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Dpm00

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Apr 21, 2013
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Learn about ALS
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Ny
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New York
**I've decided to start my own thread: I've answered under another thread, however not sure if pple would be able to see it, as it was from awhile ago: sorry for the double post, I'm not savvy on forum dedicate.

Dear community

Thank you for reading my post. I write you today in hopes of getting a clearer understanding of my symptoms and ALS. I understand you guys are not Dr's, however as I read through the threads it individuals living with ALS seem to have a greater understanding than professionals, at times. After all, it is you who feel the weight of this terrible disease. A little about myself: I'm a 36 yr old male, I'm active in the gym (lifting 5 days weekly)and play hockey a few times a week. My muscles are often sore, at times feel as though they are about to cramp, but dont and yes, I twitch. A lot. I've never given it much thought until I realized how often it occurred. As I sit now, I can feel all types, the jerky type, bubbling one ( kinda feels like a fart under the skin) however most of the time they pop. Is there any spacific type associated? Today they seem more concentrated on left calve and around that general area, just above the Achilles' tendon, although I also feel ones popping off in my right shoulder, both thigh, buttocks and calve. most of the time, they're spread out around my body. Naturally I looked up my twitching symptoms in google and of course regret it! I've read up on BFS, and sounds as though my symptoms point in that direction, however the ALS possibility continues to loom. This week I started twitching on my tongue. That's a new one. I now feel like my mouth gets tired eating. I don't slur, but I'll find myself thinking I will and in mid sentence ill stumble or sound as though I slurred. Physically, I do feel as though I've lost a step in hockey, my hands feel a bit dumb, but I'm able to button my shirt, lift heavy objects, walk in my toes, jump, and walk on heels... Pretty much, done all the self hypochondriac tests one would administer on themselves when stressed about illness. Ive even had my wife and others take these tests. Today, at hockey i asked my friend to stand on his tippy toes one foot at a time so that I could compare my own performance in balance. I never explained to him why, just told him I was messing with him and wanted to see him hope about like a crazy person.

I have a fair amount of muscle on me is it possible that the twitching is happening in smaller areas or muscles as I compensate with my other muscles around it? I've read clinical weakness comes before twitching, but I've also read individuals with ALS who experienced body wide twitching w/o really feel weak. At this point I do not know what to believe. I went to see an 80 yr old Italian dr earlier this week, I told him about my twitching and he proceeded to educate me on diabetes, high blood pressure and cholesterol, never really addressing my concern. When I reminded him why I was there and my fear of ALS, he said, "don't worry, you don't have it". He was a sweet man with kind bedside manner but I insisted on a simple reflex test. He hit me a few times with the hammer, commented my right leg was heavier than my left. This freaked me out, I asked him what did the reflex test show you, his answer, "nothing, you're fine". I said, you sure, are you just saying that? and in Italian he said, I'm not bullshitting you, go home and eat a plate of pasta. I really want to believe him, behind those kind old eyes I want to believe he was being truthful, and not thinking statistically, I'm too young, or I was just over anxious.

I have an apt scheduled for a neurologist this coming week. I've done so much research that I've exhausted my head in believing I have an illness, even against my better judgement. But with every twitch there is a reminder of what I may have. I know it can't be lack of calcium, I eat tums like candy all day bc of my GERD ( can't have that plate of pasta sadly) which I take meds for, however the twitch its not a common side effect.

Like I've said, I've read many posts by ALS fighters, friends, family, caretakers and people like me, alarmed, worried, and stressed. We've all asked the same questions, raised many of the same concerns, I've sworn I wouldn't need to reach out, here I am. Thank you for hearing me out, writing this has made me feel a little better. I'm not sure how you've perceived my tone, but I can say, I'm bruised terribly by fear and anxiety.

Sincerely,
Dpm
 
Hello Dpm

Go to your neuro appt. It will make you feel better. He/She will do am exam and ask questions. You will ask questions and I am sure the dr will tell you that all is well. BFS can be annoying but it can be lived with. If you can do all the things you say you do I would guess that there is no als. Everyone twitches and stumbles over words from time to time.

