very confused

[tonguetwitcher]

Hi !

I will try to make myself the most clear and brief as possible (you can see my other post for more information).

In brief:

October: tongue bitting and what lookd like fasciculation (still ther today)
December MRI...nothing

January, twitching everywhere, stress Neurologist appontment. Says it looks benign, order an EMG to be sure

February: Emg with a specialist in ALS. No sign ALS, but order test for Mysthenia Gravis

Early April: Emg again with same specialist. No MG, but shw now seen fasciculation on Emge. She tols could be benign or could be ALS. She want breath test, and another EMG in August

Early MAy: Emg with the first neurologist (niot ALS specialist). Exam en EMG were normal. he doesn't need to see me gain

Friday (begin of june): Appointement with a neurologist NMD specialist. Examination normal, EMG nothing she worth mentionning to me. She said fasciculation without any other signs are meaningless. She make me sit and told me :: You have nothing neurological, you could still think you got a terminal disease buti t wont do anything good. All the time time you have on the internet looking for symptoms are loss time, you will never see that time again. get over internet and enjoy your life'' She also told me that she sees more ALS case that she would like to see but that i'm not one of those.

Tht,s where my confusion kicks in. I now EMG are subjective, could the second doctor seen something that the 2 others have dont notice ?

I have pain (burning type) in right arm for almost two months. Brushing my teeths inflict pain. Nothing was show on the emg or the nerves test.

I really dont know how to handle all that.

Thanks a lot !

 

[ShiftKicker]

I will quote your doctor here:

She said fasciculation without any other signs are meaningless. She make me sit and told me :: You have nothing neurological, you could still think you got a terminal disease buti t wont do anything good. All the time time you have on the internet looking for symptoms are loss time, you will never see that time again. get over internet and enjoy your life'' She also told me that she sees more ALS case that she would like to see but that i'm not one of those.

You are asking folk on a forum for sufferers of ALS and their caregivers to provide you answers that a VERY qualified neurologist has already provided you. In fact, she was very clear that ALS is not on the radar and that your incessant searching online was detrimental to your wellbeing.

You are asking people with ALS to help you handle the fact that a doctor has cleared you of ALS. That is not fair to them- it's actually kind of cruel.

You absolutely MUST seek proper medical care for both your physical symptoms and your anxiety about those same symptoms. You will not get the answers you need here, on an ALS forum. Please return to your doctor and tell them you need to pursue a different pathway for your diagnosis because neurological issues have been ruled out. Hopefully, if you are willing to work with a doctor and keep your mind open to other diseases, you will be able to track down just what it is that your are struggling with.

Once again, congratulations that ALS has been ruled out. That is WONDERFUL news.

 

[tonguetwitcher]

Thnaks for taking the time to answer me,But there still an ALS specialist that told me it Coul be that. I've seen 3 neurologist:

1) General neurologist: nothing on emg, normal examination
2) ALS specialised neurologist: it might be ALS
3) NMD specialist neurologist: nothing neurological

Like i'.ve said it,s a bit worrysome that an ALS has not rule out the disease. Once again could she have seen something on EMG that the other 2 have missed ?

 

[ShiftKicker]

Only way to find out is to speak to her about how she arrived at that possible conclusion.

Once again, the folks here really can't help you at this point.