Mayo Clinic has the same approach as UCSF, they want me to send them all documentation and then they will take the decision whether they want to see me or not.
I’m back to the square one.. feeling so helpless
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..
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...
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...
@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. .
@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
Honestly I’m so devastated to see muscle deterioration so fast, I’m only 2 months in having symptoms and muscle loss is significant, and I see that it progresses every day more and more. And I can’t get any help..
@Hensleemom atrophy is not only in the arm, but I have stiffness in my legs especially above the knees.
I feel like I’m crazy too I’m trying to get an appointments, referrals but doctors think that I’m anxious and all this, but hello.. atrophy, weakness, stiffness..