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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Old 05-04-2013, 05:53 PM #1
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Frown Another strange question

I always considered myself lucky that my rsd was caught by MRI. However, no other tests were ever done. I received two spinal cord stimulators. I have had numerous new neuro symptoms pop up recently (seizures, balance issues, weakness, etc) seemingly rsd symptoms. Now my neuro is freaking saying they (pm) weren't thorough enough in determining whether or not I really have rsd or possibly another disease. ( she thinks ms) meanwhile, I've had three surgeries, blood clots, and am now in a wheelchair and my extremities barely function and my body in in constant pain,. Have any of you experienced anything similar? While most people don't get treated fast enough, was I treated too quickly? I have every symptom of rsd in my right leg, but my arms were completely different. I even said it was a different feel. So what the heck? Any input would be appreciated.

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Old 05-04-2013, 07:57 PM #2
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There is a very strong possibility that the surgeries have caused it to spread. Yes it is definetly possible for the RSD to be different in Different pats of the body, remember you only need 3 of the 4 main syptoms to have RSD and these can change over time When mine spread from the hand upto the elbow it was different, no swelling but vastly increased hair growth and ytpersensitivity When it started in the legs the pain feels different and lots of skin peeling off
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Old 05-04-2013, 08:47 PM #3
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Quote:
Originally Posted by tkayewade View Post
I always considered myself lucky that my rsd was caught by MRI. However, no other tests were ever done. I received two spinal cord stimulators. I have had numerous new neuro symptoms pop up recently (seizures, balance issues, weakness, etc) seemingly rsd symptoms. Now my neuro is freaking saying they (pm) weren't thorough enough in determining whether or not I really have rsd or possibly another disease. ( she thinks ms) meanwhile, I've had three surgeries, blood clots, and am now in a wheelchair and my extremities barely function and my body in in constant pain,. Have any of you experienced anything similar? While most people don't get treated fast enough, was I treated too quickly? I have every symptom of rsd in my right leg, but my arms were completely different. I even said it was a different feel. So what the heck? Any input would be appreciated.

TK
From what I have found in all of the different sites I have been to, earlier treatment is almost ALWAYS beneficial. I have been told by my own pain doc that "things could be better if you would have been diagnosed earlier". Trust me I saw many docs. Some that just patted my knee and said "we cannot find why you have pain" (the true "you are a drug seeker" but I don't want to tell you that) others who told me "you are just going to have to learn to live with pain" (the kind caring docs HA)
z
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Old 05-05-2013, 11:55 AM #4
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When I had spread to my upper body and started getting the balance issues and other symptoms they did exhaustive testing to everything including MS. Zip, zilch, nada. But I think they absolutely SHOULD do all of that testing to make sure it's not something else because it's possible to have RSD AND something else at the same time and you want to make sure you are getting the proper treatments for whatever you have.
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Old 05-07-2013, 06:06 AM #5
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I get very similar symptoms. I had a CT scan this week to check my lower back for any signs of sciatica after CRPS spread to my lower legs. I had also considered/feared MS. A friend of mine at high school got it and I had similar symptoms. Wobbly legs, poor ballence, tremors, internal feeling of shaking, etc. but nothing showed n the CT scan at all. So it is clearly CRPS spread. I asked if these symptoms were normal on anouther forum and I was told that they were very normal in many people with CRPS. I guess because MS is also in the nervous system some of the symptoms are similar.
I hope this helps in some way.
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Old 05-08-2013, 08:48 AM #6
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TK,

Definitely f/u with all the testing that needs to be done. From what I understand there can be symptoms that mimimic each other in rsd and ms, but there are symptoms that are stritcly ms and strictly rsd. i.e. change in color I believe is only rsd. MRI lesions is ms only.

I wish you all the best.
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