scaredallthetime
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- Joined
- Jul 28, 2016
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- Learn about ALS
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- Arlington
3 months ago I had a witnessed grand mal seizure. I thought it was an isolated episode, and didn't think much of it until I continued to have blackouts and had to be referred to a neurologist.
He prescribed me seizure meds but I haven't been taking them because I'm scared of the side effects.
About a week after the seizure, I developed random sacroiliitis (inflammation of the hip joint usually due to an injury although I did not have one) in my right hip that was found in a CT scan at the hospital when I went in for pain and severe spasming. After, my leg was weaker and harder to move around and continues to get harder to walk on and maintain my balance. About a week after the sacroiliitis flare up moved out of its acute phase, I started having muscle fasciculations that moved my toes (and ocassionaly make my right eye twitch) And since have moved to my calves, and are constant.
I saw an orthopedist last week that told me after an extensive physical examination and xrays of my hip that had been taken after the random sacroiliitis flare up, that the fasciculations weren't being caused by my hip or any orthopedic issue and that my neurologist was going to have to do further investigation like an EMG test.
My fasciculations are constant but isolated to my toes and now my calves, and I've been falling, and having balance issues, like standing up and my legs wobble, and when I try to walk when this happens I just can't for a period of seconds. I tell my legs to walk and they just don't sometimes and I wobble and can't get my balance and sometimes fall.
I was having balance issues months before the seizure, but was otherwise OK so I didn't think anything of it at the time. I've started having fasciculations in my tongue that I didn't notice until I developed a lisp and slurr my speech, I have a hard time pronouncing some words sometimes.
my vision is starting to blurr alot, im using eye drops constantly but even they dont fix the blurring and dryness, Im dropping things, I dropped my phone twice today and cracked the screen. I have an EEG tomorrow, and then an MRI of my brain next month, and a doctors appointment with my neuro in 2 months where I'm going to tell him everything that's started happening since the seizure (the last time I saw him I wasn't having these problems) I don't have any atrophy yet, but the calf I've been having problems with has been bruising all over for no reason, and I've been getting muscle cramps so bad they're leaving indentions in my legs.
Its all happening very quickly its been 3 months since the seizure and its all getting worse. Before all this I had been having problems controlling my emotions, I I was crying at stuff that I feel like shouldn't have made me cry. Sometimes all it takes is a commercial with a mild emotion provoking theme, and I cry. For like a long time, things are getting to me that shouldn't, and didn't used too.
I am afraid. Is there any chance this can be something else? Could it be the epilepsy and I just need to take my anti convulsants? I am so afraid. Please any advice or insight would be greatly appreciated, this is ruining my life.
EDIT: I forgot to mention I've also been seeing a GI because I've been losing weight rapidly. 3 months ago I was 190 lbs. I'm now 135 lbs unintentionally.
He prescribed me seizure meds but I haven't been taking them because I'm scared of the side effects.
About a week after the seizure, I developed random sacroiliitis (inflammation of the hip joint usually due to an injury although I did not have one) in my right hip that was found in a CT scan at the hospital when I went in for pain and severe spasming. After, my leg was weaker and harder to move around and continues to get harder to walk on and maintain my balance. About a week after the sacroiliitis flare up moved out of its acute phase, I started having muscle fasciculations that moved my toes (and ocassionaly make my right eye twitch) And since have moved to my calves, and are constant.
I saw an orthopedist last week that told me after an extensive physical examination and xrays of my hip that had been taken after the random sacroiliitis flare up, that the fasciculations weren't being caused by my hip or any orthopedic issue and that my neurologist was going to have to do further investigation like an EMG test.
My fasciculations are constant but isolated to my toes and now my calves, and I've been falling, and having balance issues, like standing up and my legs wobble, and when I try to walk when this happens I just can't for a period of seconds. I tell my legs to walk and they just don't sometimes and I wobble and can't get my balance and sometimes fall.
I was having balance issues months before the seizure, but was otherwise OK so I didn't think anything of it at the time. I've started having fasciculations in my tongue that I didn't notice until I developed a lisp and slurr my speech, I have a hard time pronouncing some words sometimes.
my vision is starting to blurr alot, im using eye drops constantly but even they dont fix the blurring and dryness, Im dropping things, I dropped my phone twice today and cracked the screen. I have an EEG tomorrow, and then an MRI of my brain next month, and a doctors appointment with my neuro in 2 months where I'm going to tell him everything that's started happening since the seizure (the last time I saw him I wasn't having these problems) I don't have any atrophy yet, but the calf I've been having problems with has been bruising all over for no reason, and I've been getting muscle cramps so bad they're leaving indentions in my legs.
Its all happening very quickly its been 3 months since the seizure and its all getting worse. Before all this I had been having problems controlling my emotions, I I was crying at stuff that I feel like shouldn't have made me cry. Sometimes all it takes is a commercial with a mild emotion provoking theme, and I cry. For like a long time, things are getting to me that shouldn't, and didn't used too.
I am afraid. Is there any chance this can be something else? Could it be the epilepsy and I just need to take my anti convulsants? I am so afraid. Please any advice or insight would be greatly appreciated, this is ruining my life.
EDIT: I forgot to mention I've also been seeing a GI because I've been losing weight rapidly. 3 months ago I was 190 lbs. I'm now 135 lbs unintentionally.
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