Doc.'s don''t want to "diagnosis" me (need advice)
Hi ya'll i'm 21 years old & ever since the 6th grade i've had pain around my joints & major fatigue. I used to miss school often b/c of the prior days p.e. activites leaving me in so much pain the next morning. I was sent to Shriners Childrens Hospital in KY & they did blood work & said they thought i had jr. RA. As i got older the problems i had got worse & new symptoms began to appear. I had shingles at a very young age which is unusal and now that i'm older i have extreme fatigue, extreme pain arount my joints that seems to start at the joint & spread outward, headaches, fevers, hair loss, i get cold very easy, have a very hard time gaining or keeping on weight, swollen glands when i'm not sick, irregular periods, mouth ulsers that appear only on the roof of my mouth every now & then before a flare, mood shifts , photosensitivity, a very mild pinkness over my nose & cheecks that doesn't disappear & looks brighter when i'm in cold weather, a rash on the back of my arms and top of my legs which isn't acne, etc. Then when i was 20 i got pregnant & all those symptoms got 50% worse & new ones came along.. i had a dry mouth all the time & had to keep drinks by my bed at night, viginal dryness, my heart started feeling like it was catching in my chest like it was skipping beats or like i was about to have a heart attack, but since i'm only 21 i was thinking it might have something to do with pericarditis, i also started having kidney infections so bad it hospitalized me when i've never had one before & i was drinkin tons of water, my legs started giving out easily, etc. some have disappeared & some have stayed even after i had the baby. After the baby my hair loss has come back & gotton worse.. i want to cry every time my hair falls out in the shower & have to pull it off my shirt all day. I've been to 1 internist & 2 Rhumies & many physicans. They all have done thier own blood work and my ANA always comes out a little elevated but thats it. My thirod is fine too. The doc.s never spend anymore then 5 minutes with me, rush me out of their office, won't take the time to listen, and treat me like i'm crazy.. it frustrates me so bad i almost cried last time i went cause i feel like i keep hitting dead ends! The pain goes away for a while & then always comes back again like flares & it gets so bad sometimes i can't bare to walk. The pain seems to go from one joint area to the next then jump to the other half of my body. When i asked the doc. about lupus & if he had any info about sjogrens they try to run the other way! Their all very rude & treat me like i'm stupid. The doc's avoid givin me a diagnosis and all they'll tell me is i don't have arthritis b/c my joints don't swell and ask if i wan't a mild pain med. I tell them no b/c i've tried pain med.s and they don't help at all and nither do NSAIDS and they make me sick. I want to be put on a preventive med. so i don't keep fallin apart but they say they won't cause they haven't diagnosised me.. I have a thousand symptoms & all the blood work in the world! What more do i need before i can get help!? Does it sound like lupus to anyone else? The doc.'s act clueless.. i need advive.. i don't want to keep hurting and it's effecting my everyday life style and makin it hard to take care of my daughter.
Gretchen, what part of Tennessee are you in? I'm in Kentucky, but I go to Vanderbilt (Nashville) to see several doctors there. It sounds like you need a thorough workup with a doctor who will take the time to listen to you. Have you talked to your family practice doctor or your gynecologist about finding a good rheumatologist who might be able to help you?
I'd say you need a good rheumatolgist--and soon.
I'm sorry you're feeling so badly. I know how you feel though... my doctors avoided a diagnosis for various reasons (insurance, life insurance, etc)... but ultimately had to "write it down".
I hope you find a good doctor that will sit with you for as long as it takes (mine sit with me for up to and over an hour on each visit).
I'm SO sorry to hear that you are going through such a hard time, but please know that you are in my thoughts and prayers! I can understand how frustrating it is not to have a diagnosis because I have a similar problem, but please know that all of us on the Forum are here for you!
Feel better soon!
Thanks everybody, it's good to get to talk to people who can relate.. I'm outside chattanooga, tn MARYCAIN.. do you know the names of any good rhematolgist in Nashville cause i'd be willing to travel cause there are only 2 in my area that are in the same office together and i've seen them both.. their very short with me and really rude so i'd be nice to see somebody different. And to everyone else.. i have talked to my primary care doc. and he is clueless about lupus and i'm in the process of gettin that doc. changed too..thanks again ya'll
If you are TN, close to memphis...Go to Dr. Caballero (901) 751-9997 He is just a regular family doctor but he's vey familiar with Lupus and he'll send you in the right direction. If you want a Rheum with sympathy and good bedside manner DON'T got to Dr. Chapman. When we first thought I had lupus and she did the test, they came back Neg as they usually do, and she actually called me a liar and told me there was nothing wrong with me. Any hoo. You do need to see someone right away. And Dr Cab can help you, send you to the right docs people that will listen and take you seriously