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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Hello I was diagnosed with generalized epilepsy in 2011 and diagnosed with rsd in 2012. The seizures always happened exactly the same way every time where I would get a possibility warning sign 20 minutes before that it might happen and a definitive warning that it will happen 10 minutes before. Every time i was awake and able to speak normally. Afterwards I would actually feel better as someone who is nauseated might feel better after actually vomiting. I had them constantly for years and knew the exact progression very well. By 2015 I had my last seizure. I continued to have photo sensitivity but the 20 minute warning sign made it so i was able to remove myself from a potentially problematic situation before anything happened.
Unfortunately this past April, due to negligence on a variety of people's parts, I had a seizure triggered by 20 minutes of flashing in a film with no warning. Everything when it started progressed like one off my moderate seizures in the past, which angered me because it could have been avoided had someone bothered to warn people with seizure disorders, but gave me no cause for alarm initially. Unfortunately, after about 10 minutes (I get cluster seizures over the course of up to 2.5 hours), something changed. I suddenly started demonstrating stroke like symptoms which has never ever happened before. The hospital was useless and accused me of abusing substances and My Neuro since the episode automatically rules out any potential problems like an actual stroke due solely to my age and the unlikely factor (ignoring that none of my medical history presents as normal and i have at least 2 conditions I am also supposed to be too young for). As I've found is typically the case, the doctors I've come across would rather dismiss me than handle a complicated issue that doesn't fit into the standard textbook list of problems.
Well basically what all this rambling is leading too is this: ever since that night i have developed such severe neurological issues that have continued to worsen over the past four months which have completely ruined my life and I can't find anyone to help at least look for the answer as to why. While I've had rsd for 7 years, it had started in my right leg from the knee down after hitting my knee in an exercise bike. A little while later I got into a car accident at which point my rsd spread too everything below my shoulders but wasn't too severe yet (painful of course but in terms of how bad Crps CAN get, not too awful) and since my seizures were already pretty sparse by 2013 I believe i was "safe" from an rsd related problem being triggered by the seizure. However, since the stopping of seizures my rsd had worsened drastically. The experimental treatment I did to help did in fact bring my pain and all issues associated with rsd down to pretty much an ignorable level. Unfortunately the treatment wore off (probably due to pushing myself physically through things like a retail job lifting heavy objects and standing for an extended period of time) completely a month or so before my seizure in April and My rsd came back with a vengeance. I started a diet right about at that time for other reasons and, much to my surprise, after a week my rsd actually lessened enough that I could continue with work (in a less strenuous capacity) and school with modifications. It was still there but by just this diet change I was at least not literally unable to see right from the pain which was huge. Well I explain all of THAT because the point is that for the first time I had my full blown rsd (staved off just enough by the diet I could push through with my determination but where it was clearly right at the surface trying to fight through) at the same time as a seizure.
I am wondering what, if any, known neurological problems could be associated with late stage rsd. I am especially wondering if it might at all be possible for a seizure to trigger rsd to spread to the brain (especially since the stage 4 rsd some dent existence of is specifically about rsd spreading to organs). Further, if the rsd might have already spread to my brain (merely affecting my brain in ways I didn't notice much because of my wonky medical history) before the seizure, is it possible it actually did enable my seizure to trigger a stroke? Or, if anyone knows anything about general neurology, is it possible regardless of rsd for a seizure to trigger a stroke or even what other neurological condition could resemble a stroke and then enable a person to continue to deteriorate over months affecting both neurologically controlled functions (ranging from memory and thought to speech and vision) and physical functions (ranging from weakness and semi paralysis to shaking)?
The most frustrating thing about all of this (after the whole doctors dismissing me thing and My entire life being ruined our course) is not knowing if/where one condition ends and another begins. Even my pains don't all feel due to rsd. I don't know how to separate out symptoms to group together for a cause. Obviously yes preferably a doctor would do that part, but as I'm sure anyone with Crps knows, doctors are not nearly as reliable off knowledgeable as the rest of the world seems to believe or as they themselves portray. That being the case, if I could at least figure out how much of a role rsd plays in this, I could better steer the doc in the useful direction. If I knew the chances were high that ALL of this is due to rsd I might be more willing to do the crazy experimental treatment I can't really afford because it means I'd have a decent enough chance that i could work again and pay off that debt, but since I have no answers or leads I can't risk the little money I do have/have been saving and now using to keep a roof over my head on a long shot of a likely small fraction of my issues.
As all of you know, living with Crps in a single limb is tough enough. Living with it minimally from the shoulders down, even tougher. Living with it so long that treatments no longer work is upsetting. Living with it so long that the only few docs who actually truly know the condition that they won't take you on as a patient, even more upsetting. Anyone who truly has this condition has probably learned just how tough it really is to get anyone without it to really understand and even to just get a doctor to listen (or find one who genuinely knows about the condition as opposed to all of those who have knowledge equivalent to casually hearing about it in passing and claim to qualified to treat/assess). Unfortunately I am in a situation where I actually say/feel the rsd is the LEAST of my problems and finding a doc is even harder, so I'm posting on this forum out of sheer desperation hoping that maybe someone has had something that might be able to indicate some link/pattern that might help or that might be able to help eliminate some causes or idk just help me in some crazy way that might help me pursue some course of treatment that might help me get even a shred off my life back. I was three weeks away from getting my bachelor's degree when this happened. I pushed through the challenges posed to me by my rsd as well as my other issues, taking six classes a semester, while working 3+ jobs so i could finish with my scholarship I worked really hard to get when i went back to school leaving my dream career field, turning down the department i worked six years to get into, so I could dedicate my life to helping people, and had the chance to graduate summa *** laude and in two honor societies, but because of this thing I couldn't finish my semester. I was given until three weeks into the next semester to stop my incompletes from becoming Fs which gives me until mid September and since I've continued to deteriorate as opposed to improve (or even at least plateauing), I don't see that happening. I went from being totally independent and driven to being almost completely bedridden and entirely dependent on others for even the simplest of things at age 26. I have not just lost all of who i am and what I've worked for but I've even lost almost all of the people i should have been able to call a support system.
Please if anyone has any suggestions or insights at all, please please let me know because at this point it's clear that if i have any hope for any kind of recovery it is only going to come from ME telling my DOCTOR what tests to run and what to look for.





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