Old 12-23-2018, 05:01 AM #1 (permalink)
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Unhappy Long time without diagnosis

Hi everybody.

I am man 29.
My story started a year ago. Something around 01.18
I started to feel strange feeling in upper side of my right feet. It is difficult to describe. Like sock was tight (without sock).
I visited doctor, he recommended me antidepressants, (I took them until Spring without any effect on my feet).
In summer I started feel twitching (fascicuations) in my calf muscle on right leg, then in two weeks in left too then in all body (of course I was nervous about it).
I visited doctor, he found higher symmetrical reflexes on knees and he send me on EMG, which was clear.
In a 1.5 month I felt that was hard to walk. I did not feel clinical weakness, but my right leg become tired much earlier then left. Sometimes I could walk several km, sometimes it tired in 400m. Also I felt liight pain in problem muscle.
I visited doctor again, he send me again on EMG(in a month after first) - in this time it was not full clear, I had fibrillations in problem muscle(in problem leg) amplitude +80%, duration +13%, and no in other muscles on same leg, single fasciculations in some muscles of the body. Result was like: chronic light denervation-reinervation process in right leg, no ALS.

After that in one week on right leg I can not feel that I tired any more, just light feeling.
But I started started feel spasms in legs, rarely convulsions and activity most time on most muscles on my legs.

EMG again(in 2 month after second). In that day I felt better - less twitching. Result: No fibrillations and fasciculation's in any muscles (strange... I can feel it most time and see in morning and evening on legs). Duration in problem muscle increased to +29% which was really high, amplitude +60. Again result: no ALS, reinnervation in right leg.

What I have now: Fasciculations in legs most time (small movements in muscles), twitching in other parts of body (hands, back), small vibration in legs in eyes. Problem with sleeping (It is 4 months as I wake up after 3-4 hours of sleep and can not sleep again). I read people with ALS have problem with sleep.
I do not have clinical weakness.
Minor pain in some muscles.
Spasms in legs. Rarely (one in 1-2 days) cramps.
Also my right leg in ancle on 1cm thinner then left.
It is a month as some days I feel numbness on the ends of my fingers.

It is a big problem find good ALS doctor in my city, and most doctors here do not really care. (may be because of my age)

I could believe it is BFS if no changes on emg...
Based on results on EMG doctor does not know what is it.

Can it be early stage of ALS?
Or can you recommend me something?

Thank you for reply.
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Old 12-23-2018, 08:22 AM #2 (permalink)
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Default Re: Long time without diagnosis

You have had 3 EMG’s with no diagnosis. You have no weakness. I suggest you start Googling other maladies. Perhaps some on this site can suggest things for you to Google before they close this thread. Good luck on your search and Merry Xmas.
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Old 12-25-2018, 07:50 AM #3 (permalink)
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Default Re: Long time without diagnosis

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Originally Posted by dldugan View Post
You have had 3 EMG’s with no diagnosis. You have no weakness. I suggest you start Googling other maladies. Perhaps some on this site can suggest things for you to Google before they close this thread. Good luck on your search and Merry Xmas.
Merry Christmas.
I started feel weakness in right leg again and in my abdominal muscles (not sure I translated correctly... on stomach) and opposite side on back.
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Old 12-26-2018, 12:53 AM #4 (permalink)
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Default Re: Long time without diagnosis

Again, this could be anything or nothing.

If you feel the doctors where you are cannot give you a definitive diagnosis (and are willing to accept "good health" as a possibility), you might visit a neuromuscular center with different expertise.

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Old 01-01-2019, 10:40 AM #5 (permalink)
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Old 01-01-2019, 03:23 PM #6 (permalink)
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Default Re: Long time without diagnosis

Twitching means nothing in the absence of other clinical findings which you have not reported and that twitching was not even very dramatic. ( even if it was my answer would be the same)
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Old 01-01-2019, 05:10 PM #7 (permalink)
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Default Re: Long time without diagnosis

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Twitching means nothing in the absence of other clinical findings which you have not reported and that twitching was not even very dramatic. ( even if it was my answer would be the same)
I can get up on your toes 45 times by left and right leg(this is limit as always was), but after that I feel weaknes in right gastronemius. Also minor pain only in right leg as my right leg got tired twice more than left.
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Old 01-01-2019, 06:04 PM #8 (permalink)
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Default Re: Long time without diagnosis

Being able to do what you did before and feeling muscle fatigue after, is hardly an ALS symptom.

If the antidepressant is not helping (but you may have stopped it already?), you might discuss tapering off it with your doctor as some can interfere with sleep, which in turn can make twitching and pains worse. Anxiety can degrade sleep as well, so it's worth considering meditation, reading etc. before bed.

Therapeutic massage and a stretching program may be worth pursuing as well. Sometimes it's worth putting a pause on "what is it?" in favor of "how can I feel better?"

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Old 01-01-2019, 06:26 PM #9 (permalink)
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Default Re: Long time without diagnosis

A person with lower leg involvement from ALS can’t get up on their toes at all. The muscle doesn’t “feel” weak, it just doesn’t work.

Twitching is common, nonspecific, and meaningless.

You’ve had 3 clean EMGs. You don’t have ALS. Time to let go.

Please, no more questions and no more videos. Enjoy your good health and celebrate the fact you don’t have ALS.
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Old 01-01-2019, 06:33 PM #10 (permalink)
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Old 01-12-2019, 01:47 PM #11 (permalink)
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Default Re: Long time without diagnosis

Wanted to up my topic.
May be my expirience will help somebody in case I have any diagnosis.

Just visited my doctor.
He can not see progression except more fasciculations.
Recommended me some medicines for neuro system and against fascic.
In this weeks I felt one day my right hand work not good, bat after few days I had regression and now by right hand feels almost like left. But gets tired earlier and can not make fast moovements of finger like on left hand.
After that I had pain on skin(on weak part of hand) like chemical burn.
Now same fascics in all body, in eyes, most more in legs, some weakness and spasms in all muscles in legs.
Vertigo and strange feeling like my brain compressed.
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Old 01-12-2019, 03:55 PM #12 (permalink)
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Default Re: Long time without diagnosis

You are letting anxiety consume you. Please stop. If you have no weakness OR if you have a normal EMG, you don't have ALS.
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Old 01-12-2019, 04:56 PM #13 (permalink)
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Default Re: Long time without diagnosis

You should be aware that whatever drugs you are given for fascics and "for neuro system" [?] probably have their own side effects and could make things worse instead of better. If you do not need them to function, you may be better off without. Of course, you should discuss with your physician if/as you consider a change, as some are dangerous to discontinue too abruptly.

There are many things apart from drugs that could make you feel better, from walking to massage to being with friends. Working on your sleep is another example. Why would you want to hold your young life hostage to a disease that you do not have?

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Old 01-13-2019, 03:32 AM #14 (permalink)
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Default Re: Long time without diagnosis

I know about their own side effects
Unfortunatelly I can not walking and being with friends, as it hard for me walk to work every day, even go to shop for me problem, it makes me generally tired sometimes.

I have some disease, I can not say it ALS, but it makes my life hard.
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Old 01-13-2019, 02:55 PM #15 (permalink)
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Default Re: Long time without diagnosis

Manfree, set yourself free... from this Forum

As KarenNWendyn wrote...

"You’ve had 3 clean EMGs. You don’t have ALS. Time to let go."

She is a doctor.

This is an ALS forum. You are finished here. Find another forum
that better suits your situation.
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