Recent content by CB1977

I just want to thank everyone for your support, information, and patience over the last 2 years. I first came here is Sept 2008, led here by google like many. I have had a ton of testing in the last year including a muscle biopsy that came back abnormal (but didn't show signs MND, possibly a...

Hello xtczero- Many of the symptoms that you describe as well as your experience and the doctors responses seem similar to my own. I am also the same age as you, and was previously very active like you. I have had symptoms for 2 years including the sudden horse voice upon exertion. I was even...

Hello sean, That's good news about the EMG. I have had issues for over 2 years now and have been seeing doctors for 18 months. I just had a fourth emg, my 2nd at CC. My first experience there was not a good one. It was very similar to yours. I complained and had a new Dr assigned to me and...

I am looking into this after having progressive symptoms for over 2 years and having 4 clean EMG's over the last 18 months. I have been sent to an endocrinologist. Hopefully this will not be a dead end. I have most of the symptoms you mentioned. Good luck to you, dont give up the search to...

I was tested back in Oct with a blood test. It came back negative. I decided to go ont he gluten free diet anyway because I was told that the blood test often does not show a posative reading and the biopsy of the small intestine is the only way to really tell. I think the weight lost is...

Dont switch to gluten free until you get tested. I was told it can cause a false negative. You can get a pretty easy blood test for this but it is not super reliable, a lot of false negative. The biopsy is what really will tell them if you have it. I hope one of us finds out what is causing...

Hello Everyone and Happy New Year. I wanted to post an update for anyone that might be following my situation bc it is similar to their own. Its been since late May of 2009 since I have had an EMG. I just completed an EMG at ClevClinic last week. I still have many of my symptoms. A few have...

Hello Lulapaul78, My symptoms did not improve after being on the antiviral drugs. Some of my symptoms have improved over time (fatigue, muscle soreness, frequency of twitching) but some new ones have appeared (muscles not feeling as firm and flaccid). Overall, I would say I am better than I...

Hello- I just wanted to say Hello to all of my friends on this forum and wish you the best. I dont have any new news, some aspects of my illness have improved, some have slightly progressed but no major developments. Take care everyone, have a happy holiday season! CB

Yes, I have had multiple EMG's, my last was in May. All were considered normal and only showed fasics. They are going to do a follow up EMG in Jan. I have also been tested for a ton of other things...MG, Stiff man syndrome, muscular dystrophy, Celiacs, MS, Lyme....they are pretty much out of...

I just got the results back on the Celiacs test, it came back negative. Oh well, I dont get my hopes up anymore when I take these tests, I have had so many over the last 18 months. When I started doing some research into the issues with my pinky and ring fingers, I found something interesting...

Hello- I have been posting here for about 18 months now. I have not posted for a while. I decided to come back to give an update and to also get some input on my most recent test results. I don’t want to make this post tedious to read so I wont go back and do a re-cap of all of my symptoms...

Nobody knows at this point what causes ALS. They also don’t really know what doesn’t cause ALS so all of these things that are talked about on this forum and others are suspects. I think speculation is a good thing, everything starts with speculation or hypothesis then investigation and...

All tests negative This is very disappointing to me. All of the test I had done came back negative except the CPK which was at 302. I was really hoping the DM2 test would come back pos. even though I knew that twitching is not a symptom. Oh well, back to the drawing board I guess. Next step-...

John- I want to tell you that I had the same experience in the beginning of my own journey. The first neuro I went to said that I looked healthy and was to young to have ALS and sent me on my way. 6 months later an ENT was looking in my throat because they thought I had acid reflux damage and...