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Suffering from all types of seizures and experiencing stroke/tia symptoms

Mon, 03/31/2008 - 15:05

my fiance had what appeared to be a stroke following a fall in late january 2007, in february on valentines day he started having what appeared to be mild clonic-tonic seizures. he started having just a few each day then he started having partial GM's as well adding to the full gm's, then he developed petit mal seizures too. they did every test they could do and then some, all tests came back normal, all of them. so they thought it was psychological and tried him on psych meds, only made the seizures worse. In addition with each seizure he loses another chunk of memory, at first just minutes, then hours, now he loses days, and his short term memory is greatly affected too. he was into extreme sports, now he is in a wheel chair, can't even move himself because his left side is toast, he has had two more apparent strokes one in may 07 and one in feb 08, again all tests, mri, cat, eeg, blood, everything shows no injuries no abnormalities. now he just keals over into a massive GM with posturing, trying to turn his body intoa pretzel, the wrong directions, loss of bladder and bowel, he stops breathing, and is post dictal for hours and losing whole days of memory. in Jan 08 they put him on klonopin, which lowered the number of seizures from 50-60 a day to 10-20, at least half of which are the worst kind. My kids and I tag team him to keep him from hurting himself, and we have the bruises to prove it. He tried to kill himself in late Dec and early Jan, he had had enough. He and we have no life but waiting for the next one. He is either in his wheelchair, or bed, mostly bed, and we have exhausted all medical knowledge in the stateof alaska. They want us to take him to Ca to Loma Linda but i don't see the point, it is obvious that the seizures and stroke like symptoms are comming from somewhere other than his brain, but they even ran cancer tests, all negative, so far they found three hernias, all from the seizures, a cyst on his right kidney and a couple bulging disks in his lower back, but with no nerve inpingement. We are at our wits end, and we have almost lost him twice due to stopping breathing during a seizure.                                                                 But and this strange and reinforces my thinking that he has a nerve inpingement, but in his neck, not his lower back. he had a very severe synchopy proceeded GM with all the trimmings, and when he fell he struck his basal skull and upper neck on our shoe rack, before I could get to him, he had been seizing for about 45 seconds while his neck was still on the shoe rack at greater than a 90 degree angle, I of course had to move him, a little ways to ensure his airway adn get him off the rack so his neck was able to be stabilized, i know it ws risky, but necessary in this case to prevent even grater injury to his neck from continuing to seize on the rack, he was transported tothe ER, which ahad told us months ago not to come back unless he had worsening or new symptoms because there was nothing they could or would do for him, all they did was an mri of his head and neck, which came back normal, as usual and sent him home, no c collar, no pain meds or nothing. Two days later he was back as per his doc, and they gave him the horse collar and sent him home nothing else. What is unusual is that teh day after the injury, he had only 9 seizures, seven mild fm's and two bad ones, 7 the next day, only one bad one, 4 the next day no bad ones, 1 the next day very mild, and none yeaterday, no seizures at all. Today as well he has had none, and it is 11 am here. Also, he can now wheel himself around in his chair, he still weak on the left side but can use it better than he has in a year, he is even walking a little better, though he still lurches like dr frankensteins assistant on all the old monster movies, he says, "just call me igor" it is nice to see him joke it has been so long. His doctor doesn't even know about the new developments as she is on vacation until friday, I am going to ask for a detailed MRI of his whole neck and basal skull, there has got to be a nerve blockage or bulging disk, somethig to explain why he is getting better after the fall, remember it was a fall that started all this in the first place, could the doctors have been missing the real cause all this time, even with several mri's and cat scans? I apologize for talking so much but I havn't had anyone to bounce this off of and the doctors won't listen, i have been officially labled a trouble maker. The only thing is is that his memory has shown no improvement at all and he is in a great deal of pain. he has pain radiating from the injury site through both shoulders and down his spine, but no tingling or lossof sensation periferally, so that is good.

Comments

Re:

Submitted by lorelama on Tue, 2008-04-01 - 07:31

I think it is time to find a new doctor. Or atleast get a second opinion. You may also, if you haven't already done so, consult a spinal injury doctor instead of relying on a neurologist (their scope is very limited just like a cardiologist) and if his doctor has referred you to somewhere else for possible injuries, not a good doctor.

I always tell people you have the right to change doctors if you are not happy with the care you have receiving. Over the past 30 years I have had 5-6 differant doctors. Mostly because they seem to come to a wall and refuse to go out of their comfort zone to make my quality of life better.

Good luck, don't stop asking for answers but make sure you are asking questions and not just demanding answers. Make sure you are logging his symptoms. I am glad to see he still has his humor, that is the only thing that has gotten me thru my 30 years of epilepsy.

God speed.

Lorelama MN Well behaved women rarely make history.

I think it is time to find a new doctor. Or atleast get a second opinion. You may also, if you haven't already done so, consult a spinal injury doctor instead of relying on a neurologist (their scope is very limited just like a cardiologist) and if his doctor has referred you to somewhere else for possible injuries, not a good doctor.

I always tell people you have the right to change doctors if you are not happy with the care you have receiving. Over the past 30 years I have had 5-6 differant doctors. Mostly because they seem to come to a wall and refuse to go out of their comfort zone to make my quality of life better.

Good luck, don't stop asking for answers but make sure you are asking questions and not just demanding answers. Make sure you are logging his symptoms. I am glad to see he still has his humor, that is the only thing that has gotten me thru my 30 years of epilepsy.

God speed.

Lorelama MN Well behaved women rarely make history.

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