Shameless Troll #18

[jeffn]

What type of doc do you consider to be your Primary Doc? PCP, Rheumy, internist, or.....? Do you have one doctor that monitors your condition and all your info from various other doctors or do you just have a bunch of different docs and you handle all the sorting. How do you handle this?

[steve201]

mine was a crazy time when I first got SD...my pcp was an idiot...I was so sick I couldn't even think....
so...marsha was turned onto a doc down in seattle...he believed in working as a team or a team effort....we contacted him and he agreed to take me on...all of our doc's were to report to him....once we got everyone on the same page...
everything was to be reported to him..he played as the qtr back....all lab results went to him as well as pt...psychiatric reports ...everything....ct scans reports...everything went to him...if he saw anything that wasn't working..then he'd contact the doc in that area and have a consultation to discuss my progress or lack of......
my Rhummy managed everything associated with blood/ct/drug application.....the pcp managed all the other items...psychiatric reports/therapies/scans/blood reports...etc....even pt and vitamine therapy went to the pcp....
my recovery was a complete team effort....
I'm now at the point where I don't need a pcp to manage all the reports and therapy...I can manage everything else..

Steve

[mumof3]

I have 3 doctors......my AP doctor who handles everything with AP and supplements etc. and monitors me. She is the absolute best! I have my regular GP that I go to as well as needed since my AP doctor is hours away. Then I have my rheumatologist who is absolutely horrible. Fortunately I only have to see her once a year for bloodwork/tests etc.

[jeffn]

I just go to the Rheumy in Boston once a year currently but my PCP has always been my clearing house. After I found Rheumy #3 and began the mino I felt I had somewhat settled in. My PCP had been open to AP even though I don't think he believed at that point. BUT he did not lose interest in me because I opted for AP so that was good. Last fall at my check up he commented that my hands really looked good etc. and that the mino had worked well for me with low side effects and risk "compared to the stuff they usually put people on". He really had not said anthing about AP pro or con previous to that. He had just kept tabs and was always helpful when I went in to see him. After I got started with the Rheumy in Boston I told him that I considered him the "watchdog" and if he thought I needed something don't assume anyone else was going to take care of it. He told me that was the way he liked it. It has worked well so far.

[aajmom]

Icondsider my sclero rheumy to be my "Primary doctor". I see her more often than any of my other doctors and thru all of my appts she hears about everything else that might be going on (with my dermatologist, internist,gyn, etc). Since she is at a large hospital she automatically has contact with my pulmonary doctor and cardiologist (she referred me to both of them way back when). I feel like she really manages my care and anytime I need results sent somewhere, she's happy to do it! If I have tests that were ordered by one of my other doctors I get copies of the results and get them to her.

I feel fortunate to have such a wonderful, caring sd doctor and I feel like I can't beat the relationship I have with her. Therefore, all these factors have contributed to the fact that my sd doc functions as my Primary doc.-Adriane

[kathsherman]

Well, I have a local PCP and she's great as far as being familiar with my "health issues" and is in charge of my general health. My Sclero-Dr. is a Rheumy and located about an hour away. I consider him to be my "in charge" doctor. He oversees all my tests and is consulted regarding any/all results or health changes. He is my comfort....I see him every 3-4 months and always feel like he takes the time to listen to my concerns and ACTS on them. He never under-estimates my scleroderma knowledge and values my opinions. We work as a team....so far so good. I see a pulmonologist for monitoring/check ups (pft's). I see a cardiologist annually for an echo (check-up). This past year, I began to see a Gastrointerologist because I became symptomatic (voice hoarseness) and had to take a higher dosage of prilosec for reflux.
SO.....meet my team of wonderful health professionals.... they help to keep me well and monitor the sclero to prevent further complications. My Rheumy is my "go to" guy and my PCP is my regular physician. All the others report to my Rheumy. I always check with the nurses prior to any scheduled appointments, just to be sure that my labs (blood work) or any test results have been sent. Luckily, I have had no problems with lack of communication between Dr.'s. They are all knowledgeable and experienced professionals. In the past (when I was first DX in 1993), my husband and I visited a sclero center several hours away to be evaluated (second opinion) and that particular Dr. was a colleague of my current Rheumy. I am so thankful for insurance and feel grateful for the excellent care I receive.....
Sorry so lengthy....
P.S. I don't like going to Dr. appointments! They are a necessary evil. I really try to schedule my check-ups around the same time, just to get them done. I try to keep my summers "appointment-free", so I can enjoy the warm weather with my husband+daughters. I don't like feeling like a "patient".
Kathleen xo

[sherion]

I have a PCP that's about as worthless as dust! I have to get all my referrals from him, but he always seems to tell me to see my Rheumy for about everything. Therefore I consider my Rheumy as the "go to guy". He wants reports from all my other docs, cardio and gastro. The cardio and gastro docs are great. They, including Rheumy also send reports to the PCP. I think they pretty much work as a team, although I haven't had anything too serious to deal with. Not too sure or confident in the PCP or Rheumy if I had to go on AP. I think I might just have a fight with them should the occasion ever happen that I feel the need for AP!!! I always forget to ask my Rheumy hw he feels about it. He did say in the beginning that if I worsen, he"d have to bring out the "BIG GUNS" so maybe, if I'm lucky, that's what he meant. Maybe someday I'll remember to ask him.

Sherion

[joyu]

I see a local Rheumy, that would be my primary doc,but she follows the sclero.center doc orders for sclero drugs( I only see him 2-3x/yr) but also the local rheumy covers all other sclero issues and meds. All reports are sent to sclero center,local rheumy and my PCP.

[grammie]

Having moved and needing a pcp locally has made my illnesses a bit more challenging to have the pcp 'in control'. I really haven't developed a relationship with them yet.

It is really my doctor for my other illness that encourages me to 'have this checked out'.

I'm a bit disappointed with my rhym. for I really don't think he is following the blood tests/liver tests. He seems to brush me off when I go in. I do take my latests tests but the last two times he didn't even look at them. Got me, Jeff, since he is the same one as you. However, he did put me on AP which is what I wanted and went to him for. I see he next week. Will be interesting.......

Anyway, the bottom line is I have copies of all my tests so I can have a file should I need to take them to another doctor. That has helped the monitoring a lot.