I feel as if I'm at a new crossroads after 8 years with CFS....I would love feedback/ support.
Ive been a patient of Dr. Jose Montoya at Stanford for 8 years now.
Last week I had a follow-up visit with one of his PA's -Physicians Assistant who specializes in CFS.
Definitely not what I would expect from a Chronic Fatigue practitioner at all....and Ive seen her many times before.
After she asked me how I was doing and I explained that I spend at least 50% of my waking time in bed, she expressed surprise. REALLY??!! You're a Chronic Fatigue Practitioner and you're surprised that I'm in bed
this much??! I was so unbelievably disappointed and have never felt so dismissed and depressed since I was diagnosed. She also asked if I was on disability. YES, Ive been on disability ever since you've known me.
She somehow acted like I was still so sick because I wasn't cooperating and taking the meds she and Dr Montoya had prescribed. I don't do well at all with meds and had a horrible reaction to an anti-inflammatory they prescribed last year. It changed my personality and I started to lose my hair. So not a big fan of random meds.
She had prescribed Naltrexone months ago and I had a horrible experience when I took it as directed- at bedtime. I was lucky if I slept 4 hours that night. It took me a week to recover.
So after my visit last week and now feeling very insecure about being on SSDI, my illness and the lack of support I just experienced, I decided to have another go with the Naltrexone. I took it this time during the day and became horribly unbelieveably sick. Nausea like Ive not experienced before. All I could do was get into bed and hope I didn't die. It was THAT bad!! At one point I thought if I did die, that I'd certainly feel better.
So I'm wondering what others experience has been with Dr Montoya and his team over the last year or so?
Ive been very disappointed.
The last time I actually saw Dr. Montoya I had to wait almost 2 hours and when he finally came in to see me, one of his staff kept interrupting to tell him when and where the staff meeting was that he was now running late for. I was angry to say the least and did not feel cared for nor very important as his patient.
The last thing I thought Id be dealing with is feeling unsupported and dismissed by Chronic Fatigue practitioners.
Ive been a patient of Dr. Jose Montoya at Stanford for 8 years now.
Last week I had a follow-up visit with one of his PA's -Physicians Assistant who specializes in CFS.
Definitely not what I would expect from a Chronic Fatigue practitioner at all....and Ive seen her many times before.
After she asked me how I was doing and I explained that I spend at least 50% of my waking time in bed, she expressed surprise. REALLY??!! You're a Chronic Fatigue Practitioner and you're surprised that I'm in bed
this much??! I was so unbelievably disappointed and have never felt so dismissed and depressed since I was diagnosed. She also asked if I was on disability. YES, Ive been on disability ever since you've known me.
She somehow acted like I was still so sick because I wasn't cooperating and taking the meds she and Dr Montoya had prescribed. I don't do well at all with meds and had a horrible reaction to an anti-inflammatory they prescribed last year. It changed my personality and I started to lose my hair. So not a big fan of random meds.
She had prescribed Naltrexone months ago and I had a horrible experience when I took it as directed- at bedtime. I was lucky if I slept 4 hours that night. It took me a week to recover.
So after my visit last week and now feeling very insecure about being on SSDI, my illness and the lack of support I just experienced, I decided to have another go with the Naltrexone. I took it this time during the day and became horribly unbelieveably sick. Nausea like Ive not experienced before. All I could do was get into bed and hope I didn't die. It was THAT bad!! At one point I thought if I did die, that I'd certainly feel better.
So I'm wondering what others experience has been with Dr Montoya and his team over the last year or so?
Ive been very disappointed.
The last time I actually saw Dr. Montoya I had to wait almost 2 hours and when he finally came in to see me, one of his staff kept interrupting to tell him when and where the staff meeting was that he was now running late for. I was angry to say the least and did not feel cared for nor very important as his patient.
The last thing I thought Id be dealing with is feeling unsupported and dismissed by Chronic Fatigue practitioners.