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stx5m

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Looking to hear your perspective, fatigue->bad swallowing->imperfect emg->twitching

Hi Everyone,

Before I start, I just want to say that I truly appreciate your perspective and taking the time to read this.

I am a 25 year old male who has had various symptoms for the past seven weeks. I know based on my age ALS would be extremely unlikely, however, I was hoping to get the opinion of the experienced individuals on this site. Here is a rundown of how my symptoms have progressed:

Week 1: Started with sensory symptoms in legs/arms/back regarding temperature (not indicative of ALS, I know)
Week 2: Fatigue worsens and sensory symptoms continue, Begin to lose weight. Drop from 158lbs. to 150 lbs.
Week 3: See GP who immediately refers to Neuro. Neuro thinks MS is a 50/50 chance, I randomly ask him about other possible causes and throw out a list of a few things which ALS was on. (I had just started experiencing some difficulty swallowing). He said the youngest person who has ALS is 28 and that there was no way that could be possible. Have MRI which was almost perfecct, 5 very small spots, but too small to indicate MS. Neuro gives me 1 regimen of oral steriods
Week 4: Weight goes from 150 lbls. to 145lbs. See another Neurologist for second opinion. Second Neuro thinks MRI is completely normal. Does an EMG on both my legs. Mostly normal except my left (sacral? nerve I think). One of the nerves near the bottom of my left foot which was low. Begin having nerve twitching in different parts of my body.
Week 6: Swallowing difficulty worsen, fatigue continues, small fasiculations begin to occur all over but mostly on the left side of my neck and in my left leg, sensory symptoms are still present, I have lost a few more pounds and am now at 142.

The reason I am concerned now is that the swallowing difficulty, fatigue, weight loss, and fasiculations are now the primary symptoms I am experiencing. The sensory symptoms have always been extremely mild. I also did a micronutrient test myself recently (test the level of compounds in white blood cells) and my results showed low of Glutamine, Glutathione, and Cysteine. The glutamine was particularly concerning since I know in ALS the white blood cells overload the nervous system with glutamine, creating an environment of neurotoxicity.

I know it seems like I am jumping the gun, but I have a biology background so I think about these things. If I were to be diagnosed with ALS, as futile as it might seem, I know based on my personality I would do everything in my power to learn as much as I could as fast as a I could to come up with any way to slow progression.

Thanks for reading if you got down this far, and let me know your thoughts.
 

ottawa girl

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Re: Looking to hear your perspective, fatigue->bad swallowing->imperfect emg->twitchi

Seven weeks of symptoms - 2 neuros - self testing - You are, I think, indeed jumping the gun and your mind is working overtime.

Swallowing issues, twitching, weight +/- etc. can be and are often exacerbated by stress and anxiety.Nothing you describe is anywhere near my own personal experience, and which is my only measuring stick.

I honestly don't think you have ALS. Keep following up with your doctors for an answer, but know that the diagnosis process can be a lengthy one. You need to learn to relax in the interim. Curb that biological brain of yours and re-focus on other things; otherwise you'll drive yourself bonkers.
 

stx5m

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Re: Looking to hear your perspective, fatigue->bad swallowing->imperfect emg->twitchi

Thank you so much for the response (especially the fast timing!). I have seen a lot of your responses on this part of the forum, and really appreciate that you take the time to offer your perspective.

Your advice sounds spot on. If nothing else, atleast my awareness of this condition has been improved, and as soon as I get better will definitely be donating to the ALS Association.

Michael
 
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Re: Looking to hear your perspective, fatigue->bad swallowing->imperfect emg->twitchi

:( Just to let you know, young people can get ALS too.
 

YummyDrFood

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Re: Looking to hear your perspective, fatigue->bad swallowing->imperfect emg->twitchi

How is this helpful at all Outdoor? You're throwing out ridiculous longshots. I can get struck by a meteor, but keep in mind one person has been struck out of countless millions. How about I tell you that the next time you walk across the street, you will get hit by a car? That has a MUCH greater chance than getting ALS at ANY age. Go away troll.
 

Grateful

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Re: Looking to hear your perspective, fatigue->bad swallowing->imperfect emg->twitchi

hi

Well, this is the point traditionally where I explain that a close family member, a 25 year old female, went down with a pretty terrifying collection of neuro symptoms which put her into hospital for well over a week; after very intensive evaluations her doctors concluded that it was viral in nature, and that it would go away when it felt like it.

That was 18 months ago and it did go away, though just when we think it has gone for good it flares for no apparent reason. But the intervals are lengthening and we hope it will finally give up in the not too distant future.

It's certainly not fun, but it is a million times better than ALS, and I too would urge you to curb that biological brain of yours. The 25 year old female, now 27, is a doctor herself, though not a neurologist, and I don't think it helped her. Ignorance may not be bliss but a little learning can be a very dangerous thing. I wish you the best of luck now and for the future!
 

MLRMLR

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Re: Looking to hear your perspective, fatigue->bad swallowing->imperfect emg->twitchi

My Husband had/has same symptoms and was tested positive for Lyme's disease. Als is not ruled out, but we are treating the Lyme portion. So far no improvement, it has been since mid May for treatment for lyme. He is very weak and Fatigued. I am so sad . it's so hard not knowing for sure what you have. Have a lyme test done at igenix in California. Look up true spelling. That's one of the true readings you will find.

Good luck.
 
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