Re: Babs/RA docs

[Guest guest]

Babs yes I do have a RA doc and switched a couple of years ago. My

old ra doc wasnt ever good at listening to me even to the point I

siad you dont listen to me. When I would ask about new treatments or

tell her this isnt working or that isnt working. The biggest reason i

did switch is my ex-father-in-law was diagnosed with RA around the

same time as me, some how we managed to get the same RA doc. Well 2

years ago he died of RA in the lungs. I think she could have saved

him had she been monitoring him like running the xrays and checking

the feet and hands etc. The entire time I was there I dont think she

ever ran an xray on me accept for me feet and hands because those

were really bothering me. So after he died I just felt really

uncomfortable we wont talk about the two times in a row I went to see

her and was falling over sick and she didnt do anyting both times I

was admitted to the hospital that same day, she would call me and say

oh my gosh I am so sorry. Whatever lady!

I have no deformaties and I only got nodules twice before way back in

the beginning.

I find with this RA doc she likes the status quo and i have to give

her things to try she doesnt take the initiative to find things or

anything. it is the same thing with all my docs nobody wants to hunt

for things or go finding them. I like the ra doc because she takes

her time and listens to me but isnt easily availalbe and will be

retiring I am sure within the next several years.

My gp doc is the one I made run all the lupus tests for me years ago

I dont know which ones she ran, but I am going there today and having

her run them again. See I would think the RA doc would be saying

lets check what you got here and run everything but she never does,

she always checks the regular labs, CBC with Diff, the liver

functions, thats its.

Every where I go people just say I am complicated and no one wants to

find out whats going on with me. The ra doc did say she would send

me to a immunalogist, then the mayo docs say to get to an infectious

disease doctor, and then the ra doc is upset with the mayo's

recommendation for meds because he said rituxin is the only one I

should use after these one pills if those dont work, she says rituxin

is a b killer and b cells are what you use to fight infection so how

could you give someone who cant fight infection already a drug like

that? Which if thats the case then why? Because you get it only

twice a year compared to every 4 weeks? I dont know but you get to

the point that you dont know who to trust and maybe they are just

passing the buck back and forth and maybe your just making this all

up. The rash is like a redness to my face that covers both my

checks and over the bridge of my nose, it feels a little different

then the rest of my skin. I found pictures of the malar rashes and

there are several out there that mine look like, mine isnt the

extreme that most of them are. and for the most part its always there

yet no one pays attention when I tell the docs they say nothing, my

face has always been kind of flushed in the checks and nose area.

I dont know what I do know is I am tired of suffering and I am tired

of no one listening to me. So I am going over to the infectious

disease people because I need to find something out and I need them

to test until they find something because everytime i start

medication for the RA I end up in the hospital with a major infection.

Thanks for your answers. I did know they were different and new

lupus effected the organs but I was trying to see what kinds of

things happened to you with the mouth and teeth and all that to see

if it was similar to what I have been experiencing.

Thanks a million!

Sandie

suffering succotash, WI 2007, 37

> > > > > > > > >

> > > > > > > > > Zena,

> > > > > > > > > I know you won't see this for a bit because of

the

> > time

> > > > > > > difference but

> > > > > > > > I was wondering if you could share with me what

kinds

> > of

> > > > > symptoms

> > > > > > > you

> > > > > > > > have/had from the dermatomyositis? How was it

> > diagnosed? My

> > > > > doctor

> > > > > > > is

> > > > > > > > planning a biopsy of the rash and blistering on my

> > hands

> > > > but I'm

> > > > > > > having

> > > > > > > > alot more fatigue recently and some muscle and

joint

> > pain.

> > > > I was

> > > > > > > > wondering if you had those kinds of symptoms?

> > > > > > > > > Anything you'd care to share I would greatly

> > appreciate.

> > > > I

> > > > > feel

> > > > > > > like

> > > > > > > > my body is revolting against me. LOL

> > > > > > > > >

> > > > > > > > > Beth in NC age 48 Fibrotic NSIP 06/06

> > > > > > > > >

> > > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

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