Officially in the "Possible MS" club

[ch81]

I had my follow up with new neuro today after completing additional thoracic MRI, evoked potentials, and blood work. Everything came back normal from those tests. Needless to say I was left confused again....

My doctor said that given my clinical history of 3 attacks, my abnormal neuro examinations (hyperreflexes--left side prominent, poor coordination etc). and the brain MRI indicating 2 small lesions, and all other issues being ruled out; I have a very good case for MS. But, because everything came back normal in these additional tests, he does not feel he can give me a full diagnosis beyond a shadow of a doubt and start treatment. So I've been given the title "Possible MS". One step out of limbo land, with one leg lagging behind!

For now its new MRIs in 6 months and see the neurologist every 3 months just to check in for the next year, or unless I have another attack (then I go right in). Though I really wanted that clear answer, I'm finally realizing it doesn't always happen w/ MS. So here is where I am for now...

[6-paq]

Hmm....  I didn't catch that you've had 3 "attacks".  And those 3 attacks have been within 8 months.  That would fit the diagnostic criteria as was pointed out above.

I would also assume that your demonstrated hyperreflexia, weaker side and poor coordination would count as a "clinical lesion"?

I don't know about waiting 3 months and the DMDs.  I don't think that it wouldn't be "safe" to wait.  

On one hand, I would think that 3 months wouldn't matter much, but if you have another attack before then, that could leave you with more damage.  Buuuuut, some of the DMDs wouldn't be "effective" within that 3 month period anyway (I'm thinking of Copaxone, which I believe, takes 9 months or so??).

I haven't had any abnormal reflexes, etc. right now, so it's easier for me to "wait it out".  I've only had one "attack", if I'd even call it that, and just the abnormal brain MRI with 3 lesions (2 punctate and 1 large one).   The vast majority of the symptoms that I presented at my first neuro visit have been explained by other causes.  I only have a fine bilateral hand tremor that is unattributable to any definitely causes at this point.  

If I was in a position where I had hyper reflexes and unilateral weakness, I would feel differently.

I know, I'm not much help, but I can truely understand where you are at right now.  After doing many years of allergy injections when I was young, I can't stand the thought of having those daily injections.   We are on that mental see-saw.

Take care, Pat :)

[ch81]

Thanks... makes me realize I should have come up with good questions before today's visit. I am in the US, and I'm actually on my 2nd neuro. The 1st just kept telling me to come back if I had another attack (I did twice) and claimed he just didn't have a clue what it could possibly be (suggested stress or virus).

I'll have to read through the criteria when I'm more awake tomorrow. It makes sense with 2 definite attacks and 2 lesions but who knows what these neuros think sometimes... oh the joys of limbo land. The more I read the more confused I am.

Do you think there is anything detrimental to my health by waiting these 3 months and seeing what happens? Of course if I have another attacked I'd be banging down doors, but if I were to go 3 months then push for more info is that safe? I guess I'm scared of the thought of DMDs but also of not getting them soon enough... I've been lucky enough to be feeling fine since my last episode in early April, and that one was very mild compared to Oct. and Jan.

[Quixotic1]

Well, in the US, if you are here, the majority of Neurologist do NOT believe that they must be 100% sure in order to treat for MS.  It has been well shown that the Disease Modifying Drugs are most effective when used as early as possible in the disease.  Most will treat if the likelihood is >80%.  

I bumped up the McDonald Criteria explanation that I wrote.  Please read it carefully.  You may very well want a 2nd or 3rd opinion on whether you are likely enough to have it.  Even the Mayo Clinic who is advocating withholding the DMDs for people having a very benign course, I believe would treat someone who is highly symptomatic - which, if I remember, you are.

I think your neuro "sounds" like he is being excessively conservative, given the rest of the neurologists treating MS.

Quix

[IUMOM2]

Congrats? I know how it feels to be one step closer to getting an answer. It's good that you have a neuro who is working with you.

I've been in limbo for four years. I'm wondering if the two attacks you have were witnessed by the neuro? I used to think that your history of attacks could be taken into consideration when making a dx. But, neuros don't seem to always do that.

In my case, I do feel as if I meet the criteria  (four or five attack, abnormal neuro exam, lesions on MRI, and other abnormal tests). But, I still can't get a definite dx. It sure is frustrating.

Anyway, I didn't mean to go on about myself. It's good to hear of a fellow limboer getting closer to an answer.

Good luck.

[ch81]

Thanks for the lead! I did look up the McDonald Criteria... I found a link here: http://www.mult-sclerosis.org/DiagnosticCriteria.html

And I've definitely had 2 or more attacks, and 1 definite lesion (small at 4mm) and the other is very small 2mm (so maybe thats why he's waiting for "dissemination in space"?).

