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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS) |
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08-30-2016, 09:12 PM | #1 | |||
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So I acquired RSD from a fall down the steps almost 30 years ago. 8 years before I had half my Thyroid removed due to nodules. After 10 years of treatment, I found remission from RSD through Tegretol. I had occasional small relapses. Fast forward 10 more years and I began to have severe muscle weakness, sometimes almost paralyzed limbs and weird sensations. I was diagnosed with Myasthenia gravis, a rare neuromuscular autoimmune disease as well as hypothyroidism. I still had other unexplained symptoms. They kept testing. They did a tissue biopsy and found small fiber neuropathy. They did a muscle biopsy, showing mild angular atrophic fibers. They did a couple of brain MRI showing increase intensity of foci. Does anyone else with RSD have a history like this? Am I crazy to think this is all related to the RSD? I feel like my whole nervous system is being attacked. Oh by the way the RSD pain is coming back.
Any insight would be appreciated kathie |
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"Thanks for this!" says: | BioBased (08-31-2016) |
08-30-2016, 09:53 PM | #2 | |||
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It is pretty common for those with RSD to also have other autoimmune diseases.
I've had RSD for 7 years now and I was just diagnosed with small fiber neuropathy...though I haven't had my first appointment yet with the neurologist since the pain management doctor diagnosed it with a skin punch biopsy. Hopefully someone else can chime in with more experience with this. |
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08-30-2016, 11:00 PM | #3 | |||
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Thanks, so Is RSD considered to be autoimmune too? I get IVIG and it helps all my symptoms
kathie |
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08-31-2016, 09:14 AM | #4 | |||
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I have CRPS, and was in latest years diagnosed with Menière's. I don't believe it's related at all.
I mean, it's not as if it all *has* to be. Until there's proof to the contrary, I'm just assuming it's two different disease processes (well, they *are*).
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All the best, Marleen ===================== Work related (car) accident September 21, 1995, consequences: - chondromalacia patellae both knees - RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008 |
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08-31-2016, 09:53 AM | #5 | |||
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Hi Kathie,
I am sorry you are having to deal with so much and hope your MG is under control. I am glad the IVIG is bringing you relief on so many levels. There has been research in the last few years by Dr. Louise Oaklander showing a correlation between small fiber neuropathy and CRPS. There has also been research by Dr. Andreas Goebel showing an autoimmune component in a percentage of CRPS patients. IVIG has been given as a treatment for CPRS and there was a recent trial for it. I am not surprised that IVIG helps. Here are a couple of links to peruse. There are numerous articles on both subjects available. The SFN article is a heavy but very interesting read about nerve injury in CRPS 1. Though I feel fairly well read, I encountered some technical information in this article that gave me a few aha! moments. The autoimmune link is just a nice, easy summary. Autoimmunity Linked To Complex Regional Pain Syndrome - Chronic Pain http://rsds.org/wp-content/uploads/2...eurol_2009.pdf Sending thoughts of hope and healing,
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Littlepaw Shine Your Bright Light Last edited by Littlepaw; 08-31-2016 at 02:28 PM. |
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"Thanks for this!" says: | BioBased (08-31-2016), PurpleFoot721 (08-31-2016) |
08-31-2016, 04:32 PM | #6 | ||
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My 2cents, I think it is all auto-immune related, which is why LDN seems to help so many varied ailments-they are all auto-immune related.
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"Thanks for this!" says: | PurpleFoot721 (08-31-2016) |
09-02-2016, 11:36 PM | #7 | |||
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Quote:
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"Thanks for this!" says: | BioBased (09-06-2016), PurpleFoot721 (09-03-2016) |
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