Krackersones
Well-known member
I recently started corresponding with a women on another website. I think it is . There was a thread there on neuromyotonia and Issaac's Syndrome that she posted on. She is actually a former visiter/member of this site. With her permission, I am sharing part of her recent email to me as I think many of you will find it as helpful and reassuring as I did. I love to be able to pass along things like this, especially for those of us with tongue symptoms. Krackersones______________I just had a workup in neurology at UNC. I have seen many neurologists over the years since this started (March 1995). I have had remissions during two pregnancies and while nursing. My EMG was extensive as were the ncstudies at UNC. They came back negative. They explained that there are many of us with these symptoms and we do not have MS, ALS, etc.. They can't "box" it, so they treat it as well as possible. They want me to start with Requip even thought I don't have Restless Legs syndrome. Anti seizure drugs are also options. I gave them a research study we did among ourselves and they took it and are going to review it which is encouraging. The second doc I saw admitted that not a lot is known about neuromyotonia/Issacs. I am not 100% positive that I have this, but the symptoms are similar. They also told me that tongue fasciculations are common! That was relieving as that symptom really gives me anxiety. Do you get pins and needles on your tongue with the twitching? Sometimes it also feels like it is in a spasm. It is located on the left side more than the right as well. It is so hard to deal with b/c no one understands it.I am now being studied for my long standing anemic situation. I was given IV infusions of iron. They now feel that the anemia is coming from a chronic illness. I will have a colonoscopy/endoscopy to check for Celiac (look at that one, causes all sorts of problems!), and other things. A bone marrow biopsy may also be done. New territory for me since I am so used to being brushed off with the other symptoms.I was on BFS for a while too. I don't think we talked before.I highly recommend UNC. Baylor (Texas) and the Mayo in Rochester are also very good with Isaacs and neurology.
May