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karla r

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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!
 
Sorry you have to go thru this. Can you get your paperwork and submit them yourself? Ask to be put on the cancellation list. Maybe get a referral to a doctor who works at the clinic for an appointment on non-clinic days and they may be able to fast track you in? Again, sorry for the pain in the butt. I have found that on of my doctors will fax the orders but the fax on the other end is busy and it never gets completed.
 
I have 1 report on my legs from May 2014. The actual print of the test was lost, along with the report and test print from my arms. I have the test print from my arms from March of this year for the emg and ncs, but the report, and the emg&ncs for the legs have all been "misplaced". I do have the mris of the brain and spine, the muscle biopsy, and blood works because they are from other doctors. So, that is why he may have to repeat the emg and ncs.
 
I am going to try to get the different forms from my file, to take with me. Hopefully I can get them.
 
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