Confused on diagnosis

Question

May of 2012 I had an MRI of the brain because of numbness and tingling in my arms and legs, memory and cognitive problems, and fatigue. The MRI showed "Fairly extensive areas of increased FLAIR signal in bilateral centrum semiovale, subcortical, and periventricular white matter. A few of these are oriented perpendicular to the lateral ventricles. There is also, abnormal FLAIR signal noted at the callososeptal interface both at the level of the rostrum and splenium as well as increased punctate abnormal FLAIR signal noted in the body of both right and left corpus callosum. Given these findings, the possibility of a demyelinating process, such as multiple sclerosis, is high in the differential." So, then I had an MRI of both the neck and spine which were normal. I also had a lumbar puncture which showed 3 oligoclonal bands in CSF and no bands present in serum. Still, I do not have a diagnosis of MS. I do not get it. Comment on neurologist report says "Given the patient's symptomatology, as well as the abnormal findings on the MRI, I do raise the possibility of multiple sclerosis even though her spinal fluid is normal, except for 3 oligoclonal bands." So, the question is, do I have MS or do I not?? So confused. How is the CSF fluid normal is it contains 3 oligoclonal bands and none is the serum??

Lulu54 · Answer

Gina,
I can only agree strongly with what everyone else has stated - get another opinion.  The comment about 'only 3 o-bands' reflects the thinking of the Mayo Clinic standard of MS is 4 or more.  That is pure BS - and they have managed to unduly influence medical providers in a lot of places that there has to be 4 or more to be positive.   Nevermind that it is possible to have MS and have ZERO o-bands.

Go get that second opinion - take all your test records with you.  I hope you have copies of everything - if not, be sure to go ask for them.

good luck, Laura

Jifr · Answer

Ditto immisceo. Stat. 

Gosh. Nowadays they start treating people with just a CIS. With your diagnostic results it seems like you should be treating as well. 

I hope you get an answer soon.

HVAC · Answer

All my tests were positive for MS from the get go. I had several Neurologist say I would be diagnosed with MS in the future. I was confused you either have MS or you don't. It took my MS Specialist two years to finally commit and diagnose me with MS. Luckily my disease did not progress.

The way the Neurologist's Brain Works is it is not MS until they are sure it is MS. You can meet the McDonald Criteria but if they are not sure it is not MS. Some day they will have a blood test for MS but until then we have to deal with this screwy form of Diagnosing.

The real kicker is all with each Neurologist I had to start over. They would not take the other guy's word on it about MS.

Alex

SarahL2491 · Answer

I don't know where you live in TN, but many of the MS in AR go to Memphis, I don't know the name of the specialist, I go to AL……..

If you have lesions in the brain and bands in the spinal fluid, its time for a new neurologist, there are some stupid ones out there………get another opinion

Gina376 · Answer

Oh, I see what you are saying. CSF negative for anything else. supposedly the Neuro that I saw is an MS specialist in WI and he said that usually more than 4 bands  is an indication. I now live in TN. I may have to look for somebody down here. I am not currently on any meds. they did want to start me on some steroids back when I had the LP but I refused them. and if the symptoms progressed then start copaxone. I am trying to manage without meds. I also was diagnosed with RA a few months before the MS testing. Lupus and Lymes tested out negative. I am unsure if the pain and fatigue that I have is related to the MS or RA. I think it is the MS because usually the pain from RA is bilateral and this pain is mostly on my left side. Neck, back, left arm and hand. Toes on left. Tingling of left arm and left leg. Brain lesions are mostly on the right side of the brain and according to another neurologist that I saw, he said that that is why I feel most of the symptoms on the left. I never did experience anything to do with my eyesight. At the time in May of 2012, when I first noticed the symptoms, I do remember that I couldn't remember things and that I was misspelling everything when I normally am an excellent speller and not being able to find the words that I was trying to say when I am extremely picky about using the correct English. I guess I just want to have a confirmed diagnosis.

Gina376 · Answer

I had 3 bands in csf.

kwarendorf · Answer

Vote # 3 for finding a new doc. Life is too short to tolerate docs that are afraid to commit. Is this neuro an MS Specialist? 

You present with clinical findings, positive MRI and o-bands unique to CSF. I would find an MS specialist if I was you :-)

Kyle

rendean · Answer

Dear Gina,

Immisceo is correct, time for a second opinion!!! An LP is only relative in cases of MS where the MRI and diagnosis is iffy and there are looking for additional positive evidence. Having a "negative" spinal tap does NOT exclude MS!

The comment about the spinal fluid normal except for O-bands was probably menat to reflect no other issues such as high white blood cell count indicating infection, or other abnormalities of that type.

The corpus callosum is "prime real estate" for MS. Only one or two other entities present with lesions there. It is what confirmed my barely visible brain MS lesions in the beginning. I also had zero O-bands in the CSF and blood.

Please get a second opinion , from an MS neuro, and take all of your test results with you.

Please keep us updated on your journey. 

We care,
Ren