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Should I even bother checking it out?

Fri, 03/31/2006 - 16:29
Hello, I have had weird symptoms all my life but in the past few years have had a new problem emerge that is getting harder and harder to deal with. Here is my history, just FYI: From the age 3 - 10 I would space out and it would be hard to snap out of. Also had painful attacks in my neck that felt like a twisted mucle followed by a head rush. Age 11 - 21 I would blackout, get head rushes or dizzy upon standing, when it got warmer than say 72 degrees or when I exerted myself. Started having problems with neck and severe pain or it locking up. Age 21- 24 Still blacking out and all as above but add in 2 or 3 seizure like attacks where I fell on the floor convulsing for 2-5 minutes. Also, after having my son, had severe attacks, painful, confusion inducing, movement limiting attacks . Was told by doctors then it could be headaches or Bells Palsy. I was "too young" for a stroke. This lasted for about 3 months after birth. Age 24-26 Seizure like activity gone, back to previous symptoms. Age 26 Had a car accident where the exact spot on my neck where I used to have problems. Had a brain bruise and disconnected muscles. Also had a couch dropped on my head at this time. Was in severe pain for years with many attacks like TIA's or mini strokes. Also, now severely heat intolerant. Lived with relative for 5 years after accident as it took a long time to recover. Received no medical care. On 3 or 4 occasions after having a nasty attack, got up nerve to go to ER, only to be told it was stress or a head ache and to basically go away. About 3 years ago, started having small twitches in hand and neck. Was also having the decreasing TIA like symptoms at the time, so thought it was related. But, the TIA like stuff has finally gone ( I think, haven't had an attack like that in close to a year), my neck finally doesn't hurt 24/7, my headaches are subsiding BUT the twitching gradually got much, much worse. Now, I have what I have found out are full body myoclonic jerks about 5 - 25 times a day. These are followed by twitching in my feet or hands about 75% of the time and about half the time there will be a series of these myoclonic attacks, lasting about 45 minutes. These attacks used to just be brought about when going to sleep and then slowly eveolved into happening at the slightest bodily relaxation. Even sitting down to watch TV or stopping at a stop light brings it on. My episodes of spacing out are getting worse. I am slurring my speech more often (but not bad yet). I used to be a good writer but am having more and more problems with dyslexic like symptoms (I have had to edit the heck out of this). It's getting to the point where I have to purposely stay in a stressed mode or in an uncomfortable position while working or driving to keep from having an attack. Person to person conversation is getting harder too. Oh, and the attacks are always worse around my cycle (before during and after). I know I should see a doctor about this BUT my greatest fear is of being dismissed, told it's just a head ache or stress or what ever. BTW, I had an EEG when I was 12 (normal) and an MRI when I was 22 (nothing showed). I am now 31. If they ask me if I have stress, i'll have to say yes (single mom taking care of disabled child) so that will instantly get me the crazy stressed person DX. This is starting to really effect how I live my life and I am getting sick of it, but I do not want to waste my time visiting the doc eitehr. Plus, if the first doc I see gives me the stress crapola, I will give up then and there. I know me. It's taken me years to convince myself this is not all in my head due to the few remarks from busy dr's who saw me for 60 seconds. If I get it again, I don't what i'll do. I guess i'll just keep telling myself it's in my head and deal with it. Anyway, has anyone here gone through anything even close to similar? Does it sound psychological to you? Any docs here? Are there any good tests to request? How much info should I givew to keep from sounding like a hypochondriac (another fear :)) but still get enough info across? P.S. My Aunt has one of the worst cases of epilepsy in the US (she was written about in textbooks apparently) and I just found out another Aunt who is dx'ed with epilepsy has very similar symptoms to me but she has blacked out in public where I dont think I have done that. Ok, I just looked and saw how long this post is, so i'll stop now. Any insight or anything would be greatly appreciated. Thanks in advance!!!!

Comments

Re: Should I even bother checking it out?

Submitted by tlh64 on Fri, 2006-03-31 - 22:05
Hi spiraldreams. I know just how you feel. I am going through similar things, myself. I will pass along some advice I receievd from Dr. Benbadis, who is a leading epilepsy researcher. He advised me to consult with an epileptologist (neurologist who specializes in epilepsy). Apparently, there are a lot of small symptoms in epilepsy that normal neurologists do not realize are important in diagnoses. If you do not have an epileptologist in your area, contact you local chapter of the Epilepsy Foundation. They can give you the names of doctors that can help. Also, it helps to keep a journal of your seizures that includes what you were doing when they happened, what your behavior was like during your episodes (including descriptions from witnesses) and your behavior and how you felt afterwards. You also might want to include where in your monthly menstrual cycle you were in, as hormones can play a role in when you have seizures. The journal helps determine what tends to trigger them. It might help to really take a good look at this web site. There is a lot of good information here. From what I have read, someone with epilepsy may have normal EEG and MRI. You might even print out information you see on this web site and take it with you to discuss with the doctor. You might also request an information packet from the Epilepsy Foundation that you can discuss with your doctor. I hope I have given you some ideas that help. I know it is frustrating to go through. I hope you are helped. tlh64

Re: Re: Should I even bother checking it out?

Submitted by spiraldreams on Sat, 2006-04-01 - 14:32
tlh64, Thank you for replying to my post. An epileptologist is a great idea, but I checked my insurance's provider directory and there is only one neurologist and no sub-specialties. Of course. I guess if I am going to look into the i'll have to the whole PCP - Neurologist route and then if I don't get any answers, track down an epileptologist in driving distance and pay for it myself. The journal is a great idea too and I will do my best to keep one up (i'm a bit scattered mentally though). I'm going to write up my own history and take all the info I can think into the docs office and just hope I don't end up with an arrogant person who resents I actually did some work and research (has happened in past). Just curious, I guess a hypothetical here, but why does it seem like 95% of the dr's are arrogant, uncaring twits who only spend 5 minutes with you, if you're lucky and treat you like a nutjob if you dare suggest what you think something might be? It's like they want their patients to bow down, say ouch it hurts here sir (and nothing else) and pretend like they know nothing about their own pain or problems. Guess i'm just going to have to suck it up and get the hell over it and try to advocate for myself. Don't get me wrong, I have had some great doctors in the past. Wish they were around now :)...

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