I decided against any ER visits. My experience has been when you want a few hours of relief you end of admitted for several days. When you want to be taken seriously, they give you an oxycodone and shoe you out...

I did go swimming today, which loosened up my joints again. I added some stretching in the sauna...I'm hoping I can get more than a day out of it this time.

I'm not sure what to think now. I reread everything that Mayo sent me after my visit there last year. The doctor was very non-committal in her letter, and blamed some symptoms on drugs that I'd started after first having those symptoms. Like the double vision, which she said is caused by Valium. I had double vision years before starting Valium, though.

They're neuro-opthemologists clearly thought I had MG based on an eyelid twitch that has a very low false positive rating. The treating doctor kind of dismissed their opinion when I spoke with her recently. Blood work was negative for MG, and borderline positive for SPS, but this was after numerous infusions, high steroid doses and surgery to suppress my immune system. The original MG blood work was positive, my conclusion would be that immunosuppression worked, but I guess that would mean any negative antibody tests would have been suspect anyway.

The MRI's were clean, but I was heavily immunosuppressed--if MS is a possibility, would this have affected the MRI? I've been slowly coming off the steroids for about a year, and the infusions have probably started to lose their effect.

They didn't observe the stiffness that other doctors and therapists have commented on, but I was on 100 mg of Valium at the time. They told me this could affect their observations and their EMG, but that didn't make it into the report.

The only thing that was conclusive, other than the eye doctors report, is the physical medicine report that I have a gait disorder that responded well to a few sessions of therapy.

This just leaves me more confused. They want me to come back for intensive gait training. I don't think I need it since I've been walking fine for a year, and I can walk fine after I've done laps and stretched in the hot water.

It seems to me like it was so easy to fix because with 100 mg of Valium and no immune system, the walking had become a bad habit at that point after so many years, but the disease processes were controlled. Now that I'm taking less medication, something's causing symptoms, again.

As I said earlier, I'm not the poster child for mental health...I've ignored bouts of depression since being chronically ill can have that affect on you. And my personality would probably best be described as borderline.

But I have a lot of trouble believing my medical symptoms are conversion disorder. Especially given that the muscle issues were first observed at three years of age, I have a first cousin with an extremely similar condition (whose refusing treatment so we can't really compare notes), and there's a history of unexplained neurological illness in the family that goes back several generations. As far as I know conversion symptoms aren't inherited.

Since I can obviously walk after moving in the water and stretching, my inclination would be to stay local, make sure to exercise daily, and find a neurologist whose willing to look for an underlying cause.

I should probably also find a pdoc for the issues I've been ignoring. Not because I think the conversion diagnosis has merit, just because its probably healthy to do in general.