What next?

[Vienneguy]

Hi everyone

I come back on the DIHALS because my symptoms are becoming worse day after day.

I had to tell you about my TST, (very painful test by the way), which came back normal.

Since 1 month now, I am suffering from constant twitchings (plus bodywide twitchings since 8 months) in boths calves day and night every second and I can't sleep. My right leg is completely stiff, walking is a torture.

I have done an emg which showed fasciculations in my calves and when the neuro noticed them, he immediately retired the needle and finished the exam without telling what kind of fasciculations it was.

I am becoming mad of this, and now, as fasciculations have been noticed, I would like to know if there are differences between malign and benign fasciculations.

What are the other paremeters they use to point away als with the emg. I need help, I feel lost. I am struggling with increasing problems since 8 months now and walking is becoming my main issue.

I had cramps in both my calves last night, I need your support to tell me what to do, I am off work now due to my pains in my legs.

Thanks,

Vienneguy

 

[affected]

No really you were answered already. Go and read your last thread again, I just took the time to do so.

TWITCHING and CRAMPS MEAN NOTHING. Of course there is a difference - if they are ALS fasciculations you would not be able to move by now and you would not be twitching either.

Your tests are all normal, you have no ALS symptoms and 51 posts here.

I'm so sorry for what you are going through, but honestly we can't keep saying the same things over and over, we are caring for the terminally ill. Good luck.

 

[Vienneguy]

Tillie,

Thanks for your care. I apologize for my numerous posts, but I can't trust my neuros who told me before there was nothing, now they say bfs, tomorrow maybe something else? I have to see the best als center in my country next month and I hope they can find a clue because I can't live like this anymore without knowing what is going on.

I have seen so many testimonies of people being diagnosed years after their first symptoms that I know there is something serious going on. Even if, in fact, I should have seen partial/total paralysis of my legs during that amount of time, I admit it but why am I twitching like crazy in my legs for one month now and bodywide sporadic twitchings for 8 months with severe issue to walk. I feel so nervous about the fact that I don't recognise my body.

That is why I am asking you these questions thanks to your solid experience in such disease, my aim is not to spoil the forum but to understand, believe me I would like to do something else by now than being on the forum and tell about my personal life, especially in front of terminaly ill people who I respect so much.

Again sorry,

Francis

 

[Nikki J]

TST? Is that what I call TMS ( transcranial magnetic stimulation)? I think you had said you were having that? That is a test not usually done here in the US. I have only had one for research purposes. I highly doubt that whomever you refer to as being diagnosed after a couple of years had one and since those people usually have upper motor neuron signs seen by their neuros ( not told they were fine) and your TMS would have shown umn dysfunction if you had any this is NOT you.

Fasciculations alone on emg mean nothing. That is considered a normal variant. Did you ever go to the doctor with an open mind and ask to seek the cause of your symptoms instead of directing things to ALS? What happened if so? If not, why not?

 

[Vienneguy]

Nikki J,

Yes, I meant TMS or triple stimulation transmagnetic which came back normal.

I am in agony these days with my legs, again I don't want to diagnose myself but every test came back negative, except emg and my personnal knowledge of my body : I can't do normal tasks anymore.

I am sorry but I am suffering from constant twitchings and excruciating pains in my legs which make my walk extremely difficult.

I have read the stickies and nothing else come into my mind except als.

I think that there is a deep misunderstanding between what I feel and what neuros find on the exam.

Please, I need help, find a solution, I know that you are not doctors, but I am alone and I am "fighting" against doctors who are not completely helpful.

I must precise one thing, I am depressed by my pains and not the contrary, there is something abnormal, I don't wont to make a movie, I am in true reality where I think there is a neurological problem and where some abnormalities like emg confort me in my worries. I don't want to fight against you, I need help to find what is going on, please.

I don't know if some of you would be kind and send me a private message but it a very very difficult situation where I have tried to find with doctors a solution, but there is nothing.

Sorry for the negativity, I know that numerous PALS and others can read this and I apologise, but it is too much for me.

 

[WendyWooG]

I am sorry you are having so much distress but you are asking for help from people who can't provide it. If your doctors can't find clinical symptoms and your emg did not show problems then you don't have ALS. The EMG looks for much more than just fascisculations. The people here can only help with ALS because that is what they are suffering through. You have had some very patient people on here explain this to you but I don't think you are taking full notice of what they are saying. Making them keep repeating this is unkind.

