Not MS...says the specialist...dead/leaking brain cells...WTH??

[Twinsmom06]

I have been absent for some time as I process my joy but also struggle with the way he explained things. Doc says symptoms can be chalked up to my low B-12 (mind you it is no considered low in my blood work...just on the low/normal side).
Ok...I will buy that. When asked why I have so many lesions on my brain and why every other test came back negative, he said "some people just have lessions and the lesions you have don't show the dawsons fingers so they can not be attributed to MS". Hmmm...well then why do some of the wonderful people on this board only have one or two lesions...not in this area...and still have an MS Dx when clinically...they don't present with severe symptoms?

So now my head is spinning because I think that either there are a whole lot of people who are Dx. with MS that don't have it...or my doc is crazy! Mind you...he is a highly specialized doctor with many years of experience working at a major teaching hospital.

He said he is doing a study right now and he is finding that many of his "healthy" volunteers often have lesions...and some with many. "Are they sick...no". He says they are finding women who have been on birth control for more than 3 years (1/2 the darn country) are showing up with these lesions because it is "killing" brain cells...but not in an alarming amount. He said when a cell dies, it releases water and that water is what is showing at a hypertensity on the MRI. But that I don't need to be concerned about it. Really???

I want to believe him and move on. I act like I'm happy with the news and that I have no more doubts...but inside...I'm struggling a little with the explaination of my lesions.

Any thoughts? Has anyone gotten an explaination like this when going through your Dx process. Maybe I don't have MS...and I am IN LOVE with that idea...but I just don't get the whole "don't worry about how messed up your brain looks" explaination!

((hugs)) to all.

Kim

[supermum_ms]

Hey Kim,

I'll never forget the jist of Quix's comment regarding a similar situation, it went something along the lines of: A neurologist who see's a patient with sx's, his/her neurological tests find 'clinical signs' suggestive of MS, sends the patient off for an MRI and does in fact find brain lesions but then calls those lesions something that doesn't cause sx's, is an imbocile.

You have more than enough reason to be spitting chips in frustration, seriously who wouldn't be a tad frustrated. I really know it su_cks to be in this situation but at the end of the day you have the power of choice, i can only see 3 options. (1) you can choose to accept this rather wonkie explanation (2) you can choose to seek another opinion, or (3) you can take a break from the entire dx process for awhile.

Personally i've chosen option 3 but i wouldn't necessarily recommend anyone choose to do what i have, so i'll just recommend you get another opinion, but please make sure they do specialise in MS so they know that dawsons fingers are not the only type of lesions found in MS grrrrrrrr

Hugs............JJ

[Ricobord]

How many lesions do you have?  I have about 20.  They are small and unenhanced, but they are all over the white matter.  I was told they weren't consistent with MS, too, but I was sent to an MS expert anyway.  She said the same thing your doc did...that migraines, celiac, smokimg, stress, "life", can all cause brain lesions.  I seem to remember she mentioned the birth control theory, too. (Wonder what that would do for family planning...to find out the pill kills a few brain cells!?  My mother took high dose birth control pills in the 60's and 70's and she doesn't have a single lesion.)

In my case, they turned out to be caused by neurologic Lyme disease which was mimicing MS.  I tested false negative twice, which delayed my diagnosis. I am convinced there are a number of neurological problems that doctors just can't explain.  They still have much to learn. With today's technology, it is hard to believe there is so much they don't know.  And it is the patients who muddle along.

[LisaJF]

Your doctor is right that there are lesions in people's brains all the time and they do not have MS.  What can cause them? Contact sports and trauma to the head, smoking, migraine headaches, high blood pressure, etc., etc.  The question is, do these people have neurological symptoms?

Sure a B12 below 300 can give a person neurological symptoms and when the B12 is replaced, in time, the symptoms will dissipate.  But after that, what if you continue to have symptoms after B12 is within normal limits?  

But that doesn't answer your questions you have intelligently posed to your doctor. It was really quite dismissive of him to say the least, specialist or not. Big teaching hospital or not.

I've been told from "probable MS" (one Neuro) to "possible MS" (two Neuros) to "there's some psychiatric overlap" (MS Specialist).  I've never had psychiatric issues in my life. I suppose I could at some point, but I was sure that it was not and still know that it is not.  

My point, they all have failed to tell me why for over two years that I have extreme fatigue that I battle with, ataxia, fine motor incoordination, paresthesias, allodynia (one time deal but lasted a month), headache (last month I've had it for an entire month and Im not a headache person at all), droopy one side of face (happened x 2), etc., save for the "psychiatric overlap". LOL.

He didn't explain, he dismissed your question because he doesn't have an answer, now I can understand if you have a history of migraines, high blood pressure, had head trauma, smoked for 30 years +, on vasoactive drugs....but he failed to explain to you the reasons for your symptoms. (I assume you have symptoms?)  Now if you have lesions without symptoms that's a different story, but I would have to go and look at your older posts to get to know you a bit better.

Screw him and find another that is worthy of your time and $$$ and your health care.

Lisa

[Red_Star]

In Japan and Europe the lower limit for vitamin B12 is between 500 - 550 pg/mL. That is not optimal range but a bare minimum. Optimal health is the upper end of the reference range.  A book on vitamin B12 deficiency: "Could It Be B12? An Epidemic of Misdiagnoses, Second Edition" by Sally M. Pacholok, R.N., B.S.N., and Jeffrey J. Stuart, D.O.

Excerpt from Dr John Dommisse's article "Vitamin B12 deficiency - symptoms, signs and optimal treatment"...

"At least six neurological and psychiatric papers, in top medical journals, have shown that the normal range should be regarded as at least 500-1,300 pg/ml (rather than 200-1,100), since the cerebrospinal fluid level can be deficient when the serum level drops below 500, and neuropsychiatric symptoms often occur at serum levels between 200 and 500 pg/ml (VanTiggelen et al, Lindenbaum et al, Mitsuyama/Kogoh, Nijst et al, Ikeda et al, Regland)."