ALS Support Community

Yes Feb 17 and it was normal but since then i have developed a thumb tremor and its painful in the joint. I will have another emg in july

@Cmc2007 my last neuro scheduled my next emg for August but it not for checking suspected ALS, but to check any pitch nerve. I will lost all my arm muscles by that time lol

Well any emg should pick up any abnormality. But even tho people say it cannot be done to early thats not true. Every case is different. I had mine 2 months ago and thank god it was normal i have developed other symptoms i didnt have then. My next one in July im praying will also be normal but who knows

@Cmc2007 agreed. My doc said that if Emg had done on atrophied muscle it should show something in my case. But nothing was there.

When I had mine on Feb i didnt notice any atrophy. But since then i have noticed my right pec smaller than my left. Also both arms. I have always worn watches fitted to my wrist and all of sudden there to big. When i told my doc that at mayo she still didnt seem to concerned.I was told i can have another emg in july which would make it 6 months from onset of symptoms. she said it was for my piece of mind not hers.

@Cmc2007 is it worth it to go to Mayo?
I have Stanford and UCSF (With ALS clinic) but it’s incredibly hard to get an appointment there. They request all the documentation from doctors and referral. .

My neurologists don't want to send referral since they think that everything is okay even tho they can't explain my atrophy. Plus they messed up with appointment notes. My pcp was the only one who agreed to send referral there but my neuro said they would reject me since I had clean EMG.. They should answer next week

And doctors tell like: forget about ALS, you don't have it.
How they can be that sure.. Honestly, this is so frustrating..

Its a really hard process for sure. No one believes anything and it gets annoying. Mayo is really good my wife works there and has gotten me in pretty quickly. Its a horrible waiting game tho

Im 4 months in with no answers. Thumb trembling back and forth and awful pain in my joint and im supposed to believe its not related to the twitching and cramps i have all over? Its horrible

Family gets frustrated and everyone believes its all in ur head. But what sucks with this illness is that they need to catch it and the right time. Im 4 months in with obvious symptoms & still gets brushed off.

How are atrophy, cramps, twitches, involuntary movments of fingers not a cause for concern? Ive had tons of blood work extensive blood work and everything was normal. I have to wait for july for another emg and pray symptoms stop which seems not real

@Cmc2007 agreed!

Quick update from me.
UCSF ALS recommended me keep follow ups with local neuro ( rejected me). They also said that if I developed more symptoms my pcp should send notes to them.
I checked notes from last neuro appointment and found out that even tho he admitted my atrophy, he mentioned in his notes that I don’t have atrophy.. so frustrating.

At least I could sent it to als clinic so there would be a good reason to see me.

It seems not realistic to get an appointment here. I scheduled a call with Mayo Clinic to schedule an appointment there, at least they don’t need referrals..

I’m so sorry . I hope they can get you in quick at the Mayo Clinic . Please keep us up to date. My Aunts a nurse and she also thinks I have it at this point. I’m so scared.

@AnnaGol you are doing the right thing pushing for answers, hopefully they will accept you at Mayo.

@Hensleemom this is so scary, I hope even though she is a nurse she might be wrong. But I know how you feel when someone confirms your fears that something is wrong. I am having EMG done tomorrow. I don’t know what to think or hope for.

For me it’s most likely the muscular dystrophy but it seems to have accelerated after pregnancy and as I have a little boy he is almost certainly has it too. I just feel sick to my stomach