sincere question and story

[Walle1996]

hello im a 21 year old male who was been having some weird symptoms and really would like to ask a question, i really didnt want to post here because having read other threads i know how much it annoys you when anxious people ask questions but I promise if im told that my symptoms dont sound like ALS i wont bother you anymore...

so basically around august last year so like 6 months ago i started twitching in my legs, very subtle at first just an odd twitch here or there but after i read about als i freaked out and the twitching moved all over my body, so

i went to a general neuro who did a general reflex test and strength and said you are ok, so i relaxed for a couple of months even though twitching continued,

about 3 months after seeing that neuro i started getting weird symptoms, when speaking my speech felt off, not exactly slurred but somehow i couldnt articulate properly, nobody notices it though, then my legs started feeling really weird when walking,

i have never fell or anything like that and i can still walk on toes and heels and hop on myn toes but my legs feel really weird while walking, i guess the best way to explain it would be that i really need to focus to keep my balance and step properly instead of it being automatic, so

I went to a ALS specialist who said she was 100% sure I didnt have ALS and the twitching disappeared for a few days and I tried to calm myself but

lately i have been getting really bizarre symptoms which really worry me on top of the ones i already had and keep having,

about 1 month ago, my calves started burning very bad while walking, like when you lift weights and the muscle burns, i get that same pain in my calves while walking a route i walked everyday for 3 years without problem, every time i walk it now my calves burn and hurt a lot, and also when speaking sometimes the muscles in my face used for speaking will burn really bad, that has only happened a couple of times though...

so im thinking about going to another als specialist...

what do you think about those symptoms? benign? and

also a question i wanted to ask and i hope to get a sincere answer... i have read of other members who just had twitching for a couple of years and got diagnosed... i was really relieves because i read 2 ALS specialists on the aboutbfs forums said that if after 6 months twitching no weakness you didnt have als, and

i am a bodybuilder so i constantly workout and my strength has actually increased a lot and ive have gained about 30 pounds of muscle in these 6 months so i thought i was in the clear, but after reading some stories where people twitched before weakness im really scared and concerned... so honest question... can it really begin with twitching as only symptom for sone months? thanks for reading...

 

[Walle1996]

by the way forgot to mention, yes ive read the stickies, and another 2 symptoms which trouble me, after working out my muscles get really really sore sometimes, before twitching they never got sore even with intense workouts, is that something anybody can relate to? and sometimes my fingers and wrist hurt and feel really stiff when using a lot of force and sometimes i get really freaky twitches which make the fingers flick very very fast on their own.. thanks

 

[starente15]

It doesn't sound like ALS and you've been told by two specialists. Have you sought help for anxiety over this?

 

[Walle1996]

hi actually only one was ALS specialist other one was MS specialist and yes im seeing a psychologist and getting cognitive behavioral therapy but its so hard to see results when you are not 100% sure your condition is caused by anxuety

 

[Vincent]

There is something in your 2nd post that got my attention; "when I work out". When you can't do some part of your work out because a muscle will not contract, then you need to worry, and not before. Get the anxiety under control.
Vincent

 

[Walle1996]

yes vincent as of right now my strength is better than ever, i can leg press 900 pounds, bench 250 pounds, shoulder press 80 pounds dumbells, do 8 pullups, however that all doesnt comfort me because i have read stories of other memberd here who say twitching came first with no weakness like a premonition and thats what scares me, i even read about a member who said her pals had atrophy but no weakness and that scares me more because i sometimes look at my hands and see dents... however you have answered to me and said my symptoms dont sound like ALS and you know way better than me so i think the next step should be anxiety medication instead of another neuro... thanks a lot starente and vincent... please if any other member can give me his opinion and particularily if any member can answer my question about twitching and no weakness i would really appreciate that dearly... thank everybody a lot sincerely i will look into anxiety if you think that is what this is

 

[Atsugi]

"I went to a ALS specialist who said she was 100% sure I didnt have ALS"

That should have been the end of it.

