ALS Symptoms/Anxiety 27M

[Zach480]

Hello everyone,

Thank you for who ever has the time to read/shed some light on this post. I’ll try to be concise.

27 y/o Male. Anxiety about having ALS.

Symptoms: muscle twitching in both legs and feet constant. Some in arms, and back, and chest twitches, tight calfs, cramping in left foot inner arch, both thighs tight, inner hamstring cramps. Started about 10 days ago. No clinical weakness - can still button shirt, do acalf raise, lift foot etc. cramping makes walking painful. Mild cramp in left thumb and hand twitches sometimes as well. Sometimes the cramping feels not as bad as other times. But always generally present. I feel like I also do not enunciate as well as I used to. Saying things like “mural in Ireland”are challenging. I do realize that fixating on it can make speech worse. I have some facial twitches as well. Can still eat and drink normal. Tongue strength seems fine. Face does feel tight though.

PCP ordered blood test. Ck level normal creatinine level normal. Electrolytes normal. As I understand it, muscle waste is present when stiff and cramping, so with normal Ck, it’s likely that I don’t have muscle waste. I have certainly lost sleep over this worry. Haven’t wanted to leave the house for a week. Laying around more often than not. Fortunately been able to work from home. I am guilty of having some health anxiety prior to worrying about ALS. I’m hoping this is just another example of my mind playing tricks on me. PCP thinks ALS is unlikely and referred me to Neurologist for reassurance where he’ll do an EMG and physical test on the 30th.

it still feels like a coin flip on if I have ALS or not.

I guess my question is - are my symptoms so all over the place that it doesn’t exactly line up with ALS? I’m trying to hang on until my appointment on the 30th but the anxiety and worry is taking an extreme toll on me and my family. This is in no way to disrespect the people currently diagnosed with this disease. I am not trying to do that at all. This just seems like the community with the best knowledge on this topic. If anyone has any words for me on my situation I would be eternally grateful.I know this is generally not a community of doctors, but with your vast knowledge on this topic, if anyone has any lean, I’m all ears.

Thanks,
Zach

Extra note: have higher than normal heart rate when walking. I’m usually in the 90s while walking around. Lately been north of 130. I have bad cardiophobia in the past. This symptom had me worried about hyperfelexia since it has been paired with me being “jumpy”

 

[affected]

Hi Zach

Try reading this through slowly a couple of times to absorb all that it says as it is important.

Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms

We will try to answer reasonable questions. We are not here to argue with you. If you announce that you ”know” you have ALS when the doctors say otherwise, or you have not bothered to see a doctor, your thread will be closed. It is not our place to try to convince you you are wrong. Neither...

www.alsforums.com

Twitching is not a sign of ALS, clinical weakness and failure is.

To answer your question - what you describe does not line up with ALS, twitching means nothing and you are probably fixating on your speech.

The neurologist will decide if an EMG is needed after the clinical examination (physical test). If they say it is not needed, then that is a great sign. If they order one, the EMG is a tool used to help diagnose literally hundreds of issues, most of which are treatable.

I would suggest you stop googling and searching here as that won't help your anxiety at all.
Work on hydration, nutrition, sleep and exercise instead.

Let us know after you see the neurologist, and take their advice.

 

[Zach480]

Thank you so much for your reply. I will update after the appointment on 30th. I guess my biggest Hang up is the unexplainable cramping in left hand and legs if fully hydrated etc. that’s what has me so bent out of shape.

 

[Clearwater AL]

Zach, my wife is beleaguered with cramping very similar to some of your complaints. Hers is a spine issue,
she gets nerve block shots for relief, upper, then middle and then lower about every month or two.

Health Anxiety can morph onto perceived speech issues and so much more. Cramping, pain from cramping will affect your heart then add the circle of Health Anxiety. Yes, you are in the "Waiting to see the Neuro. Limbo", But…hundreds who have posted before you have had to endure the same. You're not alone.

Try hard not to Dr. Google, search the internet and surf old threads here. You’re only about a week away…
find things to do until then.

PS. I'll add this as I have so many times before... your age greatly gives you odds that you do not have A:S.
It's called a rare disease and your age frame (20s) makes even more rare. Rare of the rare.