Got the dictation back from MS Specialist, a little confused

So, got the dictation back from the MS Specialist I saw at UCSF and a little confused over it.  Remembered 1 of 2 words, had trouble calculating, extremely nervous.  Fundoscopic exam:  Possible temporal disc pallor OD.  There is slight anisocoria (L>R), pupils rea of medium size, of irregular shape and show decreased light reaction.  Motor:  Tremor in right upper extremity, and much less of her right lower extremity present at rest and only slightly diminished during activity, tremor is of small amplitude and high-frequency.  There is no atrophy. Muscle tone is normal throughout.  Reduced muscle strength (5-/5) of her right sided extremities (strength testing possibly influenced by tremor)  Full muscle strength in her left extremities.  Partially patched reduced sensation of touch, pin ***** and cold of the entire right side.   Dysmetric heel to toe right side.  Swaying on Romberg testing.  

Impression: The patient reports and presents a number of symptoms with a clear temporal and spatial dissemination, which could be due to demyelinating CNS disease.  A number of lesions visible on her brain MRI are suspicious of demyelination and the presence of the CSF-specific O-bands further support such a diagnosis.  ESR, RD, ANA were normal making a vasculitis somewhat unlikely.  However, there is a certain discrepancy between a fairly low lesion load on MRI (7 lesions) and the patient's overall rather pronounced neuro symptoms.   Her irregularly shaped pupils with decreased light reaction warrant further investigation.  Her most prominent and disabling clinical symptom is the tremor.

Plan:  Based on low lesion load, the absence of contrast enhancing lesions and remaining differential diagnostic uncertaintly, we recommend waiting before starting the patient on a DMD for MS.  Copaxone would be the treatment of choice.  I recommend another MRI of the brain with and w/o contrast in about 6 months.  

Any insight on this MS Specialists thougth processes about all this?  

Rachel
Limbolander

[Lulu54]

Hi Rachel,
This neuro all but says you have MS.  Unfortunately this neuro is also a lesion counter and needs to get over the fact that only 7 lesions are visible right now.  If this were before MRI's were invented, you would most probably already have your diagnosis.

Having no contrast enhancing lesions means there aren't any active lesions right now that were visible and that is a good thing.  Your disease is not in an active phase, or at least wasn't while you were having the MRI.  The tremor and the other symptoms you exhibit must be residual symptoms left over from previous attacks.  

Please notice that I keep using the disclaimer *that were visible* because we know that the imaging techniques don't necessarily see everything that is really going on.

I think your neuro is concerned about stepping outside of the typical diagnosis presentaiton and call it MS, for concern that it might be challenged.  

Ok, I'll give the neuro the benefit of the doubt - you definitely want to know that it is MS before you begin treatment.  You would not want to be ignoring some other disease while thinking it was MS, would you?

Those are my thoughts, for what they are worth!

be well,
Lulu

[raekay35]

Oh yeah, one other thing...the doctor never mentioned anything to me why I was there about any abnormality with my eye.  Just asked when the last time I saw an opthalmologist was and that it might be a good idea to go and have my vision checked again..

[raekay35]

Thank you Lulu...I agree with your thoughts, just was a little confused when I actually read the dictation.  I took it as he is saying I have MS without really wanting to come out and say it and start treatment.  The thing is though, the tremor started after my MRI, but my dizziness, blurring vision, memory recall and problems speaking, and imbalance began about 8-9 months ago and have increased in their intensity.  I guess I just don't understand why the balancing act with these docs...When I go and get my second MRI in April and it doesn't show an increase in lesion load or enhancing then will I be told its definately not MS and it's all in my head or will I have to wait and endure more and more testing?  I definately want to find out the accurate dx for what is going on with me and want it to be cautiously examined, however, I also want answers...I guess I'm just impatient and extremely FRUSTRATED.  I don't want MS by any means but if that's what this is then I want to fight it not sit back and give in to it...Just my thoughts, and just venting some frustration...Thanks for listening

[jensequitur]

You're not the only one, sister.  Hang in there and keep looking for a diagnosis.

[Wobbly]

oh goodness... I remember so well, how frustrating this can be.  It took me over 4 years to finally have some sort of answer.  Are the Dr helping with any symptoms that come up?  

keep a record of your symptoms and if you get another flare up...call them before the 6 months and let them know.

take care and we are here for you
wobbly
dx