My question is, does this sound like MS to those of you who have been dealing with MS for a while?
Again, my MRI and spinal tap are clean. I do not think the two Neuro's I have seen are specialists in MS and I am thinking of going for a third opinion.
Sorry you have to deal with this, and I wish you well in finding relief. MS is often difficult to diagnose since it mimics so many other medical conditions/diseases. In fact, there is not a single symptom that is exclusive to MS, so it often becomes a diagnosis of exclusion - if everything else is ruled out, you're left with a dx of MS.
As for the MRIs, did you have them of both the brain AND spinal cord? Some people have lesions of only one or the other, so a clear brain MRI doesn't rule out MS either.
Also, the NMSS site says the following about the odds of having MS with no lesions on MRI:
Although MRI is a very useful diagnostic tool, a normal MRI of the brain does not rule out the possibility of MS. About 5% of people who are confirmed to have MS do not initially have brain lesions on MRI. However, the longer a person goes without brain or spinal cord lesions on MRI, the more important it becomes to look for other possible diagnoses.
(Edited to add a link to the quote: http://www.nationalmssociety.org/about- ... index.aspx
Five percent is not a very high percentage, so if you have no lesions on brain/spine AND a clear spinal tap, your docs should probably look for something else. MS diagnosis or not, you can be treated for symptoms. The meds for MS won't make anything "feel better" anyway. Look around all the subforums here and you may get more ideas about ways to improve your general health. That has been my focus for many years, and it seems to have worked pretty well.
Good luck in finding answers.