You could be lacking in your vitamin level because of your GERD. Have a few blood tests done. Stress and fear will cause the twitching to become worse so try to relax and stop testing yourself. Onlly a dr can do the right kind of testing and self testing will only cause more anxiety.

You seem to be a pretty smart guy and I am sure everything will turn out fine. Good luck with your dr appt. Peace.

I answered with this on the other post you did. Try to stick with one post. This one is fine. It makes it easier to answer and not have to bounce around trying to keep up especially for those who have trouble typing.
 
Hi Vicki

Yes. Stress most certainly does add an enormous amount of weight in form of anxiety. I keep telling myself if I'm able to continue working out and playing hockey, I'm fine. Easier to momentarily feel that, another to believe it 24/7. Again, as I mentioned in our previous conversation on the other thread, I do appreciate your ear and time in which you have replied. I guess i need to wait and see the doc, so I'll sleep until Tuesday, as Monday stands in the way.

Kindest regards
Dpm
 
Hi there, and welcome to these forums.

Look, it's okay to be afraid. It's okay to break down. It's okay to worry. Stress and anxiety can manifest things in your body that you never imagined possible. I'm not saying that's what's happening, but try to keep in mind that everything could be exaggerated by what you're feeling emotionally right now. The best thing that you can do is wait and live as normally as possible until you see your Neurologist. Keep in mind that your symptoms might be caused by many things. Let your Doctors do their job and try to stay focused on everything but your symptoms until you talk to them.

I may be incorrect in some way and if I am, I don't mean to misguide you or give you ill advice. ALS is a very complicated and rare disease. If you are worried about any of these things you should get an appointment with GP or your Neurologist.



Best regards,



NH
 
Thank You NH

I've spent way too much time on the Internet, I'll relax now for the evening. Appreciate your reply

Dpm
 
I was able to schedule an earlier apt to see a neuro for this evening. I know there's no garuntee to receive a straighforth answer however hope to have something a bit more concrete than my own self diagnosis.

Thanks
DPM
 
Let us know what happens. Good luck.
 
Will do. Thank you.
 
Update: had a visit yesterday with a neurologist yesterday. I sat in his office and explained my symptoms along w/ worries. After speaking he answered with, " I'm going to say this right off the bat, your twitching in benign" that was just about enough for me. He requested to examine me regardless. He administered a reflex test , cked my eyes, mouth, all limb strength tests, had me walk, and finally looked my body over with his eyes. At conclusion he reiterated, that I was ok and didn't show any sign of ALS or even ALS. He said he'd be willing to ck my blood work or EMG, however not sure if he mentioned this just to place my mind at ease as he could probably tell that I was a bit stressed. We left it open ended a he gave me a prescription to have my blood drawn, should I opt for it. I feel a lot better having seen him. My shoulders still feel fatigued, however it is both shoulders, not one, so not worth the stress at this point. I thank you for listening and reaching out with your advise. It's greatly appreciated.

Warmest regards
Dpm
 
Well you know it is not als. Good news. You may have some sort of problem, only a dr can tell. The blood may show a vitamin problem which is treatable. Go relax and be happy. I am happy for you.
 
You see?

That's good news for you. And, you were worrying like crazy for no reason at all.
That's why I would dare say that almost 99% of those who come to this DIHALS sub-forum with "muscle twitching problems", certainly do not have ALS but mostly stress and anxiety.

Enjoy your day.


NH
 
Thank you NH. Yes, stress really plays a big roll. Perhaps there is something wrong, just know its not ALS or MS. I appreciate your time to write and wish you well. Thank you again..and again.

Best regards

DPM
 
Meant to write, thank you NH and Vicki.. You're the best .
 
your symptoms sound like mine. im 25. have you ever taken NOxplode? im convinced that crap started all my twitches and muscle issues. my doctors dont believe i have als at this point.
 
@Caliburn,

If your Doctors and Neuros (the experts on the field) do not think you have ALS at this point, why cast doubts about what they say?
 
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