If I have ALS ?

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samueletienne

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Hello everyone,

Thank your attention, I really appreciat it.
First of all I read so many previous thread and as well regarding the one before to post.

I will tell you about my story.

November 2019: I noticed I lose so many weights (average 20 kg), it was very weird because I practiced 3 years active fitness center to maintain my health and my body.

I felt like maybe I should practice more sport to gain more weight and eat more.

December 2019: After trying to do my usual sport (3 times per week), I got several severe cramps for all muscles (mostly my calves) I trained for my last session. For examples when I did some squat seance, it was impossible to talk due the pain so awful.

Janvier 2020: Then I knew something wrong happen with health or body, so I visited my doctor. We did many and complete blood tests concerning vitamins etc.… thoracic scanner. And totally nothing wrong.

February 2020: I lost muscle all over my body, my joints begin to be “clicky” even my jaw when I’m eating for example, I can hear it and when I open too much my mouth. To kneel I heard this from my knees etc.

Then my doctor sends me to a Neurologist.

The evolution about my muscles was very fast within 3-4 months I see the wasting of my muscles progress. I have many old photos from my previous years that show a big difference in muscle loss.

March 2020: I did several EMG on my limbs with 2 different Neurologist, some was clean and the other Neurologist saw some abnormal activity. My nerves do a chronic die and regenerates, not active. But maybe when you the ALS start is begin with only chronic?
Then my neurologist asks to do the 2 MRI for brain and spin. The results about those were totally normal. For the next month she as well asks me to do the TMS to see how is my upper motor neuron.

April 2020: I got the blood test about antibodies and was clean and same as for my TMS test.

After all these tests, the 2 neurologists follow me don’t explain what happened. They aske me if I have another symptom I didn’t notice and maybe could be related.

So, after thinking about that we trying to see with my PCP what another symptom I have. In fact, the first thing I didn’t at all related it’s after drinking I have hiccup and mostly with drinks with gaz. (Pepsi etc.)

I remember when I was teenager, I did some gastroesophageal reflux. But for this time, it’s totally different because I don’t feel anything burn or hurt in my oesophagus. The symptoms look like more you’re drunk sometimes you have hiccup.

May 2020:

I see with my PCP to do some exams with ENT specialist for my suspicious dysphagia with liquid, and a gastroenterologist if isn’t gastroesophageal reflux.

Regarding for the last everything he clear for him. For the test video fluoroscopy, the ENT specialist can notice some little dysphagia with liquid.

June 2020: Last test for my PCP to search diagnostic differential, see a thyroid specialist.
I did again some other blood test regarding my thyroid. Everything is clear.

So now I’m in the trouble still my neurologist with medical follow-up and don’t explain my symptoms. They notice I lose some muscles, brisky reflex, nerves do a chronic die and regenerates and my fasciculations.

Finally, the summary of my symptoms:

Extreme tired every day.

I lose mostly all my strength, but I can’t still walk (not so much)

A lot of cramps for a little exercise (arms and legs)
When I use too much my muscles (arms or legs) I’m not able anymore to use it. (footdrop). The fasciculation and the tremor are totally worst after using my muscles.

I noticed as well when I’m outside with very cold weather my neck some “spasm”, so maybe widespread fasciculation?

And getting to be worst and worst these last few months...

All my muscles are atrophied (hands, calves), my wrist, ankle, kneel are so “fit” now, all my joints are “clicky” even my jaw. When I compared my previous face and right now, it’s so slim now, I lose so many cheek…

My cervical very clicky when I look left or right for example. When I’m working long time with my computer (I’m IT engineer) my trapezoids are so painful. I heard from the neurologist as well the first muscles affected my LMN is the trapezoids/shoulder.
I cannot able to stay long time standing, walk and even wash the dishes for example.

Regarding my dysphagia, I have hiccup when I’m drinking too much, and mostly for soft drink. Some discomfort thing like I have the liquid is still little stuck in my throat. It’s very hard to explain this feeling. And getting to be worse every month.

To be honest of course I’m little stressed and afraid. Who could be not? My symptoms evolved rapidly at the beginning mostly about atrophy, it’s not really falling, But I saw atrophy “generally” follow failing. So why not? Mostly if I have to remember really the first symptoms in my timeline it’s really about this dysphagia regarding liquid.

I tried to be the most impartial about my symptoms. I’ve never been hypochondria in my life. I want your advice and help from this forum and know what do you think.

If you want any result of my exam like my EMG, I can share to you.

I saw my neurologist last month and she did a DNA/genetic test but she didn’t really clear for what reason.

Thank you again,
Have a good week,
 
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lgelb

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Yes, please post the EMG and any other results, with identifiers removed.

To answer your question, ALS does not begin with chronic denervation and advance into acute. And to address what you think someone told you, the shoulder is not the first part of the body affected by ALS or LMN dysfunction, not either.

Have you lost weight?

What is your neurologist's latest plan?

Best,
Laurie
 

samueletienne

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In the attachment the 4 different EMG I did. It's write in French but I think you neef just the result of the EMG.

Yes I lose so many weight the first month about my symbtoms like maybe 20 kg I was 88kg average and suddently in 2 or 3 month 78kg. I tried to eat more, more calories and everything. I gain some weight but just only fatness and only on my belly.

About the plan of my neurologist just waiting the evolution and waiting for the genetic test...
 

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  • 1er EMG_biffé.pdf
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  • 2ème EMG_biffé.pdf
    229.8 KB · Views: 38
  • 3ème emg abnormal_biffé.pdf
    2.1 MB · Views: 38
  • 4ème EMG-PEM_biffé.pdf
    1.1 MB · Views: 29
  • Rapport Sanguin_biffé.pdf
    3.8 MB · Views: 33

lgelb

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These are normal results, and the reports clearly state that you do not have ALS. You certainly have the right to ask about why and what genetic tests were done, and should work closely with your neurologist to determine whether further referrals are needed. But I don't think we have anything to offer you here.
 
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