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Old 01-29-2013, 04:40 PM   #5
Join Date: Jan 2013
Location: Marion, Ohio USA
Posts: 1
Jrun19 HB User
Re: Years with no diagnosis, several tests, sever pain HELP!!!(long post)

I deal with the same symptoms and have not received a definite diagnosis either. I was first told that I had fibromyalgia and they gave me GABA supplements to take and it helped some. Over the next few years I continued to get worse and got into a specialist at OSU and went through ever test possible but everything came up pretty normal. They originally thought maybe I had some sort of autoimmune disease and thought it was stiff person syndrome. This almost always shows up in blood testing but they thought I might be the exception to the rule. They recommended IVIG treatments, which can be very helpful for all kinds of muscle disorders/disease/syndrome. I had a very bad reaction of migraines after three treatments and they had to stop. They felt that I must have something else since I had such a bad reaction so they diagnosed me with Muscle Overuse Syndrome and sent me on my way. They said that it usually gets better over time and to call if I feel worse. Well, that didn't help me much so I continued on my journey.... I should let you know that i have dealt with this for 10 years now and I gradually got worse over the years. I have tried all kinds of things, acupuncture, therapy, massage and medications with little effect I found a pain management doctor and he actually gives me Myobloc (form of Botox) shots. I get 20,000 units, he gives me shots in my upper back, shoulders, back of my neck, both sides of my entire neck and my upper chest area around to my under arms. This has probably helped me more than anything else that I have tried. I get these shots every 12 weeks and go once a month and get some nerve block shots if I have anything, like lower back, that is bothering me. I haven't given up on a diagnosis so I did get into a neurologist that is on the list of best doctors in the U.S. he looked over all my info and all my test results and did an evaluation and we went through everything I'm dealing with. He said its some type of muscle disease and the name really doesn't matter because its not anything that can be cured. He agreed that I have tried just about every option out there and the treatments that I'm doing are probably going to be the most effective. He did say there was one other thing that I could try to see if it helps me feel any better and it's Plasma Exchange. I'm not really sure of the technical name of the treatment. He said its an aggressive treatment but one that I haven't tried yet. They pump blood out of you, separates plasma, cleanses it and pumps blood back into your other arm. He said if it helps great and I can continue treatments. However, he said there really isn't anything else out there for me to try if it doesn't help me. I am going to try it in a couple of weeks and see if it helps me out at all. If not I guess I just keep doing what I'm doing and cope the best I can. I hope this gives you some insight of some kind or maybe a few ideas of things that he can try.
Good luck!