If not MS then what is it?

[Psj201]

I have numerous MS symptoms. My neurologist was pretty sure about it. I have four brain lesions, numbness in right leg with constant burning sensation as well as skin sensitivity that has gone from my right trunk down to the bottom of my foot. I've had numerous MRIs and recently completed the spinal tap. The spinal fluid came out clear and my neuro dr said he can't dx MS at this time.

Last summer I had my first bought with numbness in my left hand and leg as well as partial optic blindness where things (like half of someone's face) would disappear in front of me. When I had this second occurrence in February my neuro got serious about MS. He thought the spinal tap would confirm. So it's negative. Now what. I continue to have nerve pain throughout my right side.

I'm a 57 year old grandma in very good shape, until now  

Any info or ideas appreciated.

[doublevision1]

I would be getting a second opinion from a younger neurologist at a specialized MS facility.

[HVAC]

They do a special LP for MS it is sent off to a lab usually the Mayo. It takes a few weeks to get back and they look for o bands.

Alex

[supermum_ms]

Hi and welcome,

MS would need to be on your list of potential causes, but there are many alternative explanations for what you've mentioned that there may not be enough suggestive-consistent diagnostic evidence for you to have met the Mcdonald diagnostic criteria and what condition is causing your abnormal clinical signs, symptoms etc is still not diagnosible without more consistent-suggestive diagnostic evidence...

I still think the significance of the LP may have something to do with how long a neuro has been practicing, 2+ Obands in your LP use to be a requirement in diagnosing MS.....keep in mind that if you don't have enough conclusive evidence to diagnose, having a positive LP along with all your other evidence might of pushed MS to the top of your list, without the additional diagnostic evidence the door is still open!

If you have spot on your lumbar 5-6 that may or may not require surgery, depending on what that spot turns out to be that might actually be one alternative causation for your symptoms and clinical signs, if your peripheral nerve conductor studies were abnormal that would add weight towards there being a condition affecting the peripheral nervous system.

I would highly recommend if you haven't had visual evoked potentials done yet, that you do because those results will add a lot of weight towards MS (or away from MS) as a likely causation and every missing puzzle piece will definitely help work out what it could be...

Hope that helps..........JJ    

[aspen2]

Unfortunately, although it is true that a negative LP does NOT rule out ms, negative results seem to give most neurologists pause.  I was dxed, then given the LP (which of course was fine), then had to go through another year of testing before I was finally diagnosed for good (by the same neurologist).

It is a frustrating process, BUT it's important because you don't want a misdiagnosis and the chances of a negative LP are fairly low.  Your neurologist is doing what neuros do, in my experience.

Sadly, it means a lot of waiting.  I would stick with the neurologist you like -- they are not all so wonderful.  When he finishes checking all the bunny trails, ms may or may not be still on the table somewhere down the line.

[Psj201]

Yes, he did all that last August when I first met with him. Including some electrical stimuli and needle punctures down my legs. He's been in practice 40 yrs. i really like him, the fact that he deals with me over the phone since I'm almost three hours from a big city. He said he will continue researching less statistical reasons. My spinal MRI showed a spot on my lumbar 5-6. I'm scheduled to go see a neurosurgeon next week. My doc is hoping that will shed more light. However, I feel this is my second "relapse" and from all I've been reading and researching, I have other symptoms as well.

[immisceo]

Is your neurologist an MS specialist? A negative lumbar puncture on its own doesn't rule MS in or out. It simply hespa clarify the overall diagnostic picture. Personally, I would directly ask the neurologist what his hesitancy is. Have you had a full neurological exam? (this happens in the exam room with various tests involving balance, reflexes, coordination, etc.)