Original DX of SLE 5 years ago now includes.... - Lupus Message Board

Gypsylady · 09-09-2009, 12:20 PM

Hypothyroid...Sjogren's Syndrome....MCTD....however, all my scope tests & biopsies came back negative for celiac disease or any other bowel disease or cancer TG!! I do have esophagealitis because of the gerd and acid reflux so now have to take nexium for a while....also now the Rheumie wants me to stay on the Plaquenil for long term maintenance 200 mgs 2/day....my ANA count is extremely high @1:2560, speckled pattern....extractable nuclear antibodies are abnormal with a strong positive titre for Sjogren's Syndrome and Type A and RNP antibody which favours the mixed connective tissue disease....well what next??? Now I'm depressed again on top of all this chronic illness crap....they make pills for that condition too my Rheumie told me.....oh yay I thought.....just keep me financing the pharmacutical industry

Anyone else on here have MCTD?

heidiclouser · 09-09-2009, 04:55 PM

i have MCTD although it now has a new name.....undifferentiated connective tissue disease. many of the symptoms of various autoimmune diseases overlap making treatment and diagnosis difficult. i have lupus, scleroderma, sjoegren's symdrome. i also have lymphoma from immunosuppresants, tmj, raynaud's and a partridge in a pear tree. And it seems they keep coming. I was dxed with lupus 15 years ago.

Gypsylady · 09-10-2009, 09:27 AM

Hi heidiclouser, geeze youve been through the mill too....all these DX's sure makes me wonder if the docs really have a clue or are they just intent on making us dependent on them & the pharmacutical industry....they say we have something, write a prescription, we take it, we get sicker, need surgery, end up with complications because of the drugs, does it seem like some sort of a conspiracy to you? sure does to me some days! very depressing, frustrating, confusing

Angie10 · 09-10-2009, 03:05 PM

Hi GypsyLady,

I have been with my third rheumatologist (yes, third) for over two years now. My first rheumie rushed me through a list of symptoms and stuck Lupus on me after looking at my blood work. The second rheumie was just rude and acted like I was wasting her time, so I am happily with my current rheumie who has labeled me with a "systematic rheumatic condition" because I don't fit enough of the criteria for Lupus and may lean towards Sjorgrens and RA.

I know it is frustrating, but I'm just wondering if you are with a doctor that takes time to hear what you have to say, to answer your questions, and to seem genuinely concerned with your well being. With all the different blood tests out there and with extensive, varying medical histories, it is not always easy to diagnose someone. I feel more comfortable with my doctor that would rather err on the side of caution, treat the symptoms, and see how things play out than to stick a label on my forwards, flood me with drugs, and call it a day.

I'm not sure about Canada, but can you look for another specialist if you aren't happy with the one you have? I'm just wondering if you could atleast get a second opinion.....

Gypsylady · 09-10-2009, 06:11 PM

Hi Angie10,
TY for your reply on here...3 Rheumies?? well I have only one option here in the town that I live or I could drive 2.5 hours to Winnipeg for a second opinion, that is not an option for me as I cannot drive and our bus system has been terminated here...no more greyhound service...unless something changes then I am stuck with the Rheumie that I have now...Sorry to hear that you have similar issues there too...do all specialists act like we are wasting their time & just hurry us out the door with a DX that we are just supposed to accept as gospel? Glad to hear that you have found one that you feel more comfortable with...maybe in time I will get to like this Doctor but as it stands right now I feel a bit like a cow...herded in, stuffed with drugs, herded out...he takes no time to listen...just expects me to listen & to follow his directions...come back in 3-6 months for another refill...ya I guess that I am just frustrated and not a compliant patient...anyways TY for your input & suggestions...it does help to know that we arent alone