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Old 10-15-2007, 04:25 PM   #1
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butchiesmom HB User
full body spasms/seizures, no one knows but they're getting worse

I've been through several car accidents plus one motorcycle accident (jay walking deer). The first car accident caused a seat belt bruise which left me in pain for quite a while. I slowed down to check out a yard sale, someone pulled out in front of me and stopped to enter the next driveway. I was rearended by yet another person.

The second, a broken nose, rib, black eyes and cost me a great jacket. Hit a large patch of ice.

The third, riding home with my husband on his sportster and a deer hit us. I learned how to fly but not land well. Ended with a broken hip, skinned knees which still bother me, my helmet shield split in half and cut my chin. It took 2 days for them to discover the hairline fracture in my hip.

I'd been diagnosed with Parkinson's 10/15/03 but a second opinion but it as essential tremor with remote possiblity it would ever grow into full blown PD.
I've been treated for Parkinson's all this time but with very unusual symptoms.

It started with my feeling slightly off-balance, then my body jerking back. My balance became worse, then my legs started collapsing on me. No warning, my legs and arms are actually quite strong, but they just gave out for no reason. I was using a walker.

Then, I started having over exaggerated reflexes to average things like a fork falling to the floor, or something in my face, like putting a piece of paper right in front of my face.

I was put in physical therapy, for my core muscles, and they started working on my neck. That's when things became worse. Foot stomping started, along with exagerrated reflexes and then went into full body spasms.

The falling has stopped, for the most part, but the reflexes are just as bad and the spasms have grown more violent. I'm afraid I'm close to whiplash with it and being alone during the day, I'm beginning to worry about my safety.

The spasms (as I call them) look like seizures, yet I'm aware of what's going on around me, and am alert when they finish. I do have confusion at times but it's usually before the spasms start. I have trouble with pressure behind my eyes which sometimes accompany the spasms and light (at times) of any kind is more painful than I can handle.

My legs, from all the months of spasms are almost cellulite free. My knees hurt constantly and the foot stomping leaves my feet and legs painful and often swollen.

My friend can tell when a bout of spasms are coming on, she said she can see it in my eyes as if I have a headache and squinting to help lessen the pain,

My psychiastrist, has me on klonopin, and adderall. I've been on
Wellbutrin for years so have been treated for mental health for years. This is not a mental health problem. Psych had a chance to experience the spasms and so has my chiropractor who can trigger them within seconds of working on my neck.

Nothing seems to help for very long. A few days and then they are often worse. I'm not a whiner, try to keep a positive attitude about the whole thing but tests are showing everything but what's causing the spasms.

We were at a wedding reception when someone took a picture of the bride and the flash came off in my peripheral vision. It caused an immediate bout of spasms which finally led us to leave the reception. The field test at the optomologist produced the same effects.

I'm tired, physically, and emotionally from coping with this for so long. I see a neurosurgeon for my back on friday and a movement disorder specialist on Halloween. No one knows what's going on except it's definitely NOT a psychiatric condition. It has a definitely physical cause but no one knows what.

I am willing to answer any question to clarify information I've put here.

Anyone have any ideas?
Anyhelp would be appreciated.
Gail

 
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Old 12-31-2007, 07:19 AM   #2
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grinche41 HB User
Re: full body spasms/seizures, no one knows but they're getting worse

I have full body spasms all the time and also was told that I have tremors. They did a psyche evaluation and there were no new findings.I too am hanging in the wind.I'm sorry I cant give you an answer.But please know this you are not alone.Maybe someone can help us both since our stories are a lot alike, except I have no known head injury of any kind, weird huh?Have you studied on line about mini seizures or low blood pressure or hypoglycemia?Cher Bear

 
Old 01-01-2008, 12:28 PM   #3
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josephdbigdaddy HB User
Re: full body spasms/seizures, no one knows but they're getting worse

hi grinch41
i've been epileptic since i was 7yrs. old and so i'm pretty well versed in epilepsy. what you're describing are Grand mal seizures.when you awaken from them your body feels very tired and drawn.as you begin to come out of them you're confused for a moment.one heck of a focus headache. you need to see a neurologist and find what meds. can hopefully help to control the seizures you're speaking of.whomever you're seeing now as a doctor can't be very well versed in this iilness.i hope this can help to guide you a little bit.remember you are not alone in this.

