Sick of No Answers

[Al]

So people you have heard from " the best of the best" so believe it when they say no ALS. They know of what they speak.

AL

 

[NotKnowingSucks]

Just started testosterone treatment today (the Androgell). My endocrinologist is sending me in for an MRI of the pituitary gland, she thinks my levels are very low for FSH and LH along with my low testosterone. I guess I am having a lot of imaging tests run to find possible other causes, would be a great day to find out I have something treatable. My left calf muscles keeps cramping up which reminds me of whats going on (which could be anything at this time). I understand ALS needs to involve upper and lower to be declared as diagnosed with ALS but to have any stages etc from an EMG machine, muscle biopsy is just a drawn out form of the same disease. Sorry everyone but I am scared of what they will tell me on Thursday. I am hoping for the best of course.

I have jaw jerks, leg jerks, muscles twitching on me all day long. When i swallow I feel it stressing in the back of my neck (best way to explain it). All of this on the left side. Only pain i feel is the muscles cramps and the pressure on my spine pressure points when i sit up for too long (especially my 5th thoracic).

Thanks for being supportive everyone, very much appreciated.

 

[NotKnowingSucks]

Hello Everyone,

I just had my EMG today and the neurologist who did it told me I had a clean EMG, completely normal on all accounts. Obviously I am very happy with this news.
I still have multiple symptoms, weakness on the left side, swallowing issues, jaw weakness, neck weakness I can hardly hold my neck up, twitching throughout my body (especially in my eye lids).

Thanks god it was clean, I feel very good about this. She tested every muscles for any onset I could possibly have had and she has referred people to ALS specialists in the past for second opinions so she knows what to listen for and what to look for as well.

I am now going to find out what is truly wrong with me that could be causing these symptoms and not focus on ALS. I am seeing a psychiatrist and a very good GP to try and start helping me figure out what the root cause of all this is.

I am also going to find out how I can become more involved in the research or ALS and help find a cure. No one should every have to live with this fear ever. If one develops ALS we need to have a treatment that stops the progression or reverses it.

I hope you are all doing as well as you can today, I am going to stay on here and talk with you guys from time to time if you don't mind.

3 EMG's completed
1st on 1/15/2006 (normal)
2nd on 6/21/2006 (normal)
3rd on 12/1/11 (normal)

I would say I am clear.

Thanks to all of you, you are all wonderful people and I will be fighting for you.

 

[TedH5]

Great news. You are free and clear of ALS as we have been telling you. Good luck and I hope you figure out what is going on. Please do not think about ALS anymore.

 

[trfogey]

Congratulations on your good news. As one of our senior members says, it's not ALS until it can't be anything else. Here's hoping that they find a treatable "something else" for you very soon.

 

[notme]

Ditto on trfogey's post. Don't stop looking for answers--there are a LOT of things it could be--and many of them benign. Good luck to you. We do know our own bodies best--but at least the worst has been ruled out with clear EMGs.

Good luck to you