• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Devastated:Lost a special doctor today

andreamarie

Senior Member
Messages
195
All psychiatrists are not bad. Eleven years ago I went to a psychopharm who specialized in sleep disorders. He helped me enormously and always felt CFS was a major illness. He continuously tried to help me with fatigue. He tried many meds that other docs weren't even aware of. He called docs across the country if I found an article. We were about to try Nuvigil. I called yesterday for an appt and was told the no I called was not a working no.

I emailed him. He emailed back that he was laid off and given a new position doing research and could not see patients because colleagues fired would take legal action.

I called him at new no. and told him how badly I felt for him. I knew he was devastated from his email. I got his snail mail address so I could write him a personal letter. I don't trust the net. He said the support of his patients was so important to him but he was so concerned for these patients.

This doctor did so much for me, but more important, he never quit. He gave me hope. Now he's not even legally allowed to make a referral. He was part of the support group that I assembled that is crumbling. This has been a very sad day.
 

andreamarie

Senior Member
Messages
195
I won't be taking Nuvigil, because he is no longer my doctor. No other doc I see will prescribe it, because they don't have experience with it. He did some of the prelimnary studies and has had considerable success using it with MS patients. I hadn't pinned my hopes on it; a major side effect is nausea, which I got from Provigil. I'm upset because he can't be my doctor anymore.
 

IntuneJune

Senior Member
Messages
562
Location
NorthEastern USA
Similar case

I had a wonderful relationship with my primary care. We would discuss articles I would bring in on different modalities, sometimes he would agree to give it a go, other times not, but he would listen. So we had a good working relationship, a level of comfort. Yes at times I would be disappointed, other times, pleasantly surprised. But I had a sense of control in my health care.

He retired.

OMG.

Now, brand new guy, I will give him a chance. But I did see an eyebrow raised. Hmmmmm

I know I am ready to pounce. :)

June