frustrated - Multiple Sclerosis Message Board

dje27 · 06-06-2006, 08:21 AM

Hi everyone, I am getting so frustrated. I have been to two neurologists who say they dont think it is MS. My symptoms are:
fatigue
muscle fasciculations
right leg numbness with right foot tingle
right leg feels heavy at times
severe pain leg at times
Had MRI which showed white matter lesions. Had another MRI 6 months later, showed a few more.

My question is, should I just let it go since I have been to two neuros.? My PCP said I am too young to be having white matter lesions. The radiologists who reviewed the MRI said in the report, cannot rule out MS.

Neros said lesions are in the wrong place for MS??????? Can anyone explain this to me. Thank you sooooooo much.

want2run26 · 06-06-2006, 10:55 AM

I don't know what to say other than I am in the same boat as you are.

I have symptoms that could be MS or not I guess. I have white matter lesions, clean C spin MRI and they are just not sure what to tell me.

I could care less about the lesions, if I felt fine then so what?! The problem is when symptoms come out of nowhere it seems like there should be something that is causing it so if not MS then WHAT??

lestoby · 06-06-2006, 12:43 PM

Welcome to my world of "Limboland".

I have almost the same identical symptoms as you, except I have intermittent R eye blurriness too. I only have 1 attack and 2 lesions.

I went to 2 neuros myself and the last one said something about the lesions are not perpendicular to the ventricle (Huh?)

Most days, I feel OK and on a pain scale of 1-10, my symptoms are in the 3-5 range. So, I am no longer "desperate" to get a dx.

Many people on this board were able to get a lumbar puncture (only after insisting on one to the doctor) and this is how they were able to come up with a 2nd clinical diagnostic conclusion that they had MS. You may want to go back to one of the neuro's and insist that they do a lumbar puncture.

However, I am surprised that your 2nd MRI was not considered another clinical tool to meet the McDonald Criteria of "dissemination in time" if more lesions appeared.

Best wishes to you

NataliesMom · 06-06-2006, 05:00 PM

I don't know, it certainly looks as if you have alot of the sx of MS. Personally I'd try a third Neuro. Is there one in your area who specialized in MS, or perhaps an MS clinic? Check the NMSS website to see if there is. I have lesions in my white matter and I do have MS. Do you have cognitive problems? That's what causes my cognitive problems are those little buggers hanging out in my white matter on the left side. Personally, I really don't care for my Neuro but he is very well respected in our area and hold lectures and is always up to date on research and travels any where there is something new going on in the world of MS. He keeps way up on top of it. That's the kind of doctor you want to find. We call him the 5 minute man but he knows his stuff and I trust him.

Please don't give up. I think that's what some of the doctor's want. They don't want to deal with you because they don't see the "classic" MS stuff. That's the problem MS is a freaky disease and does some freaky stuff what you need is a freaky doctor who will listen to you. You may have to wait months to see him, but they are well worth the wait.

Good luck to you.

dje27 · 06-06-2006, 07:35 PM

thank you all for getting back to me. I am just like you, I just want to feel better again. This has been going for over a year. Maybe I am looking too hard for a diagnosis. But when you know something is wrong and to hear from docs that it is nothing, it is very frustrating. I just want to feel healthy again.