NeuroTalk Support Groups

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-   -   ARA 290 for the Treatment of Sarcoidosis-associated Small Fiber Neuropathy (https://www.neurotalk.org/pn-tips-resources-supplements-and-other-treatments/231085-ara-290-treatment-sarcoidosis-associated-fiber-neuropathy.html)

donamel 01-24-2016 12:11 PM

Cleveland Clinic is Best
 
I moved to Georgia unbeknownst the issues with receiving adequate health here. Have been back to Clinic several times since. They diagnosed the pulmonary sarcoidosis in 2010 and had been treating me for hepatic sarcoidosis prior to that. They now diagnosed the ASFN in 2014. No one down here had a clue. I think it is wonderful that the Clinic is involved in this. They practice what I consider aggressively while down here it is so conservative that one could easily die. If I have crazy stuff going on again, even though I'm too poor for a plane ticket, I'll have to find my way back to the Clinic.

donamel 01-25-2016 09:11 PM

Crazy Stuff Back Again
 
Well, the crazy stuff with the sarcoidosis is back again and I'm too poor to get a plane ticket to the Clinic. Such is life! As cold as it is in Cleveland, should have stayed there to get better medical treatment, but then didn't know how bad it was down here. What is interesting is how many people live to be quite old here in Georgia! Hum!:)

Cliffman 01-26-2016 11:07 AM

Quote:

Originally Posted by donamel (Post 1195185)
Wonder if I will still be alive in 2019. I will be 68 this year and have suffered from sarcoidosis for more than 40 years. Tired of it and all of its crazy complications. There is much more known about diabetes than sarcoidosis, hence the title "orphan disease." No matter, whether related to sarcoidosis or diabetes, anyone with autonomic small fiber neuropathy needs help. Don't know much about how small fiber neuropathy works with diabetes patients. Does it also mess with heart beats, temperatures and cause orthostatic hypotension, along with pain, numbness, etc?

Yes, it can and does in my case.

Cliffman :)


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