I stumbled across this board/site today while trying to research my own medical mysteries...since I can't seem to get any of the dr.s to put out the time or effort in doing so.
In 2008 I was found on our couch not breathing and twitching..they classified it as a seizure because in my past I'd had seizures before. However, this was after I was put into an arm cast for 8 weeks due to what they said was most likely tendon damage (they really never could figure out what it was, but on the round protruding bone on my left wrist, just touching that spot would send me through the roof..I couldn't move it or lift with that hand either). I never linked that wrist issue with anything until today. They put me in the hospital because I was not coming out of the seizure as they had thought I would...I was very weak and in a lot of pain, which was not normal. I was transferred to another hospital where they started me on anti-seizure meds (one of which knocked me out COLD for 3 days straight!!). After a week of playing with meds they sent me home...I wasn't able to walk without help, was dizzy all the time, couldn't see right but they didn't know what else to do with me I think so they just sent me home and said she will adjust to the meds...give it time. So, a year later, I'm still in bed...having the same things go on and my pain would uncontrollable. I continued to have 'seizures' and the the anti seizures meds seemed to do nothing for them...so they kept increasing the dose which made everything else worse. I basically slept in pain for a year of my life. Finally, my family doc sat down and tried to figure this out for himself since these 'speciailist' weren't doing me any good. After running tests himself and doing some research, he felt there was a great possibility that I had Parkinsons Disease. The pain, trouble swallowing, trouble with my jaw aching, I would tremor/twitch a lot...there were a LOT of signs..so the final test was to try the meds and see what happened. He put me on Mirapex and that very same night...I got out of bed for the first time in a year!!!! He was convinced....it had to be PD. I continued to have problems with the 'seizures' but even those decreased. I still had down times where it didn't seem like anything helped, but...the Mirapex was doing something! Let me explain my 'seizures' though...because at this point, I'm wondering if they are really 'seizures' at all. Normally they progress in this manner: I am sitting and go limp, after about a minute I beging to twitch or my arms will move around in a very slow manner...this goes on for about 5 minutes and then I pretty much just pass out. Upon waking (which is usually about 20 minutes or so) I am very tired and will sleep for anywhere from 1-3 hours. Upon waking after that, my vision is very distorted for 2-3 days (it feels as though I don't have my glasses on but I do). I've had every test under the sun done and noone has ever been able to find a reason for my 'seizures', even directly following a 'seizure' they can't find anything. This is only leading me to believe maybe what is happening isn't a 'seizure' at all!!!!! I'm seeing a neurologist now who has basically told me that if I don't go back on the anti-seizure meds he will not see me anymore. Problem is...he also said, he would rather see me asleep all day then take the chance of having another seizure. Ok...I understand that but I have 4 kids, I'm a single mom and I'm taking classes online as well...I can't be asleep all the time! I refuse to go back to bed and miss another year of my kids lives! I tried to explain to him that when I was on the Mirapex I actually did better, he said there is no way that could be...that Mirapex isn't going to control 'seizures'! Ok, but isn't it possible that maybe they aren't?! I'm REALLY frustrated with this doc right now...it's take these meds or leave and that is irritating me to NO end!
Now, on top of all this, I have pain that is progressing quickly lately! It mostly concentrates on my left side but here recently, it's moving into my right side as well. On most days I can't even touch the top of my left foot as the pain is excrutiating. It feels as though someone is pulling the skin on the top of my left foot tight all the time or something, I guess similar to a contraction that never stops. This has been a constant now for at least 3 weeks and gets MUCH worse when I try to walk around. I can't wear shoes, just flip flops and even that is too much on it. The pain/cramping feeling used to only be in my left foot, leg and arm (and sometimes shoulder), however now, I feel it in my side/back and especially my neck (I even have a lump on my neck that the doc feels is tight muscle..like a knot I guess). On bad days though, this feeling has spread across my entire body...which it's NEVER done before.
Ok, now onto the part that confuses me the most....depending on my stress/anxiety level...I get tremors/shakes. My ex loves to cause me stress every chance he can...when he gets me stressed out...that is when I have what looks like Parkinsons symptoms. I stutter, I tremor (the bobbing around), my vision is affected and eventually, it leads to a 'seizure'! I have researched PD and find I do have a LOT of the symptoms, but when I got to your site this morning and started reading about the muscle twitching and things related to Fibro it got me wondering....could they have me all wrong? Could all this be fibro? I figured you all were a good place to start! I'm just hoping someone can make some sense of all the things that are going on and help lead me to a specialists that might be able to help!
Here is a list of my symptoms:
*Contraction/cramping type pain that mostly concentrates on my left side
*sore spots on the top of both feet (located near the little toe)...same spot on both feet
*sore spots on my wrists (the small protruding bone on the wrist)..same on both wrists
*sore spots on my elbows, again, same on both sides
*often have a feeling of heaviness throughout my body...like I have weights strapped to my body, epsecially bad when pain sets in
*weakeness, especially the left side
*inability to pick up small objects or hold on to things (when I try it tends to set off the tremors)
*vision issues (feeling as though I don't have my glasses on when I do)...almost like a foggy feeling
*the 'seizures' (I go limp, shake/tremor for about 5 minutes and them pass out)
*swallowing difficulties, trouble getting my mouth open to eat and jaw clicking
*very off balance at times (feeling as though I am walking a straight line when in fact I'm not)
*body temperature control is way off at times
*trouble moving around in bed (need to sleep with silky type pj's on or on silky/satin type sheets to help with this and to keep myself cool at night)
*grasping small items will bring on cramping feeling fast
*bladder control problems
....that's all I can think of at the moment. I think that's enough though!!!
If anyone has any input on this I'd love to hear it. I'm being faced with having to give up school, and my kids again to go back to bed for these meds that honestly, I don't think I need. Any advice you have would be great.
Thanks in advance to you all, may you all have a pain free day (yes, wishful thinking!)!!!!!