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Immunoligist Update - New Treatment


MNsue
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I have finally found a doctor that seems to understand the big picture with my illness. It has come after 15 years of looking for someone to diagnose the crazy autoimmune issues I have had.

Today and tomorrow, I will have 1,000 MG dose of steroids. I will repeat this in another month, and will have one more in two months. The goal is to explode the T-cells that are doing damage to my autonomic nervous system, and then re-grow healthy T-cells. I will also start an immune therapy drug that will take about 6 weeks to kick in. This steroid treatment has the least amount of side effects long term. It clears the body in 24 hours, and has not shown bone loss.

I have a strange combination of blood work that does not point to a specific autoimmune disease, but because I have improved with steroid use in the past, he felt this was an appropriate therapy. He treats a number of dysautonomic patients and has had a lot of success with this and IGG therapy.

This has been a wonderful gift, because last week, Mayo Clinic declined to see me (after waiting 4 weeks for them to review the file my MD sent over). You would think they might feel a little bad for missing the dysautonomia in my last two visits, and grant me a visit with Dr. Low, but I guess that is not going to happen.

I am hopeful that this will keep my illness from getting so bad. I am feeling a bit high from the steroids today, but it will be worth it if I can get better.

I hope this info can help others. I will keep you posted.

Rhonda

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I wish you best of luck with your treatments. Has anyone had a negative experience from corticosteroid use?

Last year I was prescribed Medrol after inner ear trauma and I really believe that is what did a number on my body. I haven't been the same since. I had multiple reactions and all the orthostatic problems increased as well as balance ,walking and muscle problems to mention a few.

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I wish you best of luck with your treatments. Has anyone had a negative experience from corticosteroid use?

Last year I was prescribed Medrol after inner ear trauma and I really believe that is what did a number on my body. I haven't been the same since. I had multiple reactions and all the orthostatic problems increased as well as balance ,walking and muscle problems to mention a few.

I have heard that some people to react to steroid with muscle weakness. It is one of the more serious ones to watch out for. I think the steroid use make sense for me because I have responded well in the past to steroids, and I have a long personal and family history of autoimmune disease. I don't think it is for everyone.

The immunologist did say that he has had very good results with IGG therapy as well when the steroids don't work.

Rhonda

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