 

[Walle1996]

i realize you 3 are some of the most experienced members here and the 3 have told me that my symptoms at this point dont sound like ALS at all so i understand that... just a last question... after readingmore on the forums i understand why this would be a question you wouldnt want to answer but is it really possible to twitch and still be able to break your lifting records in the gym? for example somebody who was bulbar and twitches all over body would still be stronger than ever in the rest of his body? i really wish you could answer that.. but if you dont want to i completely understand you and you have helped me and told me what i wanted to hear so i wont post anymore unless i have something to update so people who have symptoms similar know where this all ends thanks for everything

 

[codyclan]

Sure it's possible to twitch and still break your lifting records if you DON'T have ALS. Twitching means nothing, as you have been told repeatedly. It is not necessarily symptomatic of anything!!! Someone who has Bulbar-onset ALS would NOT be breaking weight lifting records. You have been told repeatedly by doctors and folks here that you absolutely do not have ALS. My husband is bulbar onset, after diagnosis he continued to exercise for a period of time, but his performance declined steadily--it NEVER, EVER improved.
It's time for you to move on!
Tracy

 

[Walle1996]

Thanks, codyclan I understand, thank you for answering

 

[Walle1996]

ok.. today it was worse than ever my calves hurt so much when walking home i had to stop several times... I exercised them today too and could lift the whole rack in calf raise.. so no way i have weakness...

the only thing im scare about is what if its other muscle thats weak and calves are compensating causing the pain...

i know you guys think its not related so ill follow up with doc..

Ive been reading the forums a bit more now, i dont want to be rude or misinterpreted but there are people who very clearly have ALS symptoms an you tell them the odds of als are low...

i dont want to scare anybody and out of respect i wont give specifics but i read about a member who has weakness im dominant arm (in 70% of limb onset on upper limbs it start on dominant side so strong indicator) and hyperreflexia so lmn and umn signs in that region and swallow problems and pesudobulbar effect so lmn and umn signs in 2 regions.... isnt that like almost definite als in el escorial rating? i mean that makes the odds 99% of als an you are saying its not...

i understand maybe for example my symptoms are nonspecific at the moment so i have no reason to worry so in my case your straightforward approach is ok... but how can you give false hope like that?

I understan the trouble many of you go trough to answering and i deeply value it and having received answers in my case but i think you should be a bit more sincere..

i hope i dont get misinterpreted or come across as rude, i dont expect anybody to answer the question about my symptoms or this... but whats the point of having a do i have als forums if you get angry when people ask questions or when someone who would be considered very probable als on el escorial criteria is told no als...

im not telling you how to run your site and im aware im in no place to make suggestions or complain but seriously... dont expect anybody to answer you can delete this post if you want...

i wont post here anymore because unless i have something paralyzed or a dirty emg which im hoping will never ever happen i know your answer will be no als so no point... just wanted to say that before leaving... hope that doesnt come across as rude i deeply value your answers and wisdom and since ive gotten my answers its time to leave as codyclan says...

thanks for everything and i hope i dont have to return (in a good sense) take care

 

[starente15]

Your calves hurt after exercising? Sounds pretty common, especially when lifting heavy weight. I'm not sure what led you to believe you might have ALS (other than Google), but you've been told you don't have it. This forum focuses only on that topic so we won't be useful in trying to diagnose whatever else might be going on.

 

[Nikki J]

First you clearly do not understand El Escorial criteria. Probable ALS requires diagnostic EMG changes and upper motor neuron findings on clinical exam in two of three regions ( bulbar , upper limbs and lower). It is not symptoms but clinical findings No one in DIHALS has reported this

I am not 100 percent sure to whom you refer but if the person is who I suspect no one said not ALS but rather until all tests are in it could be other things which is what the doctor said too.

Your neuro said 100 percent not ALS which means you need to look elsewhere to explain your symptoms

 

[Atsugi]

Thanks for your comments, Walle. We take them all seriously.

My own experience with ALS was quite short--my wife lasted nine months from first symptom until she died, totally locked in her unresponsive body, staring at the ceiling while we put drops in her eyes because she couldn't blink. During that time, I found that most doctors and nearly all nurses really don't understand ALS at all. So for the next six years, I've read books and websites and posts and studied what PALS have to say about their personal experiences with ALS. Of the moderators, I might be the least knowledgeable.

So forgive me for asking, but exactly with what education and experience did you determine that "there are people who very clearly have ALS symptoms an you tell them the odds of als are low"? I'd like you to be specific on which persons you are certain have ALS that we gave "false hope" to. We can learn from those instances, if there are any.

On this website, we have almost always had several medical professionals, including doctors, who have extensive first-hand experience with ALS. This year, we are more blessed than ever and have a stronger bench than ever before. But if you have acquired the knowledge and experience to second-guess our people. I'd love to discuss specific cases with you privately.

Forgive me if I'm not inviting. Our mission is to provide substantial support for PALS and CALS. There are other sites at which non-ALS people can commiserate over their symptoms.

 

[lgelb]

Walle, there are many muscle complaints that can arise with heavy lifting such as you do. Close your screen and go work on your diet, hydration, stress, sleep, stretching and bodywork like Pilates, Tai Chi, ballet that elongates rather than fatiguing muscles.

Best,
Laurie