I really need some advice, as I can't continue suffering the way I have been (sorry if I double post, but something seemed to go wrong with my first post). My symptoms started back in high school with muscle stiffness, headaches and blurry vision. The neurologist I was seeing said that I had TMJ pushing on nerves and my stiffness was unrelated and probably arthritis. The stiffness was dx'd as Ankylosing Spondylitis, but after several years with very little ankylosing, that was taken away.
In college I developed trouble walking about 50% of the time and was using a cane during the periods I couldn't walk well. I developed blurred and double vision during college as well. When I stopped breathing during hip surgery for hip impingement, I was diagnosed with Myasthenia Gravis. The orthopedic said he wouldn't do the other hip unless I saw significant benefit from the first surgery due to the complications. Unfortunately, I didn't really see any benefit, and ended up using a walker most of the time, with brief periods of being able to walk almost normal. I didn't respond well to the MG medications and they eventually did a thymectomy to see if that would improve the symptoms. The surgeon said my thymus gland looked abnormal, but not tumorous or anything that would have shown up on the CT scan.
As the muscle stiffness was becoming more severe, my current neuro dx'd me with Stiff Persons, but was never sure about it. One of her colleagues is positive that I do not have it. She sent me to Mayo for a third opinion and they said it was inconclusive. I have stiffness, but not what they expect in SPS and my antibody count is in the diabetes range, not the SPS range. They left the SPS dx, though, since they didn't have a baseline from before immunosuppressants and they said the benzos could be altering the way the stiffness presents. At the time my gait was extremely stiff, but they did PT which resolved it once the benzos helped with the stiffness.
In the last year, I've developed a range of new symptoms. My fatigue has turned into extreme sleepiness, my eyelids no longer open without extreme effort, I have periods where I'm unable to void my bladder (which I had before, but are more frequent), so I need to cath frequently, and developed mixed sleep apnea. Also in the last week i woke up and was unable to walk again. This time I'm not as stiff, however, and my gait appears more ataxic. The eyelid symptoms are helped by the amphetamine that my pulmonary doctor is prescribing for the sleepiness, but it was really luck that led me to that solution. I don't know if the walking problem is the same symptom or something new, as it resolved for nearly a year after I was put on benzos and did PT. Its worse than the previous episode, as I could use a walker fairly easily before, now I have trouble coordinating my movements even with the walker. My GP didn't know what to make of it and I haven't been able to talk to my neurologist, who must be out of town. At my last visit she didn't know what was causing the new symptoms, other than to say its not Myasthenia. Personally, I don't think I have SPS, but something else that has stiffness as a symptom. I'm working from home since I can't walk well enough to get into work, but can't keep this up forever, and whenever I think this can't get worse, it does.
Does this sound like MS and if so, is there a doctor in the DC/Baltimore or Charlottesville/Richmond area I should see? Any help is appreciated.