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Cara.

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Learn about ALS
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South Carolina
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Spartanburg
Hello, I'm new to this site, and to ALS..
I'm 35, and been diagnosed with hypothyroidism and hashimotos about 12 years ago, narcolepsy ab 7years ago and last year I was diagnosed with dysautonomia and POTS (postural orthostatic tachycardia syndrome) those are auntonomic nerves system disorders which causes my heart rate to jump 30+bpm when I stand..
Well, about 6months ago I started having muscle twitching and spasms, now there everywhere, normally 5 mins doesn't pass without something twitching or spasming and now I've started jerking, my leg or arm will jerk, like a reflex that I didn't do,, I have muscle weakness, sometime bad, horrible muscle fatigue, sometimes one or two of my muscles will start hurting, badly, it feels like I'm straining it or over working it and won't stop but I won't be doing anything.
My leg went numb a few months ago, like it was asleep but not tingly, I went and seen my neurologist an he did a nerve conduction test on my legs and said I had a delayed response and said it was from a pinched nerve, but it doesn't feel like a pinched nerve,, I told him about my arms but he didn't check or test them,, sometime just using my mouse or driving wears my arms out so bad I can't hold them up, I have to rest them for awhile.
The muscle twitches and spasms are everywhere, face, arms, hands, legs, feet, toes, gut and stomach.. My face hurts all the time and my ent told me about 2 years ago it was because of the muscles in my face being tight, causing pulling and pressure on my face and sinuses making it feel like its my sinuses and lately my face and tmj have been hurting so bad I'll want to cry, heat and hot water seems to help because when I get out of the shower it feels better.. I've also started having problems swallowing, it feels like my muscles just don't close or push the food down all the way, it doesn't happen all the time, but its bad enough to where every time I eat I'm very carful, I'll have to keep swallowing , my muscles get wore out very quickly and need a break, like if I'm folding clothes I can only do a few then my arms have to rest.
I've also started the last few weeks feeling like a hair is tickling my foot or hand but nothing will be there and ill get like a burning zing, like an electrical shock but not strong in my hands and feet.

Does any of this sound like ALS?
And if so is there tests I can ask my dr to do,, I see him Friday,, and I know if I go in there without any info or sound like I know what I'm talking about he'll tell me it's nothing to worry about, it's normal or its just a pinched nerve.
People that deal with ALS daily (y'all) would know more, so if this doesn't sound like it or I shouldn't push it, just let me know and I'll take y'all's advise.

Thanks so much
 
Hi,

I just finished reading your post but, the symptoms you describe don't sound like ALS to me.
Just to clarify, I'm making the above statement based on my own ALS symptoms since I'm a person living with ALS, but I'm not a Doctor.

So, my advice to you would be to follow up with this Neurologist who is treating you and, if you are not satisfied with his/her answers, then seek a second opinion from another Neuro.


Good luck to you.
 
Thank you!

I've tried to read up on it myself, but I couldn't really get much info except "muscle twitching, spasms, weakness, problems swallowing which I have all of them, and didn't know what else to do, I'm sorry to have bothered anyone, I read the muscle weakness vs fatigue after I posted the question and felt horrible!
I should have read those posts first and I will be reading them before I post anything,
I just know how drs are, when I was diagnosed with POTS, it was only after I pushed and wouldn't give up and my doctor still wouldn't take me seriously until I was accepted into the Vanderbilt clinical trial with a positive diagnoses,, so I didn't want to just rely on the doctors.
I had my genotyping done through 23andme and then entered the raw data into Prometheus, and I had so many possible ALS genotyping I had to look into it.

But thanks again!
 
How well controlled are your thyroid issues? Sometimes thyroid can do a lot of what you are describing. I was hyperthyroid years ago so when I started having symptoms they tested my thyroid first.. Since you also have POTS wondering if your symptoms could be fibro or CFS? I know some people with POTS also have CFS. In any case, I would continue to follow up with your physicians. Could also be Myasthenia Gravis since it sounds like your muscles get weak and fatigued but it is pretty rare like ALS..Good luck.
 
Thank you!

I had my genotyping done through 23andme and then entered the raw data into Prometheus, and I had so many possible ALS genotyping I had to look into it.

But thanks again!

Not really sure about an ALS genotyping. From everything I've been able to read the pathways and environmental factors that may cause ALS is still very much a mystery. I'm hopeful that the experiments with propofol might help researchers with some of the mysteries. Since there is no test for ALS it should be the least of your worries with so much else you have to deal with health wise.

Don't let a 99 dollar test from 23andme bring you to ALS at this point.
 
