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Originally Posted by AnnieB3
Are you on any other meds, such as steroids?
Well, the Anti-Jo is an important piece to all of this. Antibody levels come and go. Whether you have polymyositis, dermatomyositis, lupus or a crossover with scleroderma (which can make lungs feel tight), you should try to see a rheumatologist to make sure what it is that you do have.
Mestinon won't help if you have one of the "itis" diseases. Why tax your body with a drug you don't need? Unless you do have MG. There are those of us with more than one AI disease!
A lot of people have disk degeneration and have absolutely no symptoms such as the ones you're having!
How do you know that antibodies (some unknown ones?) are attacking your autonomic system? Have you had autonomic testing?
Not enough diagnosing has been done for you. OR thinking! If you can, try to arrange for a bunch of testing to be done over a period of a couple of days (since you're out of town). Appointments with an endo, rheumy, and neuro seem to be in order.
I hope your docs can figure all of this out for you and get you the appropriate care! Don't let them "guess" at it! That's dangerous.
Annie
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I went to Washington Univ. when I received my pos. results for jo-1. My uncle had polymyositis and it did not go well for him. I knew I needed help from someone who specialized in "itis" issues. I am a patient of Dr. Pestronk's. I could not get in to him for a year. By the time I saw him, I was feeling much better. But I had odd sensations throughout my body. They did skin punch biopsy for sfn and tested for many antibodies. By that time, jo-1 was no longer positive. He said it was too high the first time to have been a false positive, but was certain I no longer had pm. My skin punch came back positive. So, they see me once a year to check for new antibodies and to check the progression of sfn.
I have had chest xrays which were fine.
When I talked with neuro on the phone Monday, he felt that my low blood pressure and exhaustion is due to progression of sfn. It can attack autonomic systems as well as sensory.
I agree with you that I don't think I need to take mestinon without being sure of why I'm taking it. The neuro that called said that it is now being prescribed for people who are having issues with heart rate and blood pressure because of SFN.