 
Old 01-06-2008, 04:16 PM   #4
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grinche41 HB User
Re: full body spasms/seizures, no one knows but they're getting worse

Quote:
Originally Posted by josephdbigdaddy View Post
hi grinch41
i've been epileptic since i was 7yrs. old and so i'm pretty well versed in epilepsy. what you're describing are Grand mal seizures.when you awaken from them your body feels very tired and drawn.as you begin to come out of them you're confused for a moment.one heck of a focus headache. you need to see a neurologist and find what meds. can hopefully help to control the seizures you're speaking of.whomever you're seeing now as a doctor can't be very well versed in this iilness.i hope this can help to guide you a little bit.remember you are not alone in this.
The neurologists can't give an explanation or a name to identify the cause. He did however suggest that it may be psychological and suggested I see a psychiatrist; so he just dropped me and said there was no need for a follow up appointment and that the MRI came out normal. And the visit to the psychiatrist was a short 20 minute visit.I felt I was under the gun and pressured to hurry my explanation of my episodes; while I was having another episode right there in his office.He said we will meet once a year or as needed. Needless to say I haven't seen him since.Which I don't understand I thought you have a need of a neurologist if you suffer from vertigo.

 
Old 02-28-2008, 02:09 PM   #5
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Tracy70 HB User
Re: full body spasms/seizures, no one knows but they're getting worse

Quote:
Originally Posted by josephdbigdaddy View Post
hi grinch41
i've been epileptic since i was 7yrs. old and so i'm pretty well versed in epilepsy. what you're describing are Grand mal seizures.when you awaken from them your body feels very tired and drawn.as you begin to come out of them you're confused for a moment.one heck of a focus headache. you need to see a neurologist and find what meds. can hopefully help to control the seizures you're speaking of.whomever you're seeing now as a doctor can't be very well versed in this iilness.i hope this can help to guide you a little bit.remember you are not alone in this.
hI josephdbigdaddy

My mom has been able to control her epilepsy all of her life by taking dilantin and phenobarbitol. Here recently she suffered blood clots in her lungs so they gave her Clotriman? Side effect was bleeding in the brain. She underwent Brain surgery and was fine for about a week. She then had one seizue and its been down hill every since. Multiple seizures so they added Depracote to the regime. Been in the hospital for over a month and they haven't gotten the seizures under control. She is always sedated. Please help I'm frustrated. Neurologist doesn't seem to know why she is suddenly having them seizures constantly. (everyday)

 
Old 02-28-2008, 08:46 PM   #6
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vickie45 HB Uservickie45 HB User
Re: full body spasms/seizures, no one knows but they're getting worse

hi iam not sure if iam epilepsy. or not but i did have seizures at age 4 i went to 2 different neuro drs and they didnt help the 3rd one i finally see now aunto maticly started me on depakote xr 1000 mgs a day i was having seizures allmost daily then id go for a few weeks without none then id get another and just before id have a seizure id get very confused and id just drop to the floor and my eyes would flicker everytime and i also have these weird dreams with mine i had a MRI and it came out normal but the dr who did it said he thought i was having seizures well now since starting on the depakote xr i have not had 1 seizure in over a month and i can drive again and everything the only thing depakote does to me is makes me very tired at times not all the time but it also could be i dont get to bed till 1am and get up at 6am my hubby is on 3rd and it makes it hard for me to get to bed early plus dealing with 2 girls ages 11 and 15 and my sister saw me have one of my seizures and i couldnt remember anything so she wrote a letter to take to the dr and he started me on the depakote and so far i been doing great iam so proud not having seizures like i was and i hope it contiunes i suffered 2 long yrs with drs telling me it was panic i have that too but i was also having the seizures and i mean they were bad i blackedout on the sidewalk once and ended up in ER and they thought i had overdosed on some meds and i also would faint for no reason id be in my kitchen doing things and id drop and yes id have the most horrible headache i could ever have i still have them and i take darvacets for that nothing else has helped ,and im due for another MRI but im waiting on my insurance to ok it so you do sound like its seizures but if i have epilepsy. or not i dont know my brother has it plus a aunt my dads sister ,so its very possible yours could be seizures dont ever give up i didnt i kept looking till i found a dr who would listen and im glad i did cause now im proud cause iam back to being me again where i dont drop all the time and i mean id drop all the time i had people over and right in the middle of talking id just fall i did it at my brothers the drs anyplace i would go id fall and even to and from the car thats why i couldnt or wouldnt drive out of fear and i hardly ever left my house because i was too scared id fall we even went out to eat and i dropped and i said no more im staying home and i just kept looking for a neuro dr who finally listened to me he went by my symtons more then the MRI cause i had my last one back in march 07 and i wasnt falling as much then it got worse in may then in june is when i got the horrible headaches.
vickie
hope that helps some but thats my exspreance ,

Last edited by vickie45; 02-28-2008 at 08:52 PM. Reason: ps i go back to see my neuro dr march 12th for follow up and to maybe set up my MRI and sometimes those dont allways show up

 
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