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 08-15-2008, 07:33 PM #7
Topsie Topsie is offline
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Join Date: Aug 2008
Posts: 13
15 yr Member
Topsie Topsie is offline
Junior Member
 
Join Date: Aug 2008
Posts: 13
15 yr Member
Default I can relate

Hi Wow was I glad to read what you wrote! I erased all that did not pertain to me, but left all that did so you can see there is someone out there who is going through a little bit different version of what you are. Below is what you wrote and then my response.

You wrote:
I started to get spasms and tremors in my affected leg in mid-March which spread over about 2 months to my whole body. The movement problems have continued to get worse - affecting more and more of my body, becoming more intense and more frequent. I have constant muscle spasms everywhere, sudden jerking, tremors, spastic posturing, weakness, dystonia,

movements but my body is constantly moving in an involuntary way. ) makes them jerk and spasm uncontrollably. It is also worse if I am upset, worried or nervous. It continues to get worse virtually by the week.

I am going through various neurological tests to see if there can be another neurological explanation
can't cause such widespread movement disorders beyond the affected limb. My reading of the medical literature would suggest otherwise - I can accept that it might be very rare but it does seem possible.

extreme kind of movement problems I have. I feel as if I am going crazy . Please, please if anyone else has similar symptoms
presenting like this share your experience with me.

Gymjunkie[/QUOTE]

my response: I can relate to all of the above! I am curious to how old you are. I ask because I am 36 and have been dealing with spasms since I was 31. I have palatal myoclonus and at at 35 got spinal myoclonus. The spinal myoclonus has resulted in the involuntary version of what you describe your legs to do, however my condition is bellybutton up. So I get horrible spasms in my arms, shoulders, neck, back, stomach. It results in constant and very visible external spasms of my arms etc. It has been devistating to me. Only 1 in 3 million has this spinal myoclonus, but check it out maybe you have this not CRPS (sorry don't know what that is) and yours is showing up in the legs while mine in the arms etc. It took them 4 years to dianogis this. The first doctor laughed at me when I said I was having neck spasms and my palatal myoclonus was spreading. I have found no medication helpful at all. The whole thing has been so challenging. I am in cronic spasms and cronic pain. My only glimmer of hope that maybe can be yours too is that I have started Biofeedback. I also go to PT two times a week. The PT does cranial sayprial (wrong spelling- spelling as it sounds) work to slow my central nervous system. I suggest you look into these too things. Find out if your spasms are the result of over firing of your brain neurons and if they are then I am almost 100% you will get some help from this- only because I did and NOTHING else was working. Of course I do not have nor do I know what CRPS is sorry so I am not even sure if it relates to the over firing of brain neurons. Anyhow, good luck. Sincerely, Topsie
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