Visit to RM

General What's New With You?
1

I had an appointment with my RM yesterday. I swear she is so disengaged with me. She run's through the same ole same ole. Are your eyes dry? Is your mouth Dry?, Do you have pain when you get out of bed in the morning? How long does it last? blah blah blah blah. When I try to ask questions she always puts it off on another Dr. For instance: I stated my hair is falling out really bad. I said " I went and had a hair cut and the hairdresser was very concerns because the sink was covered". I ask " Will plaquniel make that happen? Or is it the SS ? She cut me off before I even got the 1st question finished and I cut her off and finished asking the questions, She then told me I needed to go back to the Dermatologist and ask her if I didn't already. She didn't have any of my lab work from when she referred me to the Dermatologist from the rash with biopsies, Of course I told her there was no reason to go back to the Dermatologist there was nothing she could do for the rash. She stated to me what is the rash, I said I can't pronounce it, don't you have the records, she said NO. She then told me to get them and send them to her I said NO your people need to call the Dermatologist office that YOU referred me to and get the results. (I work a full time job, and I pay a lot of medical out of pocket)

I try really hard to study as much as I can about SS. To do the right things and I am proud of how far I have come. I have totally change my life in order to survive. My eating is so very different and better, I eat lots of fruit, lots of fresh Veggies, drink veggie juice each day, I don't eat fast food, I don't drink soda, eat sweets, or junk food any more. I take lots of supplements that have Helped me. I have felt 100% better this month than I have in 6 months. I have lost 25 pounds and working on 20 more to be where I need to be. It doesn't feel as though she is on my side, or even cares. Is it just me?? Or does she seem disengaged from me? ( Meaning not on the same page as I am.) I thought about it and at first I just thought maybe it was me...But I don't think so. I told her my primary referred me to an Neurologist and she didn't ask why at all. Unfortunately there are only 3 RM's in my town and they are all in the same group. Next nearest one is 2 1/2 hours away... I left my appointment so frustrated, upset and inapt. Am I too needy ? I mean am I expecting to much from her? Still fuming 24 hours later. Beeb

2

Beeb, the fact that you are still fuming says a lot. We all know when we are not being taken seriously enough or being rushed along by a doctor. I have multiple health issues and my docs always either A) check the computer to see if they can see any of the results they are looking for (many of mine come under the flag of Mt Sinai) or they have the office people make the call while I am sitting there.

I will say that my rheumy has a standard questionnaire that you fill out in the waiting room that asks about pain and functioning for the last week that they score. They do it every time because its important to keep tabs on. BUT,that way he doesn't have to ask the same questions and can get to what else is going on.

It gets very tiring advocating for ourselves all of the time and I totally understand the frustration. 2 1/2 hours is a long drive, especially in our state, so its a very personal decision whether to switch or not. As a last ditch, have you tried walking in with a written list of questions and handing them to her or the nurse so she knows what the concerns are you want to address and (maybe) have a harder time disregarding them? I don't know what the right answer is but I do hope you'll keep us posted. Congratulations on the weight loss and feeling better in general! That's exciting. Onward!!

3

Hi Beeb

EnjoyLife gave you a good reply I agree with the written list to give to the dr. My dr also has the form you feel out before i see her. Congratulations on doing better. Let us know how things go.

4

Hiya I know how this feels and I got to change Reumy clinic to be told I need to eat more fibre....this is the worst advice yet and she dismissed everything I told her so when I see her next I now have a folder of all medical related paperwork (and a copy of my letter of complaint) and a notebook of my symptoms. If you need to ask for copies of everything, reviews, results, bloods, eye checks...everything. I keep a wk by wk notebook so easier to track flares and figure what is best for my body. If you treat them as they know less than you do they may just listen but make sure they make notes for your follow ups. If they don't ask or respond to you is because they just don't know enough about Sjogrens.