I had my rheumatologist appointment today, that went well, butttttt the rheumy wants me to have a lip biopsy to check for sjogrens disease (another autoimmune disease) I have thought I have had this for quite a few years. It made sense to me the dryness of the eyes throat, skin, but when he heard my small fiber neuropathy dx was positive he said it makes sense that I also have sjogrens. He said it does cause pain spread through out the body also. So I have to go off the Imuran for one month before the biopsy so that the biopsy does not come up with a false negative because of the meds.
Also same thing goes with IVIG. He said he would dx without the biopsy some people choice not to have it done because they will be treated the same with their other autoimmune diseases, but I said I want to know. It is good to have it documented if I do have it as it can be something that runs in families. So now the appointment Thurs with the new neurologist. I hope it goes well and I feel as comfortable with her as I did Dr. Santillan. I also hope now that things are pretty set that I do get approved by the insurance for the treatment plan as it is very, very expensive. I am sure it will take a month or so to work with the insurance with this to get it approved so it should work out ok, lip biopsy then the IVIg treatments start. cross fingers
I am also going to ask for a test for MG as I have had such termers that it is scary. Last night they started mid afternoon, lasted until today and it is ten at night and still have them a little in my arms. But last night they were inside my body and out, trying to eat, my right hand was trembling so bad, my fork was moving up and down and I could not stop it. This has been on my mind for a while as another who has HE has this also, and has been after me to be tested for this. As my symptoms were just like hers. So we will see what the neuro has to say tomorrow.
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