Currently worried about ALS.

[nh2929]

It all started about 6 months ago one day out of the blue both my arms just started kinda aching for no reason it was a weird pain that just kinda radiated up and down both arms for about 3 days and then it went away. I have always had migraines and they have caused me some weird symptoms from time to time but nothing like that. Well not long after that I started noticing twitching mostly random all over sometimes maybe staying in one spot for a day or 2 but I'm yet to notice any real weakness.

I did go to a neurologist and he did an emg/ncs on my right arm and an eeg(this was on Jan 9 of this year) and he said the emg was okay but the eeg show spikes that were possibly indicative of seizure activity(i think it was maybe just because I was very nervous and maybe moved around a little bit but I'm not sure) but he put me on a migraine/seizure medication and told me he didn't think it was ms or als. But I do sometimes feel jumpy like I might have hyperreflexia and have random little jerks.

Also since I went for the visit sometimes my mouth gets kinda sore from talking my neck gets sore and stiff and a little over 3 weeks ago I got diarrhea one night and acid reflux started at the same time. The diarrhea lasted on and off for a little over a week but the acid reflux still hasn't went away and now it seems I've got constipation. I've read that als can cause gastroparesis which can cause acid reflux and constipation.

 

[lgelb]

This doesn't sound like ALS. But when you are put on a migraine/seizure med such as topiramate, side effects are very possible, interactions with other conditions/meds/supplements are common, and not every med of that type is right for everyone.

I would seek out a second opinion with an epilepsy specialist on whether you actually have a seizure disorder that you need this drug for, whether it might be causing some of your issues, etc. There are alternatives in this category.

 

[nh2929]

Okay thanks for the response! And yes is it topiramate. One more thing, the neurologist didn't really check my reflexes. All he did was kinda had me rest the tips of my toes on the floor and used the hammer thing to tap the top of my legs like above the knee cap and nothing moved. I've been wondering if that was possibly testing for hyperreflexia.

I also forgot to mention that I do sometimes (not all the time) have a little bit of an essential tremor in my lower arms and hands and I sometimes get kind of a loss of sensation in my tongue. I never noticed any of this before all this started about 6 months ago.

 

[nh2929]

Hey sorry to bother again but I just have a few questions that I haven't been able to really find elsewhere and if i could get an answer it might could really help me put my worries to rest. So say if the als onset is in your right hand, would you have some sort of actual clinical weakness in the right hand/arm before experiencing any bulbar symptoms? And also if it does begin in the right hand would it most likely affect the right leg or left arm next?

Also I forgot to mention I'm 24 year old male in my original post. And I've read somewhere that 40% of cases of juvenile als is genetic and wondered if that's actually true? TIA

 

[lgelb]

Yes/probably/that percentage has been published, as you noted, though it's subject to the promptness of diagnosis, of course.

 

[nh2929]

Hi I was just wondering if anyone on here might would know how typical it is for als to affect the autonomic nervous system early on possibly even before diagnosis. According to Google it seems like GI/digestive issues are very common even early. I've stopped taking the topiramate and I still continue to have acid reflux and bowel inconsistencies(been going on for nearly a month and a half) and combined with all the twitching in have and things I mentioned above i just can't help but fear it may be als causeing gastroparesis.

 

[lgelb]

It would be uncommon. The effects on involuntary functions, which is what you are talking about, follow the effects on mobility in voluntary muscles.

If you have these GI issues, they are GI issues and you can see an internist or gastro for them.