IS happening. But on my most recent mri my neuro said that some of my lesions had lessened or dissappeared altogether. Yayy! But I hadbeen feeling better, so I kind of knew that anyway.

Stay cool,
:)
Tyler

karilann

11-27-2006, 02:55 PM

I was diagnosed by mri (more than one lesion) and time and space between symptoms (numbness in '90 and again in '02). No other tests were made except the AntiNuclear Antibody test was elevated which shows there is inflamation somewhere.

Agent

11-27-2006, 07:15 PM

I was diagnosed after two ON attacks spaced 10 months apart. Each attack also carried with it many of the other problems in a full blown relapse. When I finally went to the Emergency Room, I was given a CT Scan and LP. It was on a Saturday night, so I had to wait until Monday for the MRI.
MRI showed five lesions, two that led to the second attack. LP was a positive in the diagnosis.
So I guess it was Symptoms, MRI, LP and the time and space difference of the two attacks. Can't remember is the CT Scan showed anything.

xo++

11-27-2006, 08:21 PM

I was diagnosed based on two clinical exacerbations (numbness, L'Hermittes each time) backed up by about an inch lesion (each time) on my spinal cord MRI (thoracic cord, 1st flare, cervical cord, 2nd flare). My brain MRI was clear. The neuroradiologist reported “probable MS” based on the first MRI, and the second exacerbation and MRI confirmed the diagnosis.

My spinal fluid revealed no O-bands but slightly elevated proteins, and my somatosensory evoked potentials were abnormal (consistent with a problem in my spinal cord).

My neurologist was concerned about my prognosis because he suspected that those with a spinal cord presentation of MS have a worse prognosis, due to less plasticity in the spinal cord than brain.

It has now been 10 years since my first exacerbation. I have no symptoms, other than the occasional odd tingle or twitch here or there, no disability, and have not had an exacerbation in over four years.

I am convinced that MS is several diseases rather than one, and believe that I have whatever is mildest. And that my genetic makeup is more favorable to my prognosis than is common. I steeped myself in research the last 10 years, and generally have acted on what I learned, but others do much the same with a worse outcome.

Mark

elizabeth

11-28-2006, 05:30 AM

I was diagnosed 7 years and 3 days ago - yippee, an anniversary! :p It was the day before Thanksgiving, and my dx was based on MRIs, VEPs, LPs, and symptoms. It was a pretty complete and succinct picture really; all I needed was a neurologist with the huevos to put the disgnosis down in writing and start me on ABCR's.

For whatever reason, I found myself with a "no doubts" classic picture perfect case of MS and a really wishy washy neuro who said things like "I'd hate to burden you with a diagnosis at such a young age" and "once this is on your medical record there's no going back, so I'd feel better if we waited a while to see what shakes out."

In the meantime, my life was going to Hades in the handbasket! I went from functioning as a high-level college administrator and professor to barely able to speak a complete sentence and unable to walk four steps without walking into something or falling against a wall. I couldn't see in half my visual field (ON) and had hemiplegia -- really fun (NOT!), but this doctor didn't think it was time to get moving on ABCR's?!

I found a new doctor REALLY FAST... :eek:

I'm still with diagnosing doctor, seven years later. He's been great, and he takes fabulous care of me. Things have not been easy, and in the first four years, I repeated MRIs about every 6-8 months. Now I only have an MRI once in a blue moon if things are really awful -- i.e., last year when a brain stem lesion started messing with my respiration and heart rate.

I have not repeated LPs (why would I want to do that??). I have had visual field tests to ascertain the extent of my vision and any permanent damage, but I have not repeated the VEPs. I have to see about getting prisms for my glasses, as I have frequent problems with double vision because of the MS, but that's just one more thing.

I think some doctors repeat MRIs to track damage and see whether your ABCR is doing you any good; some use the MRI to decide whether you are having an exacerbation, believe it or not. We have one of those here in town -- it makes the insurance companies SCREAM bloody murder and costs the patients LOTS of money, but she won't prescribe steroid bursts or any meds unless she's got an MRI with enhancing lesions. She's an odd one, though. I wouldn't see her for MY physician, but some apparently like her OK... She is the QUEEN of unnecessary tests, but some like being poked a lot! :rolleyes:

I think less is, well, less -- the less I have to put up with, the more quasi-normal my life can be. I like it that way, and my neuro seems OK with that. We function with testing as is necessary, but necessity is determined by both of us in consultation and when things have dramatically changed in some significant way. We don't just go testing for a "look see".

