Convinced its ALS

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Cmc2007

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Its been a horrible year so far trying to stay positive but this has hit me like a Ton of Bricks.
I was a healthy 37 year old, hit the gym 4-5 days a week. Married with 3 children and all of sudden the 2nd week of the year i felt really tired and body began to feel weak.

Decided to get blood work and slightly elevated calcium. Didnt think much of it but started to get bad cramps in calves. Got scared and went to ER. Re did blood work everything checked out fine but cramps never went away.

A week later first week of feb i started to have twitches all over my body. Got scared of course did the dumbest thing and googled. Since then its been horrible.

I went to ER again re did labs ran a CK test which came back normal. Was told its not ALS. But since then things just got worse. Im lucky my wife works for mayo clinic arizona and was able to get me seen. 2 mri of neck and brain. Brain mri normal Neck had some foraminal stenosis. But was told by doctor this wouldnt affect the weakness I had on my entire right side but she still ordered an emg.

EMG DONE FEB 17. Came back normal and saw a nuerologist who ran more blood work. Aldolase, Zinc, all vitamins and everything came back normal. Was told it was Cramp fasiculation Syndrome.

But in March developed a thumb Tremor in my right hand while the middle finger moves by itself. Lip and cheek quiver on right side of face and now my chest/pec on the right side is getting smaller. This is so crazy to believe my poor wife brother and parents have tried to so much to help but this just keeps progressing. Went from feeling perfectly fine to all of this happen.

My body has changed so much i used to be keto for many years and always took care of myself and now i cant gain a pound to save my life. Biceps and triceps as well as chest are super squishy. Nothing like ive ever seen or felt before. I told the nuero that i seen this is not Benign how could it be?? My forearms and wrists are getting smaller especially on my right side. But to this date my can still walk and move my limbs. I know how hard and long this can take. Its a horrible feeling when you notice all these things and you cant get any anywere.

Still have another nuero appt on the 19th of April at Mayo once again and hopefully can re do another EMG because this cannot be bfs or cfs. This damn thing just keeps progressing.

I will keep praying and praying for everyone here since this process is so hard and painful to be a part of.
It was just for me to believe since most people say you feel nothing but i felt something back in Jan. Right away my body felt off.
Now my right hand is weaker and its difficult to write and use the mouse on the computer. Hopeful to get answers soon

Also just wanted some feedback from people with more knowledge. Just seems like a complete nightmare. Superbowl Sunday i started noticing swallowing issues and its happend so many times since then. Just seems weird since its affecting my entire right side. Major cramp in right calf has been there months and the hand tremor. But muscles on whole upper body flaccid and turned into mush. That cannot be normal since ive been working out for years.

Right thumb is shaking a whole lot. Feels like its struggling to stay up.
Have nuero muscular appt at mayo clinic next week on the 19th.
Keep praying this could be something else
 
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lgelb

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I'm sorry that evidently your post was overlooked. This does sound more systemic, maybe postviral, than anything. What was the outcome of the appointment?
 

Cmc2007

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Just had a 2nd emg at mayo june 1st. Needle emg was pretty extensive. It came back normal which im glad of course but its just so hard to believe.

Im a little over 5 months of symptoms but these symptoms just presist.

Ive lost an inch on my right forearm/wrist, my pec muscle on the right side as well is smaller than the left. And my right hand tremor just doesnt go away. I wake up with rigid muscles and some involuntary movements. The worst part is the swallowing issue and the weak gag reflex. I had a swallow study of course it came back normal but its not testing the muscle. Its just hard to understand what else these symptoms can be
 

lgelb

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What does your neurologist and/or internist think is still on the table, in terms of diagnoses? They should have a plan, unless they still think these are benign cramps/fascics? Or what?
 

Nikki J

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Mayo surely didn’t just give you emg results with no comment ?
 

Cmc2007

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They did stay with cramp fasiculations, there really isnt a plan. Doc said repeat emg in 6 months if systems presist.

There is just to much going on, i know that anything that is benign doesnt come with muscle wasting. The emg did say no signs of anterior horn cell disease or any other abnormality. I was twitching and cramping like crazy during emg and still nothing
 

Clearwater AL

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Cmc, no signs of anterior horn cell disease or any other abnormality is great news !
Now... un-convince yourself (as your thread title) it is not ALS. At this point you are
far from it. Twitching and cramps can come from so many other reasons and more
so from health anxiety. Again going back to your thread title is a sign of health
anxiety.

And... a diagnosis of Cramp fasiculation Syndrome by a highly trained and highly
educated neurologist... you're not.

I hope you can come to believe these very knowledgeable doctors and take
being convinced it's ALS off your concern. I hope one of them can help you with
your anxiety and resolve your other non ALS symptoms.
 

lgelb

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If the muscle wasting hasn't been verified clinically, it's hard to worry. And even if it is, that can relate to causes like disuse, asymmetry, injury, a change in lifestyle, whatever.

And it isn't true that wasted muscles are always serious anyway. All of us are getting older and typically some muscles get flabbier and thin out with age. That doesn't mean we [the ones without ALS] can't function, exercise, and prosper.

I would ask that what you see as wasting be evaluated (if it wasn't at the neuro consult), if you are willing to take "no problem" as an answer.
 
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Lkaibel

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Laurie is wonderful at sorting these things out, and she is so right about muscle wasting issues. Evaluate what you preview yes, but I think your motor neurons are in the clear. At this stage of symptoms I believe it’s virtually impossible that you’d have normal EMG’s if you had ALS.
 

Cmc2007

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I am uploading my 2nd emg, i know that its normal. Like i said i pray it is. Its just so hard to understand why not even fasiculations showed up if i was twitching the whole time.

I know time will only tell, its just i cant get these cramps and twitches to go away with anything that i do. And the muscle loss is the worst part. I mean the nuero stuck the needle right into my hand and wrist and even pec muscle that have muscle loss and still came out normal. I hope that is accurate
 

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Nikki J

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I don’t know what you want us to say. It isn’t uncommon for people with twitching not to have it show in their emg It doesn’t mean anything about the technique. 2 negative emgs especially when the issue is perceived atrophy are pretty definitive. Please reread Laurie’s post above and go back to the neuro and ask if there really is atrophy and if so what it means given your test results
 
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