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.

Thanks for writing this!
I'm going to see Dr Knobler, (Dr Schwartzmann's ex parter, from Jefferson) this Wednesday. And, I'm having such difficulty, trying to describe what's going on with me!
I need him to write a letter (his wife called me a few weeks ago, about some other business, and she caught me during a crying spell. She immediately took the reigns, and wanted to do whatever could be done, so they're going to write a letter to me, to or for, the court. (divorce issues). Anyway, I was supposed to fax or email her something, and I'm just stuck!
I can't come up with the words, to describe what's going on with me!
(Understand, I have RSd, Tos, Tbi, etc.) so the tbi gets in the way of the pain , and v,v.
I probably have six or so letters started on this computer. As soon,
as I try to 'think", I get confused. "Flooding" is horrendous, if any of you know what that means to a tbi person, it's like a computer with not enough RAM. The little clock will spin, until it crashes the computer....
It drives me NUTSO!
I can't even go into it all here, or, I'll wreck my afternoon.
But, I DO know of what you speak!
Dr S. is Correct! I do believe.
Now, I add a TBI to to RSD, and what gives???
AGH!

Best Wishes for being well!

Pete
asb

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

Pete good luck to you. I hope you are able to finish your letter and that you are given the help you need there. Let us know and take care, cz

I am going to chime as the "view from the other side".

I have epilepsy and RSD, and have had the epilepsy long before the RSD/CRPS.

One of the things you learn very early on in epilepsy/seizures, is that an MRI/CT scan ONLY picks up structural changes in the brain, and most people with epilepsy and seizures have perfectly normal scans. My MRI's and CT's have all been fine. Another thing to remember--- if you've had an EEG, that also came back "normal", is that EEG's usually only show seizures/epilepsy if you are actually having a seizure during the EEG. Some of my EEG's have been normal, some abnormal and I definitely have epilepsy.

Plus, Not all seizures result in loss of consciousness or "convulsing". There are several types (simple partials, atonic, myoclonics) that do not result in loss of consciousness, but rather a "funny feeling", twitching, weird sensations, dizziness, fogginess etc.

My suggestion is to not be so quick in blaming the RSD/CRPS. If you haven't already, please get a referral to see a good NEUROLOGIST (a neuro specializes in the brain, a PM dr treats pain-- I would never let my PM dr touch anything to do with my seizures/ epilepsy). He/She can guide you in the best direction. I would ask for an EEG, sleep deprived EEG and a thorough work up. The last thing you need is to be dealing with seizures--- that could possibly get worse, especially if not properely treated.

On another note, some pain medications and supplements are also known to cause seizures, so, a Neurologist would be able to help figure out if that is what is causing them....

Good Luck, but please don't give up and automatically assume its the RSD/CRPS before investigating more !

L2L

thank you for this post, as I know somethingis wrong, I had another bad one yesterday, my husband found me on the kitchen floor unconscious, so either i am having seizures or something is suddenly dreadfully wrong with myy meds. Im frightned, frustrated and trying to hang in there, I remember being like a ping pong ball banging around the kitchen trying to hang on to consciousness and then blacking out at the stove and falling. I remember the begining. See why it is hard for me to belivie im not having seizures of some kind. actually it was more like a ball in a pin ball machine, I could have been seriously hurt instead of just some bad bruises and a couple of bumbs on my head. We cant seem to find out what is happening. But I have not had any of the tests you recommended. Im trying to hang in there, thank you again. cz

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