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    questionable lupus ?
    avatar
    gigiandpops posted:
    I have seen 3 rhumeys now. my 3rd being seen with today. 4 yrs ago my first rhumey ran test ANA was neg but have had most of criteria symptoms for almost 25 yrs. he dx me as undiff connective tissue disease which he told me he firmly believed it was lupus then. I didnt like the way he made me feel as far as his bed side manners made me really upset , however, he started me on plaquenil and prednisone. ok...I took it for a few wks, did research on the plaquineil and the side effects scared the hell out of me. especailly the one on the eye sight. I stopped it! still feeling horrible and went an got a referral to see another rhumey. after telling him what the first rhumey told me about his thoughts, this rhumey shot down the first rhumey. are you with me so far??? he bad mouthed the first rhumey, said rhumeys around here are too quick to dx lupus. I immediatly started not likeing him. I gave him a try. did blood work again vit D levels and so forth. well D level was down to a 6. even with all of the symptoms I had and not changing to any better, he continued to tell me it was still the fibro. I told him this is a completely differant pain and Im nauseous and throwing up all the time. feel like crap fluish all the time, chronic fatique still after all these yrs, thyroid always comes back low but within normal range. sick of this !! I feel like Im getn the run around. this rhumey is too arrogant. he is too complacint. wrote me script for D 2 and I added D3. also take B12 shots weekly. Ive read and been told that you dont necessarily will have positive ANA to have lupus. when Im in the sun an heat usually with in 30 min or so I am down to barely walking, I feel ill...literally flu like ill strongly from the sun. I have rashes on chest nexk sometimes on arms. rash on face has been very eveident this summer. Im stiff as a board most days pain all the time swelling in hands feet and calves at times, I feel like the pillsbury dough boy, Ive gained about 50 pds when I was on lyrica for fibro pain and the list just keeps going. IBS/Diverticulitis , even dry eyes sinusis .dry mouth dry scratching eyes out they itch soo much trouble swallowing food, already have had throat dialated once this yr. need I say everything?? today I seen my 3rd rhumey, he came in the room and says "what makes you think you have lupus"? after me giving him a typed out 6 pages of medical history and dx of first rhumey. he did see me but a few minutes and said " I dont think its lupus at all! and I dont think its a connective tissue disease either! I think its the fibro"! I stopped him and said NO! this pain and stiffness is totally differant! I was pissed!!! he was arrogant non compassionate what so ever! I was in tears when he left the room. the hubs was with me. my pulse rate was 140 today! it usually stays around 100...I know it stays HI. and to beat it all I have stage 3 kidney disease. he came back in the room gave me about 6 pages of paper with all blood work and xrays to be done. said IF test come back positive he would call to intervine if I didnt hear from them the results would be sent to my PCP! I thought to myself IM taking my insurance money to some one who will be nice and compassionate. he did not offer to treat the fibro pain nor refer me to a nephrologists which is what I wanted for my kidneys. Ive been pissed all evening!!!! I think these DR's are SCARED to dx as lupus! does any one have any idea why??? its like there scared to death of it. I dont get it! whats the freakin deal??? I would luv to know! any input?? thx gigi
    Reply
     
    avatar
    leecat41 responded:
    wow! I'm so sorry you are going through this!
    To do what is right is not always easy, to do what is easy is not always right.


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