Hi I wanted to share this incase it helps someone else and saves you some time. I am in years 6 of my rsd, full body have had every treatment in the world literally including coma in Germany. Last year I began having seizures. Terrible ones. they mimic petite grand mal. The brain shudders are terrible and painful. The seizures continue, I am conscious through them , they most happen at night and in am just as I am waking. I have had one during day. 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. If I could find the email i would quote him exactly. They have become so frequent and severe that over the past 6 months i have managed to get all the way from Cat scan of the brain- results nothing- to mri of the brain- nothing to the ulitmate test MRA of the brain with contrast- results perfectly normal. So Dr. Schwartzman was right. I was sure he was wrong and i had developed epildepsy from the coma- alot went wrong. I thought this might be helpful to anyone else suffering these seizures and brain shudders. It is alwasy the rsd. very depressing in a way as nothing can be done. Please post if you have these too and what meds you are taking and if it is working thank you cz

I'm so sorry you have to go through this!

It certainly is great knowing *of* this, but if I were to get seizures I'd do what you did, have everything under the sun and epilepsy excluded by my doctors. I wouldn't automatically presume that it was the RSD and leave it at that. I think that that's the ultimate message, rather than... if you have this then it *is* RSD.

Thanks for sharing!

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,,