Cara

I should make it clear at the outset that I don't have ALS; total physical wreck yes, ALS no. Nor am I a doctor.

However, I really think you should see your ENT again; you may have sinus infection causing the pain, and the thing about pain is that it really messes up your mind. Things which would normally never bother you suddenly become a nightmare from which there appears to be no escape, and the fact that you can relieve it by heat suggests that it is not psychosomatic.

As to the swallowing issues, problems with swallowing food are not the thing to worry about with ALS; it's problems with swallowing liquids which are a possible ALS indicator, so that is a plus point for you.

I hope you feel much better soon, and I wish you the best of luck!
 
Your story is similar to mine.

You may just have fibromyalgia. Lyrica (sort-of) helps it.

If a hot bath helps you, that may be a good sign you also don't have MS. Usually one would have a heat intolerance with MS. It may be psychosomatic if heat helps, I think. It naturally calms you down.

Hyperthyroid also can share similar symptoms.
 
Hi

I am on the same page.

I started with tenderness in thighs and arms and feekling weak. Pain all over my body. Then the twtiching started in my legs. Then my muscles felt terribly weak in my calves. I also twitch mainly in my legs but also in my torso sometimes. Ive had an emg of right and left side (clean) NCV of both sides (Good) 4 MRI's (clear0and I am still twichting and feel weak and have issues with tenderness feeling and buzzing was terrible in my feet but is gone and I am left watching legs twtich and tremor some days are worse then others with no real reason.... I have gone to a good neuro no diagnosis. I have gone to rheumotologist no diagnosis. I am a 35 yr old female. I also get very fatigued never now when that will strike. I worry about ALS as I have two friends one has soon passed and the other has been diagnosed for 2 years.
 
Cara,

Your dysutonomia and POTS can be associated with the vagus nerve. Not a lot can be done but I have found some neurological chiropractors that have done miracles with me. They address the pain and eliminate it. The technique is called Active Release Technique. You can search for it and find the website with a provider search. I went from Vicodin to methadone as the pain got worse. I haven't had any meds this year. I experience much of what you do. I went to a "nerve friendly" diet from reading about ALS.
 
Thanks y'all!
My pots Neuro thinks possible myasthenia gravis, I took mestinon for a few weeks to see if that would help, and after about 3. Weeks I stopped bc it hadn't helped the twitching, spasms and jerking, but when I stopped I noticed that it had been helping keep my muscles from getting so fatigued so quickly, I noticed that pretty quick, but I'm gonna wait to see my Neuro again before starting anything again,, I went back to my ent last week ab my facial pain that my ent said was from the muscles in my face ( I seen a different ent but at same office) he said it wasn't sinus related but that I was having facial migraines (I'd never heard of such!) he said it was kinda rare (I'm thinking great! Something else rare!) and said he would normally start me on migraine meds but bc of my pots and dysautonomia he would rather my pots Neuro do that if he feels it would be ok.
I seen my narcolepsy Neuro last week also and he said with the swallowing issues I could do a swallowing test, but didn't get into details so idk what that is or when it would be, he didn't say, and he said he didn't think the twitching and stuff was neurological. So idk.
But thanks for all the help! I am gonna look for a chiropractor that does that and see if it helps (I don't remember what it was called but I took a pic of it and gonna look it up )
:) thanks again!
 
Cara - I thought that I was having ALS symptoms for a while too and I was in a complete panic for weeks on end. Turns out my neurologist thinks it's likely MS since they did find lesions in my brain on my last MRI. I have twitching, weakness that comes and goes, spasms, vibrations, buzzing, numbness, memory confusion, etc. Your symptoms don't sound like ALS to me, but I'm not a doctor. It sounds more like fibro or MS. Montel Williams has MS and has excruciating facial pain that he deals with. Have you had an MRI yet? A good neurologist will start from the top and rule things down from there.
 
Cara
Facial migraines are indeed rare but would certainly explain some of your symptoms; it's good that the ENT specialist is being cautious and not piling in with medications which might mess up the diagnosis of your other symptoms.
It is good that your neuro doesn't think the twitching etc. is ALS related; obviously the symptoms are really nasty but just about anything is better than ALS. It's possible that it's a virus; a close family member had very similar symptoms and it has taken over a year for them to go away. Indeed, just when we think everything is ok it starts up again, but fortunately it seems to go away again after a few days.
And that is the big difference between ALS and other problems; ALS starts and it does not ever stop. So, if you improve at all it's likely that it is not ALS; I'm keeping my fingers crossed that it's something which will improve either with time or once your doctors get a handle on what is causing it so they can treat it!
 
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