Recent content by Acronyc

Hello everyone. Some of you might remember my post last year with some symptoms I had that were concerning to me. I won’t rehash everything, but I had (and continue to have) large fasciculations constantly and bilaterally in my calves and sporadically throughout my body and muscle stiffness and...

Molly, I believe GregK is right, if you have a diagnosis of CFS there are CFS forums out there that would better suit your concerns. There's a good Facebook community about CFS/Isaac's/PNH out there (search for ISAACS.PNH on Facebook). As I believe I mentioned before, from what I've been told...

Molly, believe me I know how this diagnostic process is. When I first went to the doctor after two months of symptoms, they all brushed me off because of the amount of exercise I was doing (I was an ultra marathon/trail runner). My current neurologist, the one who finally took me seriously...

Molly, I have a similar experience to yours except I've had fasciculations and cramps for about six months longer, since May 2014. In early August 2014 I received a similar diagnosis: CFS or Isaac's Syndrome and no ALS now. As Nikki mentioned, nobody is immune to ALS so I think many neurologists...

ErinT, your neurologist said that you don't have ALS. That's fantastic news! As Nikki said, I don't think that he would lie about the results just to make you feel better. As for the twitching, as I said before I've been twitching constantly in my calves for 9 months (to the day today) and while...

Al, I log on every now and then to try to give a little advice to others who might have similar symptoms to myself and be worried. Particularly for CFS and Isaacs, which have similar symptoms to early stage ALS, I know how easy it is to end up here and be concerned. My mind is at ease and I've...

Al, I hope so too! In my defense, I saw my first neurologist after about a month of fasciculations and she blew me off because of the amount of exercise I used to do. After six weeks of symptoms my second neurologist took me seriously (and actually mentioned ALS as a small possibility, along...

ErinT, it's funny you mention those articles as I've read them both before and thought the same thing. They seem to contradict everything we're told about ALS, both here and in other places, and even from a number of neurologists I've spoken to. They also worried me as they are rather atypical...

Bigpiz, to relieve your concerns a little and for others who might be worried, I wanted to briefly relate my experience. Fasciculations don't equal ALS. It's one POSSIBLE symptom of ALS (not all PALS have noticeable fasciculations) and in extremely RARE circumstances it can be a first early...

I in no way meant to be mud slinging, and my apologies if it came off that way. I'm in for a follow-up EMG today (first time I did the tongue and that was not fun) and have been waiting for my results for a while now...probably not thinking or writing my best. Looking back at my post, I...

Nikki, thanks for this thread. As someone who is still going through the wait and see process (I've been given an Isaac's Syndrome diagnosis for now but have also been told that ALS can't be ruled out in my case until 2-3 years after my initial symptoms started), I've read many posts here, old...

Blood work is done to rule out other diseases that can mimic ALS symptoms. If all your blood work comes back okay, then they look at other possible syndromes/diseases. If all you have is twitching and some cramping - that has gone away - over three months, that's a good sign. From what I've...

Findinghope, first, while I don't live there anymore it's always nice to run into a fellow Wisconsin native :). Two things about your husband's case piqued my interest. First, you mentioned that his fasciculations started following a viral infection. Second, you mentioned that he has...

I read the same story and briefly thought about the same thing, particularly since I've been having fasciculations constantly for only three months. However, I don't think that entire story goes into detail on Mr. Frates' timeline, and as Nikki and Dusty7 mentioned he had other symptoms that...

Hi Panos, I see that you are in my ancestral homeland! My dad is from Μεγανήσι and I miss going there as I haven't been back since 2008. We also seem to have some similar symptoms, but I would say that if you've had over 20 EMGs, all of which point to no ALS, and have had no progression for 9...