You say in your post that nothing else comes into your mind except ALS that is part of the problem. It is very easy to blame everything you feel on what you think it might be. This means you are not working properly with your doctors. This could be preventing you from finding a correct diagnosis. You need to keep asking doctors what the problems could be rather than telling them you think it's ALS.

I truly hope that you find a solution to your problems by working with your doctors.

Wendy

 

[Vienneguy]

Thanks very much Wendy for your support, I am in a waiting room, a nutshell where it is extremely difficult to find the clue. I really appreciate all the support and answers the members gave me, it is a big help, believe me.

I think you point the main problem between me and the doctors : I think it is als, but at no time I force them in the diagnosis.

When I meet them, I talk of the possibility of...then they tell me : No no way, it is not als. I agree with them and ask them, what else can it be and nobody of them have an answer. That is why I am doubting a lot, especially with such symptoms.

I have met about 10 different neuros, have done 8 emg, 10 clinical exams maybe more. I am wasting a precious time, and believe me, I try to keep my day to day life with my 2 daughters, my wife, my work, my house but it is becoming impossible.

I complain, sorry for that, I will have this last test in October, and then if ALS is defintely negative, I will continue to find other possibilities.

Again, thanks a lot and I am sorry to post on the forum, I don't want to be a spoiler in anyway and I know how frustrating it can be for PALS and CALS to read my posts.

If anybody have an idea to tell me what to do, I take it with pleasure. My mind is a mess with all that stuff...

 

[scaredwifetx]

You say you have had 10 neuros tell you don't have ALS but you still want to think you have it? That's a clear sign there is something wrong with you but its NOT ALS.

As anyone that is dealing with this tragic disease can tell you. You would be in far worse shape by now. We were dealt a very big blow with diagnosis. We would love to be told our loved ones dont have ALS. To be honest it is very upsetting to see people like you wanting to hear they have it

You say you dont trust the doctor's and yet we tell you the same thing. You don't have ALS.

You have children, a wife and a life ALS free. If you have learned anything by being here were you don't belong, it should be that we are desperate and clinging to the hope of a cure.

Get help, visit a anxiety thread, love your children and honor those of us here dealing with a terminal and horrid disease. The best and most honorable thing you can do for us and yourself is to quit spending time where you don't belong. You make the choice to live your life and it starts by not logging on here.

We dont want you here. You might not understand but believe me when I say NO ONE should have to be here. You ask us what you should do?

See a counselor and talk to someone. Obviously, there is something very wrong if you want to believe you have a terminal disease.

I am saying a prayer for you right now.

 

[starente15]

Please discuss your anxiety with your doctor as well as your concern over ongoing symptoms.

The folks here are terminally ill or caring for those who are and cannot provide support to everyone who is worried about ALS. Yes, it's a terrible disease, but most who come here seeking advice do not have it. Lucky them.

 

[Vienneguy]

Okay,

However, I know perfectly what a terminal disease is because I am Leukemia free and even if it is only a cancer, it is something serious but it belongs to the past now a long time ago.

Now, there is a problem in front of me and I truly hope I will find the solution, anyway I stop to speak to myself, in the same time, I am actually in the DIHALS which maybe is not an appropriate thread for this forum.

Thanks,

My pray to all of you.

 

[Atsugi]

Vienneguy, NO THREAD in this forum is appropriate for you.

You could be finding out what you have...but, instead, you are here, where we specialize in what you DON'T have.
You could be fixing your problem...but, instead, you are here, talking about something you don't have.
You waste your time. You insult us by not believing us.
Go.

 

[Vienneguy]

I believe you, at no moment I have told you you were wrong on all the post I have made, I think I am not the only one on the DIHALS section who simply ask questions. I have definitely understood the concept now, you can be sure of this. You can close the thread and delete my previous posts if it is possible.

 

[affected]

When I meet them, I talk of the possibility of...then they tell me : No no way, it is not als ... snip ...I have met about 10 different neuros, have done 8 emg, 10 clinical exams maybe more.

I cannot believe this thread has been allowed to continue :neutral::???:

Please mods can you stop this once and for all, this is going around in the same circle as every other time.

 

[GregK]

Mod note: closing thread per OP.