FWIW. I hope this helps. :)

Cutter

11-28-2006, 08:46 AM

I actually liked my diagnosing physician, but I don't live in that State anymore. The Neuro I have now won't be my Neuro for much longer, as he will soon be finished doing his residency. From what I can tell, once he's done, he's high tailing it out of here, and not only don't I blame him, I wish I could follow him out. The health care system in this State is atrocious. I've never experienced such substandard health care as I have here, and saying that is being nice about it.

terrijean

11-28-2006, 02:16 PM

Hi Cutter and All.........

I know you are all diagnosed and I'm not, but at my initial onset of MS symptoms 3 1/2 years ago, I thought I had a stroke initially because I was under severe financial/personal stress.

Someone on the Mellen Center neuro forum told me that you don't get slurred speech from MS and basically told me it wasn't MS.

It started with TN and then with all my other stress plus getting a tooth extraction while awake (not tooth pain after all), I started with blurred, double vision, paresthesias all over my body seemed worse on the right, face all the way down. I too have right sided tongue numbness with SLURRED SPEECH, later other symptoms came on tremors etc.

So far, the last MRI that I had was 1 1/2 years ago and nothing has shown up on any of them.

Is it true that some are so small they come and go, and the MRI does not pick them up OR are they only evidenced during a relapse or exacerbation?

I am going the end of January to The Cleveland Clinic - Mellen Center for another opinion. I am having excessive foot sprains bilateral since spring and noticed my right foot - turns inward when I walk; never had this before until late.

Sorry for the intrusion, but your post and others' postings are very helpful!:)

Matt

11-28-2006, 06:04 PM

TerriJean,

There might be different types of MS. A lot of people who fulfill the criteria for definite MS, but they have no brain lesions, are now being tested for neuromyelitis optica. That's an uncommon form which doesn't show on brain MRI. It does show on the spinal chord, but the lesions disappear over time, when you are in remission.

msmaggie

11-28-2006, 06:35 PM

I presented with diplopia, had an MRI the next morning, and was dxd. Did have an LP, but after (or during the same visit..) the neuro gave the the MS news. O-bands did show in the LP. There was no question as multiple lesions were seen, plus my father had MS, too.

Have had a lot of MRIs, mainly because I was in a drug study. Now I get one about once a year, mainly to look to see if the meningioma I've had removed is growing back. (they had to leave some of it....)

It's been 15 years, and I've luckily had a slow course. Fatigue is my worst issue, walking is second.

msmaggie (formerly MagChem)

Abby2006

11-29-2006, 01:43 AM

MRI

Abby

mark53

11-29-2006, 12:33 PM

Cutter

11-29-2006, 07:40 PM

Cutter, i was DXs by MRI (12/30/2003) that showed BLACK HOLES, and told "THIS IS DEFINITE MS" and you have had MS a very long time, that was the local neuro, he allso did what he called shock&poke, and other test. i then went to a MS doc. in Detroit (4/6/2004)-(WSU) he did a MRI-VEP-bloodwork & more, and he said you are SPMS and you have had MS at LEAST 20-25 yrs. i see the MS Doc at DMC/WSU every 6mo's, he says my MS is mild/benign, and it should stay that way and he thinks i can stay on my feet into my 70"s that would be about 15 yrs :eek: ! i hope he's right. Cutter, i try to learn as much as i can about MS and keep myself as fit as i can. i look at everything this way.if its not good for me then i don't want it.

I try, but there are a lot of "outside forces" which push me to question myself when I really shouldn't.

"If it ain't broke, don't fix it." worked for me forever (it seems). Now? sheesh. It seems like it's more, "If it ain't broke, get busy. It will be soon."

Doing very well (by my very strict standards) with the meds though. I'm very familiar with my "baseline".