karla r
Distinguished member
- Joined
- Apr 30, 2015
- Messages
- 148
- Reason
- Learn about ALS
- Country
- US
- State
- South Carolina
- City
- roebuck
I am upset, frustrated, and kinda angry. I was worried because none of the ALS clinics have contacted me about an appointment even though the referrala were supposed to be sent June 11. I checked 3 times with my doctors office, and was told they would send the next day. I actually went there 2 weeks ago, to have another paper sent toy long term care office, and found none had been sent. The receptionist said wait a moment, came back and said she sent them. I called all 3 clinics, and long term care today. Not a single one had received a referral, nor did long term care get the order for the protein drinks. None. Now the closest clinic to me has a 6 month waiting list for new referrals, with the actual appointment taking another 2 to 3 months. Guess I have to get a new local neurologist. My PCP sent a referral over to a different neurologist today, they will call me tomorrow for an appointment with him. But, since nobody can get any of the tests performed at the neurologist like my emg and nerve conduction studies, I will most likely have to have the repeated before he sends me to the ALS clinics. They did say they would expedite them as fast as possible. I am upset because this delays me getting the drug that helps extend life by a few months. Although, if this neurologist thinks it is ALS also, maybe he will prescribe it for me. He is a mnd specialist, although not ALS specifically. Just, so upset.... Apologies for the long post. Just want to scream!