ALS Support Community

I don’t have anyone to care for me, was always living paycheck to paycheck and in a rental where there are too many stairs. I have no idea how I will get through this. Will see what tests show this coming week. When is your next follow up?

You stated your pets are sick as well? How long have you been living in your current place? Does it correlate at all with your symptoms? The reason I ask is that I’ve heard horror stories about people and pets who live in homes/apartments with toxic mold and getting very sick, to include lots of neuro symptoms. Maybe something to consider if Mayo says no ALS (sending strong prayers your way it isn’t ALS).

I’m soo sorry everything is so tough for you right now. One thing at a time. Let’s first hope it’s not ALS, and if it’s not, any other obstacles can be overcome.

My neuro ordered a neurogram with contrast to try and trace my nerve roots to see if my MRI missed an L5 issue that could cause my devervation. Unfortunately, the next available date for that test at UCSF is mid-October. So, I’m in a holding pattern until then. The lack of answers and waiting game is sooo hard.

Hi, my pets have very different illness and have checked for mold in the past but good thought though. It’s honestly not looking good with the symptoms progressing and the concern from the Drs so far.

I just know this is a good place to be seen at and they will cover as much as possible to find answers. Things were progressing too quickly for another local quick outpatient visit 1-2 months away. I’m so sorry you have to wait and can hopefully get in sooner if cancellations

Which Mayo Clinic location did you go to and how has your experience been thus far? Sounds like they are doing many different tests? Do you just go back everyday or are you staying there? I wish I could just be admitted somewhere for days or a week to have all diagnostics, rule outs, exams, tests, etc. done at once versus what we’ve both been going through. Being in limbo is so hard.

Thanks. I’m hopeful to get a neurogram much sooner than October. Fingers crossed. Sending positive thoughts your way.

If I can’t get answers soon and you have a good experience at Mayo, I may have to try there too.

In MN, they have the best Neurologists in the country from what I read. Just couldn’t keep spending days in local ER’s getting worse with no answers. Can call their Neurology dept to request an appt or have your primary, etc send a referral

Thanks for that info. Did it take a while to get an appt?

Based on symptoms and being a new patient they were able to get me into Gen Neurology pretty fast to start then they go from there it sounds like

Hey there. Just wanted to check up on you. How’s everything going at Mayo? Have you been able to get any answers?

Hi, still need to get some tests done, hoping they can fit me in soon so just waiting to do this first. How are you?

Have you had an EMG at Mayo? I’m, ummm, meh, in all honesty. Trying to stay positive. My foot and ankle feel weak and loose and my tibialis anterior continues to waste away at a drastic rate. My MR neuropathy isn’t scheduled till mid october and they don’t have a cancellation list, so I call all the time to see if they have a sooner appt. I can’t just watch my muscle and maybe ability to

Eventually walk just dwindle way. If this truly is a back issue, which sadly, I don’t think it is, as I have no severe or radiating pain down that leg (it’s localized to the muscle), I need back surgery yesterday. There seems to be no sense of urgency on anyone’s part to help. I have to push hard to get tests, answers, appts etc.

Hi, no EMG yet.. sorry you have to wait but definitely keep calling. Having to push for appts and long waits etc seems to be the norm these days sadly. My shoulders, neck, back, upper arms and hips/glutes/pelvic areas have so much muscle loss and weakness it’s pretty frightening. Drs note hyperrflexia in reflexes now which I didn’t have before this all got so bad. Life has changed pretty drastically, sigh..

I’m soooo sorry. I’m continuing to pray and send positive thoughts your way.

You are 100% right. We have to be our own advocates, or stuff doesn’t get done. Sad state of medical affairs. I’d love to have a doc take the bull by the horns and help us figure this all out.

Thank you, same to you! Will be interested to see next EMG. Drs put so much focus and rely heavily on the test which makes me want to believe as well but my body has been opposite so far

Thanks and I’m in exactly the same boat as you in that regard. My thenar area has major atrophy and twitches but nothing at all showed on EMG. How is that possible. Any idea when your next EMG will be?