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Vienneguy

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Joined
Mar 9, 2016
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55
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Learn about ALS
Country
FR
State
NY
City
Vienne
Hi Every body,

First of all, please apologize for my mistakes because I am french.

I am 34 years old, married with two children and live in South of France, looking for some feedbacks about my situation.

I am in a really difficult time since about 7 weeks, where I am dealing with big problems in both legs, but especially in the right one.

I have twitches all over my body but mostly in my legs from the day to the night.
I feel very painful on the arch of my feet with tingling sensations too. I feel muscular pains and weakness when I walk, but no loosing balance, no cramps, mostly a lot of disconfort and aches.

These symptoms are constant with no remission since the beginning, I have done all the usual tests (head and spinal mri, lumbar aspiration, complete blood test) and all looks fine.

Then, one month after these problems, I have done two EMG with two different neuros which came normal too. Of course, EMG didn't notice the twitches I had but I can see them on my skin, a neuro saw them and told me that it was myokymias and not fasciculations.

After that, I wasn't reassured and decided to go to an als specialised center and neuro only done a clinical exam which came normal and told me that as I have done EMG just before, he wouldn't do another emg and that I had no ALS!! But I do not trust him because I am in a constant pain when I am walking and even when I do nothing and am rested.

All neuros found hyperreflexia, no babinsky signs, no weakness, no spasticity and no amyotrophy, no pyramidal syndrome surely because it is too early. For them, pains are not related to als, it is an unusual symptom and as my emg and clinical exams are normal, it is stricly impossible to have ALS.

When I see als forum, I may have upper neuron problems (hyperreflexia, limbs problems) and lower neuro problems (twitches...) but I am not and expert.

I should be optimistic but I am really dealing with walking problems.
I am really scared actually because of these difficulties to walk, the muscular pains and my permanent spasms all over my body and when I think about it, it is really similar to als symptoms.

I would like to know if such kind of symptoms can be the beginning of als and if EMG can detect early problems like denervations, fibrillations...I saw that EMG could not detect upper neuro problems early, only lower. Am I wrong? Hope I am clear in my questions and thinkings, and thanks in advance for your answers.
 
You say you are not an expert. I agree. Your doctor is an expert.

You have been thoroughly tested. You have not got ALS.

It is time to find out why you have pain.

This website cannot help with that.
 
Hi Atsugy, I have posted on the topic dedicated to help people who feel als symptoms and would like to have some informations from experimented people like you. I am not an expert but as far as I know I am really dealing with mobility problems due to my legs with very important muscular pains. I would like to know what is going on and if this diagnosis could be missed in "early" stages. I have spasms all over my body and especially in legs, if I have well understood for als, twitching are only located in the concern area of the problem (right leg for me) that's could be a difference between my symptom and als. I would like to know if emg can detect those we can't feel. I would be grateful if someone can confirm that als twitching are always detected by emg. When I read on als diagnosis, my problems are really closed to als and that is why I feel concerned. Thanks in advance.
 
I don't know if my reply have worked but I would like to have more informations, because my pains are so closed to als.
 
Yes an EMG will detect changes before you have symptoms. The other thing you have going on is pain. Pain is not an early symptom of ALS. I can't count the number of times or ways I was asked if I had any pain. ALS effects motor neurons only. Pain is a symptom that points away from ALS. You have been seen by 2 neurologists who have given you a clean EMG so no ALS. You should be happy.
Vincent
 
I can't see any answer, is there a technical problem?
 
Sorry for double posts.

In fact my main issues actually are excruciating muscular pains in my legs with tinglings and aches in the arch of my feet, and spasms all over my body. That is why I am not really confident in those emg although I should, may be I have done them too soon.
 
Hi there-
I'm pretty sure you've read the sticky at the top of this forum "READ BEFORE POSTING" that talks about sensations such as pain and tingling not being signs of ALS. Those symptoms, in fact, point away from ALS. No one is saying what you're feeling is not real, or serious. What they're saying is that it is NOT what you fear- ALS. Your doctors, who are the people who can tell you for sure, have also said the same.

If your symptoms are affecting your day to day activities and are causing you to struggle, keep following up with your doctors to make sure you get the care you need.
 
Thanks for your answer.

The thing is that I am suffering 24 hours a day from excruciating pains in my legs, I am in a very anxious state of mind, I understand that pains are not common symptoms of als and I take it. But the pains are so strong that they avoid me to move easily, it is a severe burning pain. I am sorry to bother you about these beginner questions but your advices are really helpful for me. I conclude that pain occur in late als stage, do they? Can twitches be missed by emg? In early als stage, are there big permanent muscular tension like I experience actually, as if I run for 3 hours? Finally, are there tingling sensations in distal limb?
 
I have looked "read before posting" and I would like to know the difference between twitchings and myokimia because I have what I could describe as muscular "spasms" all over my body. Are twitchings like an earthworm which makes wave Under the skin?
 
Vienneguy, your English is fine.

This disease must be very frightening. Whatever disease you have, it sounds very painful. I think it’s important to get your disease cured, whatever it is.

I’m not a doctor, so I can’t diagnose you. But I know ALS fairly well.

First, you know that all the pain you feel all over your body is not ALS.

And the twitches, fasciculations, or myokymias: In ALS we don’t care about that, because twitching is so common to many conditions that they are not diagnostic of anything. Even healthy people twitch.

EMG is the gold standard test. We say if the EMG is clean, you don’t have ALS. OF course, EMG’s can be wrong. But you had two EMG’s from two neurologists. Both showed no ALS.

A third neurologist, this one from an ALS specialty clinic, cleared you of ALS. You say you don’t trust him because you have much pain. But ALS is not about pain.

Tingling and aches and spasms sound serious, but they are not ALS.

You worry that maybe your EMG’s were done too early. But EMG’s will show ALS before you get any symptoms. The EMG can find ALS before any symptom because, in ALS, first there is nerve damage, and then later you can see the result of that damage.

Three people with experience in ALS have agreed with three neurologists that you do not have ALS.

So first, I suggest you stop wasting your time learning about a disease you don’t have. If you want to look at diseases on the Internet, I suggest peripheral neuropathy.

Second, you asked for our opinions and you got our opinions. You don’t believe us. You don’t believe your doctors. That’s going to get in the way of getting treatment, so that’s a problem. I’m sorry you have these problems, but I am going to spend my time with people who are dying. That’s not you.
 
I can't post my reply because it tells that it took too much time but I have just done my mess quickly so there is a kind of bug
 
Thank for your answer Atsugi. I know pains is away from ALS, but a neuro noticed hyppereflexia more important on one leg than on another, I twitches from day to nigght all over my body, suffer from extreme pain on the arch of my feet and beginning of cramps in both calfs, that is why I don't trust neuros because I think that Emg have missed my twitches and also because my clinical exam has been done too early. I am very worried and I can't keep away from my mind ALS.
 
"I can't keep away from my mind ALS."

I know, Vienneguy. Every day you are here, is another day you are not fixing your pain.
 
One last thing, is there a high chance that if my symptoms are more related to suspect upper motoneuron disease, like hypperflexia, we could have seen problems on emg. In fact, at that time, I have these several problems in both legs (muscular and twitches) and I was wondering if I could relate them to LMN so that could keep away frm my mind als, or to UMN . And in this last case the only thing that I have to do is waiting for things getting better/worse to suspect UMN because I think that I am only at the beginning of the problem according to my ability to stay on my toes (with difficulties), hypperreflexia.
 
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