Doctor told me it is not als

[rogeriopaguilar]

I went to a doctor who is specialized in neuromuscular diseases and he said after reading the emg and testing me clinically that whatever I have it is not als. Now he will try to figure out what the hell is going on with me. At first I wouldn't write this post then I thought "maybe is good to help other people". Those are my major complaints: fasciculations in all muscles of my body (including the tongue), cramps everywhere, pins and needles sensations, loss of strength specially in neck area. Even with all of that my emg just showed fasciculations and I don't have any hiperreflexia. The doctor told my loss of strength is "perceived", which means I can feel it but it is not perceived when they do strength tests. All the tests were done and I have a positive auto antibody result so it is probably something autoimmune. They will have to figure it out. I hope this can make some people calm down...

 

[skipper66]

Sorry that you are having issues at all. But, so glad to hear that you don't have ALS. Good luck in finding out what is going on with you. Hope it is something that can be treated well. Take care, Kim

 

[nebrhahe53]

Enjoy your life thank God it isnt the monster

 

[Atsugi]

Thanks for posting this. You're right, it doesn't look like ALS to me, either. You're wise to follow your doctor's advice.

 

[ECpara]

So glad you wrote back. You are right, it may help others who fear this disease with similar symptoms. Hope your doctor gets to the bottom of what ails you. My best to you!

 

[jpier]

Hi, you got positive ANA test.?

 

[rogeriopaguilar]

Yes, I have a positive ANA test (1:640)
but I still don't know why

 

[Bliz]

Thank you, it does help those like me. I too have fasciculations, for more than 7 years and I do have them in the tongue! According to many doctors (even ALS specialists), tongue fasciculations are highly specific for ALS...well I got my first one the 4 years ago...

My clinical exams remain 100% normal so I do not know.

 

[bingo29]

On this note I want to also include my experience as to help other worriers. I started twitching in both my arms and had stiffness in the webbing (between thumb and index finger) in both of my hands. This went on for two weeks which prompted me to google my symptoms and ALS popped up. I totally went off the deep end into a depression and went to my GP who said he say some atrophy in my left hand and that it could be carpal tunnel, but he would refer me to a neuro. I saw my neuro at Penn State, who's also a professor, and she gave me a clinical which was clean and scheduled me an EMG and MRI of my brain and cervical spine. All of my tests came back clean, my neuro flat said "you do not have als" but after the appointment my symptoms progressively got worse... meaning my twitiching spread to the arches of my feet, thighs, and what I perceived as weakness in my shoulders and tongue. So.... once again I totally forgot about my clean tests and diagnosed from my neuro and fell into another depression. I recently saw the top MND specialist at Penn State for a second opinion and she did another clinical and said YOU DO NOT HAVE ALS and that internet searching is ridiculous.

I'm to the point where I'm at peace with whatever happens (as my symptoms are still occuring) and that I need to quit driving my wife and family nuts. Life is too precious to sit around googling, and listening to random people instead of your neuros. Please continue to live your lives and respect the wonderful and generous folks on this forum who take the time out of their lives to answer your questions.

The community can also take this post as an apology for jumping the gun and posting on your forum before even seeing a professional. Thank you all and godspeed.

 

[MaxEidswick]

>On this note I want to also include my experience as to help other worriers.

now this post should be a sticky!