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scaredallthetime

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Learn about ALS
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Texas
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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.
 
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Please put some paragraph breaks in that post. It is hard for anyone to read, and doubly hard for people with ALS to read.

You need to see a GP medical doctor. From what I could read, you're bouncing around specialists. But is any professional coordinating this investigation?
 
I'll put some paragraph breaks in I'm sorry again. I have an appointment with a GP in two months.

Its the soonest I could get in because I'm going through a county sponsored program because I lost my job when things started getting really bad.

I'm sorry about all the problems with the thread...

I would've had a GP to start with but I had just started a new job in between their enrollment period, it was in September.

And since I was healthy and nothing was wrong I thought working until then wouldn't be a problem. Its been pointed out many times that I was irresponsible in not having health insurance during this period.

Everything started going wrong so fast, and because of Texas law I had to see a neurologist for the seizures before a GP. And got reffered to the other specialists through the hospital when they couldn't investigate the other problems further.

I meet my GP august 18th.
 
I should have gotten the ball rolling sooner, but I ignorantly thought the seizures and sacroiliitis would be the brunt of my problems, and the hospital that treated them told me it would clear up in around a month and that I would be okay.


In hindsight it was a horrible choice, since like I mentioned I had been having blackouts and balance problems, before it like the wobbling and telling my legs to move and them not doing it.

I didn't start to realize there was a bigger problem until the fasciculations started on top of it. And for that I'm sorry. And I'm sorry to post here like this.


I know a lot of people worry about ALS and it turns out to be something like BFS and that's what I'm hoping for. But all the balance problems and falling preceding the fasciculations make me scared.

Along with all the bruising and the way the fasciculation are happening.
 
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The good news is ALS NEVER starts with what you have experienced.

I'm sure it's very frightening however. A neurologist is probably the best kind of specialist to see, as they deal with all manner of neurological issues, in fact not many of them deal with ALS.

I hope you get to the bottom of it all, but ALS is sounding the most remote possibility.
We only know ALS here so can't speculate on what else it might be.

All the best
 
The good news is ALS NEVER starts with what you have experienced.

I'm sure it's very frightening however. A neurologist is probably the best kind of specialist to see, as they deal with all manner of neurological issues, in fact not many of them deal with ALS.

I hope you get to the bottom of it all, but ALS is sounding the most remote possibility.
We only know ALS here so can't speculate on what else it might be.

All the best


Thank you. That's comforting to hear. I understand other diseases are a possibility, but what I am afraid of is ALS and hearing that makes me feel better. Thank you guys so much. I hope its something as simple as a rare form of arthritis or just really bad epilepsy.
 
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