I think your right Marlene, you really should check it out for yourself- I was just in disbelief RSD could cause this too. thanks for your reply, cz

"I wrote dr. Schwartzman he said they are not seizures in the traditional fashion it is the rsd corrupting my central nervous system causing these events." by CZZ74

Wow, this is really something! My baby sister, Val (48), has been dx with MS and I have CRPS I. We share many of the same symptoms...and really, if you think about it, the "burning" pain is the same pain. We also take a lot of the same medication. Val has infusions every other day and the heat and walking wears her out. She still works a full time job, and makes herself keep moving as the doc told her that one day she would not be able to comb her own hair

Val had 5 or 6 grand mal seizures(sounds like the name?) before she had the gasteric by-pass surgery. The weight had to come off or she would have died. Before the surgery, she had a cat scan, MRI's,etc., and it was discovered that she was in early stages of MS. The doctor believes it was caused by the seizures, as there is no family history of MS. Val completed the bypass surgery and lost over 170 lbs, and she went from 30 pills a day to none. All of her medical issues went away with the weight.

1 1/2 yrs passed, and she started having the burning pain, the chronic exhaustion, not being able to use her hands or legs very well because of lack of control. It was then that she was dx with full blown MS. Also, the meds she takes has put 80 lbs back on her small frame.

" rsd corrupting my central nervous system", could this be making lesions on the brain, which leads to MS?


I am not trying to scare you with this information. I am so sorry you are having these seizures. Please call upon me should you ever need a friend.

Dew, wouldnt the mra have shown lesions/ that is what I was expecting to show, it was so hard for me to belivie this is all rsd. But it was perfectly clear. So what do you think? thanks, cz

Do you and your sister respond the same way to WARM and COLD? or is it opposite?

Thanks
MRPETE

Hi CZ,
I'm 14 years into RSD,now generalized or full body. I had been having on a regular basis, the electric jolts, shocks, jerks go thru my body and brain. It would be while sound asleep or going to sleep or relaxing in front of TV. My neurologist put me up to 3200 mg. neurotin to get them under control.
One morning, when I woke up and got up, I started stumbling-ran in the wall, door, and got to bathroom and passed out. I remember hitting the floor. My husband was upstairs-when I woke up I couldn't get up, but army crawled to door and banged on it. He said I'd been out an hour to hour and half. lost bladder and colon. He got a robe on me before the paramedics got there. One couldn't find a pulse, I was going in and out. said he thought I was dead. Tried the other side and blood pressure was 60/40. Spent 4 days in semi ICU. Lots of tests RSD . My neurologist said you usually have more. A friend of mine has had 4. I haven't had any more. And I just went off the neurotin january this year. I hated the way it made me feel and the weight gain. Lost 30 lbs and now working on my last 30. It wasn't a gran mal seizure.
I haven't had any more spells.--well a couple small spasms.
Hope this has helped. Take care, loretta

Loretta, that is the closest description to what is happening to me,. I am so so sorry this has happened to you. We know how terrifying it is. Was it diagnosed? That is exactly how mine come on. exactly how I loose conscoiousness etc. I hope they diagnosed you. thank yoiu so much for posting this, until it, I was begining to think I was losing it. sincerely , cz

Hi CZ,
Thanks for the reply. How many have you had? My Dr. thinks my waking up stubbling was due to drop in blood pressure. The para sympathetic nervous system causes drop in pressure, which in turn, causes losing consciencousness. The sympathetic nervous system causes high blood pressure, which i take 2 blood pressure meds for. RSD is an autonomic disorder, which means it effects the involuntary organs that cause all these problems. Organs like the heart, lungs, circulation, bladder, kidneys, I think that's why I lost control of bladder and colon. I've had my blood pressure drop since that 'event' but not to the point of passing out. My Dr. told me to be careful of lowering my head when washing my hair, bending down shopping on a low shelf. I've had to have my husband come and get me from doing that shopping, felt like I was going to pass out and didn't trust driving my car home.
I've been off the neurotin 7 months now and still don't have the electric shocks. I did a couple, but the first one was after I called a friend to check on her daughters pregnancy and found out the baby died inutero. Had a electric jolt that night.
Again, do you check you blood pressure often? I do, I can tell when it starts to drop and am cautious. I know how scary it was, I don't remember the trip to the hospital and thought I was going to die. This has been at least 4 years ago and my husband still checks on me every morning. Take care and let me know how you are. Your friend, loretta soft hugs

Ive ben fighting this disease for only 8 months,,but beings that mine started as a result of nerve damage[causagia] thats why its spread like wild fire,,,ive had 4 dr;s think and talk me into saying i have MS,,ive had every test done to rule it out and autoimmune diseases too,[MRI,,CAT scan..blood work Bone scans,,} its terrible,,,i feel for you all,,my God in whom i trust heal us all,,,,,thats another reason why they channged the name from rsd,,to crps[complex],,,,,,,,,,,,,,,,,much love and hope,,,Bobber,,

Dubious -

On further review, I'm not sure some of the press releases about the Tesla 9.4's ("resolving individual cells") are worth their hype. In fact, I'm relieved that I didn't site them as gospel.

Turns out the the voxol (the resolvable element of the 2-D slice being imaged) for a 9.4 Telsa is 0.2mm x 0.3mm x 0.2mm or (0.2 cubic mm) ["A Computational Atlas of the Human Hippocampus from Postmortem 9.4T MRI," PA Yushkevich et al at p. 7] http://picsl.upenn.edu/caph08/papers/slides15.pdf while that of the 1.5 Tesla is approximately 3 cubic mm ["The Basics of MRI," JP Hornak, Chapter 1 (INTRODUCTION) - Tomographic Imaging] http://www.cis.rit.edu/htbooks/mri/inside.htm, differing only by a power of 15 of so.

And a power of 15 is of course nothing to sneeze at. In fact, if you open "A Computational Atlas of the Human Hippocampus from Postmortem 9.4T MRI," which came out of Penn's Department of Radiology last year - basically slides for a PowerPoint presentation - you can see comparisons between images taken with the Tesla T1 and two versions of the T2 on page 3, with another from the 9.4 on page 7. And while the 9.4 is clearly a great improvement, cellular it isn't. That said, just as there were significant differences between two versions of the T1, there may be with the 9.4 as well. But all of this is well above my (former) pay-grade.

Mike

Oh my goodness! I am sooo glad this has been posted. I haven't said anything to my neuro or my GP and PM drs. about brain shivers (shudders) I didn't know what they were and now I do!! I have them the most when I am flaring and yesterday was a really bad day. Now, I can express what is happening to me and my kids and husband can't blame it on the meds.

They tell me to "take a pill" when I am grouchy and yesterday the brain shudders drove me so crazy that even the dogs were tip-toeing around the house for fear of setting me off. Today is much better. I haven't been able to afford the meds that I need as I don't have full insurance coverage until next week and I thought it was that, but I have them whether I have my meds or not.

So, once again someone has confirmed that I am not going crazy and I thank you so much!!