This is what I copied for that website:

Clinical Presentation:
    * 2 or more attacks (relapses)
    * 2 or more objective clinical lesions
Additional Data Needed:
None; clinical evidence will suffice
(additional evidence desirable but must be consistent with MS)

Clinical Presentation:
    * 2 or more attacks
    * 1 objective clinical lesion
Additional Data Needed:
Dissemination in space, demonstrated by:
    * MRI
    * or a positive CSF and 2 or more MRI lesions consistent with MS
    * or further clinical attack involving different site

It seems to me my doctor is putting me in the 2nd category by waiting for a change in MRI, new attack etc maybe? Hmmm. You definitely bring up a good point... is this something I should push now? Or is it better to wait until my next follow up in 3 months then ask about? He did catch me a bit off guard with the normal findings seeing that he was so sure they would come back abnormal during my previous visit. I really wasn't prepared to ask the right questions for these results.

Anyone know the difference between Poser and McDonald criteria? I guess w/ Poser I'm clinically probable...

[Momzilla]

Hi!  I would congratulate you on your new status, but somehow that just doesn't seem right....

Although I'm glad your doctor is entertaining the thought of MS for you (only because it will help you get treatment), I think you already meet the McD criteria.  Someone correct me if I'm wrong.  

I'm at work right now and don't have a minute to look up Q's great info page, but I believe that the criteria states that with two attacks separated by time and space (different areas affected at different times) you only need two lesions detected by MRI.  Sounds like you have that.  Maybe I'm rushing in and getting this wrong, but, if you do have MS, we want you to start treatment, not wait around for another attack.

I think you should ask your doc about the criteria, and if he balks, ask your internist.  Get another opinion from an MS specialist.

Somebody stop me!  

I am glad about your doc acknowledging things for you, but I just don't think he's going far enough....IF I understand the McDonald Criteria.  SOMEONE CHECK before I make a COMPLETE fool of myself!

I hate to stir things up and run, but that's just what I'm going to do.  My boss is lurking and I should be working!

Be back later.  Hope you guys have answers for me about old McDonald by then!

Feel well!

Zilla*  

[6-paq]

My neuro usually asks me what's new and has me do more in-office exams.  

My first MRIs and an EMG/NCV were back in Feb 2007.  My LP was in March 2007.  During the subsequent 2 month follow-ups after the LP results were in, he ordered a VNG, BSEP, SSEP, and VEP.  

I've also had Vision Field Tests (normal) and a lumbar spine CT scan and MRI due to a PCP diagnosing stenosis.  He also ordered some PT for my lower back/hips.  Also, a bunch of other blood tests, etc. done to rule out mimics within those last 16 months.

When I first got the results of my LP and bloodwork back in March, my neuro told me that the LP can be "normal" early in the MS disease.  

He will provide symptom management at this point (but I don't need it).  I've also been told to come back immediately if something is wrong.  If not, I just see him during the follow-ups.

I'm glad that you have a good neuro that is working with you!  He seems very thorough!!

Take care, Pat :-)

HTH!

[ch81]

16 months! You've definitely had 1 leg in limbo land! During these 3 month follow ups do you have any more tests? Or is it usually just check in time?

I have had a spinal tap and Evoked Potentials (both normal). He did mention a new spinal tap maybe in order in 6 months since he did see what could easily be a typo in the lab report. When they tested 2 tubes 1 had no cells and one had over the limit of normal... but no O bands in either.  My first neuro never mentioned this, and this new one thinks it might have just been an error, but leaves room for retaking it.

I'm lucky to have not had an episode since March... but during all 3 no one ever talked symptom management, so I'm not nearly as scared of it coming back knowing that a good neuro will work on this with me.

[6-paq]

Welcome to the club!   So sorry you don't have any answers though...

I'm in the same spot and have been for 16 months.  I had a repeat MRI 13.5 after my first and it was stable ~ no new lesions, no enhancement.  Still can't rule MS out or in.  

I've been seeing my neuro every 2 to 3 months.  I go back on the 16th.  No progression in those 16 months.   My only abnormal test has been my brain MRI.  Everything else is "normal".

Did you have a spinal tap and evoked potentials?  If not, that could point you further towards some diagnosis.

Are you in need of any symptom management?  If so, I hope your neuro is helping you.

Take care, Pat :)

[Fluffysmom]

I guess one step out is better than several steps backwards (my life).  Probably doesn't feel like it, though.

I haven't memorized the McDonald Criteria, but it does sound like you're awfully darn close to a diagnosis.

You have a good attitude, accepting what is.  I hope you get your clear answer soon.

Kathy