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Went to a new neurologist today (who was referred to me by the National MS Society) and her conclusion “I don’t think it’s MS”.


Here is a summary of my [B]questions[/B] and "her responses":

[B]Why don’t you think it’s not MS? [/B] "Because the lesions are not perpendicular to the ventricle" (Huh?)

[B]How do you explain the lesions?[/B] "They are UBO’s (Unidentifiable bright objects) – nobody’s brain is perfect" (why does the MRI report say "infarct" like it was some kind of trauma and not just my usual brain)

[B]How do you explain the night of my attack? [/B] "It could have been food poisoning after all" (Yeah right and it went on for 5 weeks and I was not feeling Ill before the attack)

[B]Why can’t I do the heel/toe walk? [/B] Your gait is perfectly normal" (Oh, so almost falling over and unable to take the first step because I kept losing my balance is “normal”)

[B]What is wrong with my eyes? Why do I keep wanting to roll them upwards, have constant pain, decrease in my prescription, and have intermittent blurry vision?[/B] "I don’t know"

[B]What about doing evoked potential testing? [/B] "I can do the VEER test to see if you have ever had optic neuritis in your in your life" (why bother, I don’t fit the classic ON symptoms because my blurriness only goes on for a few hours at a time / not days)

[B]What about Lumbar Puncture?[/B] "I don’t think you need this because your lesions are not atypical"


I also failed the “touch your nose with your eyes closed” test with my Left Hand (right hand was a little better).

So, I have had my second opinion which now matches my first opinion. No neurologist will confirm a diagnosis of any kind, except for “I don’t think it is MS”.

What would you do? Keep pursuing another opinion, pushing for more tests, accept that it is MS, or forget the whole thing ever happened to me?
Lestoby,

I'll give it my best shot,LP is only possitive 70-75% of people with MS.IgG will be high and oligoclonal bands present even during remission.Albumin ratio if high is presence of blood-brain barrier is being damaged.Myelin Basic Protein is high only during an attack.
AN LP is a great way to include or exclude diseases.Mine showed only highly elevated MBP.At that time I was in A major attack.Still not dx yet.I'm pushing for new MRI's since the LP.My understanding is that MBP is high when lesions are forming.Even if you have a negative LP,it still doesn't rule out MS.It can take 2-10 years for a dxs in some people.My neuro explained to me that since the MBP was high and if its MS to expect another attack in 4-7 months.At this point,just treat the symptoms and let me move on.I don't need to deal with another attack,I just broke my hand and the 4 months is approaching.
Lestoby, I hope they do a LP,if anything it can rule other disorders out.
Toni
OK, its even more ambiguous than that. My LP did NOT show oligoclonal bands, but I did have monoclonal banding and one other abnormality (not sure which, am guessing elevated MBP, will need to find out!) In any event, 2 weeks after the LP my neuro said, "It isn't MS, no o-bands." 2 weeks later, after ALL the results were in, I had "2 of 3 positive indicators" in my LP results. SLIGHTLY positive, but positive nonetheless. So, combined with 2 "slightly positive" MRIs, one documented attack and completely negative EVPs I got a dx of "mild" MS last September. Started Copaxone in November.
My neuro studied my files and films. She consulted with other neuros at her practice. She KEPT ON sending me for tests. I love her dearly for not giving up. The attack started in March 05, I got a dx in Sept. 05. Something of a miracle, I guess, given the stories I keep reading here.
Lestoby, here's my point: I'm SO GLAD I got on the meds. I was shocked when, with a dx of "mild MS", my neuro recommended MS meds. I had all along figured I wouldn't need to give myself shots until/unless things got much worse. She explained that starting "disease-modifying" meds AS EARLY AS POSSIBLE can dramatically impact the progression of the disease. While I still have sx, I have not had another attack. My sx have not gotten worse. I've actually noticed that (in my opinion!) I'm more lucid than I had been for 2 years prior to the Copaxone. I haven't yet had another MRI, but I'm sold on the day to day benefits of my daily injections.
I also know a man with MS who, upon getting the dx, couldn't decide whether he wanted to start meds or not. He waited a year. Over the course of that year he permanently lost much of the functionality of one leg. When I got the dx, he urged me to start meds as soon as possible, he regretted his indecision.

I'd love to ignore this whole thing. I ignored sx for 15 years or so, kept them to myself, stuck my head in the sand etc. But I do now have what seem to be permanent sx. I'm blessed that they are annoying rather than debilitating. But since last March, I have not had a single day when I could ignore what has been going on in my body. It just isn't an option anymore.

In my first (rather brief) reply I suggested you dump the neuro and TELL THE MS SOCIETY about the visit. You said the neuro told you your lesions aren't positioned correctly for MS (paraphrased). Do yourself a favor, google for MS brain MRIs. It is a little work, but you CAN find pictures on-line of MS brains. While "typical" MS lesion (is there REALLY any such thing???) are "elongated and in the perivetricular region" I would consider a neurologist to be grossly negligent if they assumed ALL MS lesions were like that. A GOOD neuro KNOWS there IS NO ROADMAP for MS!!!
If you decide to can the notion of getting a 3rd opinion, please, do the REST of Sunny San Diego (my former home) a huge favor by getting that particular neuro OFF the list of MS Society referrals. She is a lazy, callous, ignorant -- (I'm good and wound up now, I won't finish the sentence...)





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