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Susmadden

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Learn about ALS
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MA
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Boston
Hi everyone. I'm a 44 year old female. On Mother's Day weekend I almost choked on a roll at Bob Evans. I sat there not sure whether to cough it up or swallow it down. That next Wednesday the same happened with a donut. About a week later, one night my entire body felt numb & legs felt heavy and like I couldn't move or paralyzed. I was fine the next morning. Except I still couldn't swallow well and was living on rice pudding, oatmeal, applesauce...

My GP sent me for an upper endo and the doctor said he stretched my esophagus, but all was fine and put me on reflux med. Two weeks later, I still can't swallow right and have to take tiniest bites. Liquids are no problem. I have no other reflux symptoms.

About once a day, I get the same numb feeling all over. I've noticed twitching in my right pinky, right index finger, left thumb and right pinky toe. Especially my right pointer finger twitchs and pulls to the left. Sometimes it's pins/needles feeling too. It's worse when I first wake up. Friday in the shower I was washing my right arm when suddenly my left arm seemed to "forget" what it was doing. Seconds later, back to normal.

I was looking up symptoms and found this thread. I saw other symptoms such as tongue movement and when I stick my tongue out, the left has a constant pulse-like twitch on the side. I also can't stand on one foot without shaking/quivering. And I can't whistle like I think I should when I tried last night.

Does this sound like ALS? I'm really worried from my symptoms.

I'm able to walk fine and walked steps and a trail at a state park earlier this week and also another tour walk with steps.

As a back story, I stopped Byetta at this same time, days before my first choking, after taking it for ten years. I can't imagine stopping a medication for diabetes could mimic ALS so much. I see my GP again Tuesday.
 
Hi
Numbness, feeling heavy and pins and needles are not Als symptoms, and Als loss of function doesn't come and go it wouldn't be back to normal at any point. So your symptoms are not sounding like Als.

The twitching and swallow problems could be caused by a number of things so keep pushing your GP for further investigation, including discussing what effects stopping your medication would have.

I hope you find this reassuring, good luck

Wendy
 
Thank you so much Wendy. I'm still a bit anxious as I wait for my blood work. My doctor didn't seem to concerned this morning at my appointment, even when I showed him my tongue twitching, which he did acknowledge was odd.

He's putting me on Lexapro for a bit to see if that stops the shaky feeling inside.

Regarding my trouble swallowing, that seems to be better now. I ate toasted bread (chicken salad sandwich) for the first time since May yesterday and didn't have any trouble swallowing. And I ate lunch at Taco Bell today and didn't have any trouble. I still wonder then why my tongue is twitching suddenly.

I do think I'll try to get an appointment with a neurologist if I can do so without a referral, just to make sure there's nothing else going on. I'll give it a month or so first to see if the lexapro works.

Thanks so much for replying Wendy. Best wishes to you. <3
 
I'm going to go crazy before I see a neurologist. Yesterday and today I'm constantly feeling drainage and clearing my throat, like a constant nasal drip but no other sinus problems. My right hand is still shaky, my first finger didn't want to twist up my turban on my hair after my shower just now, and I'm having more random muscle twitches in new places.

No trouble swallowing liquid and my eating is better, but the sound of chewing/swallowing seems louder in my ears. And still tongue quivering.

I just feel so weak and scared. If I force myself to clean, laundry, shower, I'm a bit better because I'm distracted, but even these simple tasks are hard and different.

I'm so anxious. I've got a little one starting 2nd grade Monday and I want to be strong for him and my husband, not defeated.

Also, being able to stand on one foot comes/goes - sometimes I can do it, others I can't. I tried the heel walk backwards and it's ok.
 
You have mentioned that your symptoms "come and go"... that is not ALS.

You said that you looked up symptoms...

Know what makes a Neurologist smile at the end of a very profitable day? Google.

You said, "I'll give it a month or so first to see if the Lexapro works."

Please do.

Also, search for a Forum that is designated for those suffering from severe anxiety.

But... I got a good hunch this Thread will see a second page. :)
 
After this last post, I'm leaving this page. I don't want to waste anyone's time, but my fears are still real to me.

I'm going to take the Lexapro and see how I'm feeling in a month or so. The only other "new" symptom I've had is when I bend over to do something, like pick something up off the floor or a book from a lower shelf, there is a crazy amount of pressure on the front of my face - it actually causes my face muscles to feel like they are burning. I've never experienced anything like this.

If I were to have ALS, I guess in two months I would see the affects enough for my GP to notice. That's when I go back - two months.
 
Good morning! I'm feeling much better on the Lexapro - more relaxed and less Google. I am still nervous about the possibility of ALS though. I've been having a harder time with my hands doing normal tasks - like chopping potatoes the other day for instance - and there's also a strange dent in the top of my right hand. I don't know if it's been there for years, or I'm just now noticing it in my anxiousness to see every possible symptom. Does this look like hand atrophy to anyone? I can still type fine and play my usual songs on the piano, but I'm still worried.

 
Sussmadden, no. That looks like a weird thing on a hand.

Atrophy, in ALS, is very different. Think concentration camp survivor.

My wife's atrophy was simple: Her leg muscles lost their "muscular" shape and appearance--kind of just flattened out.

Here's why. In other diseases, atrophy might be caused by the disease, but in ALS, atrophy is a secondary symptom--it happens because the muscle has been lying limp and unused for months after paralysis.

I don't see any reason for you to think of ALS.
 
Hi Sus
It's certainly looks odd and it's worth asking your doctors advice, but it doesn't look like atrophy caused by als that normally happens after you lose function. I know it's scary but hang in there til your doctors appt, I hope they find some solutions for you soon. It really doesn't sound or look like ALs though.
Good luck
Wendy
 
Your hand looks fine. Perhaps you should get your anxiety under better control with some cognitive therapy and take a close look at your diet. You seem to eat a lot of junk and processed food.

Nothing you posted even remotely resembles ALS.

Best wishes.
 
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