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Old 09-09-2009, 11:20 AM   #1
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Original DX of SLE 5 years ago now includes....

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?

Last edited by Gypsylady; 09-09-2009 at 11:22 AM. Reason: forgot to add

 
Old 09-09-2009, 03:55 PM   #2
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Re: Original DX of SLE 5 years ago now includes....

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.

 
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Old 09-10-2009, 08:27 AM   #3
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Re: Original DX of SLE 5 years ago now includes....

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

 
Old 09-10-2009, 02:05 PM   #4
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Re: Original DX of SLE 5 years ago now includes....

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.....

 
Old 09-10-2009, 05:11 PM   #5
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Re: Original DX of SLE 5 years ago now includes....

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

 
Old 09-10-2009, 06:14 PM   #6
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Re: Original DX of SLE 5 years ago now includes....

i gypsy. i have a wonderful rheumy. sorry you don't have access to good care. over the years i've fired many doctors because of incompetence or because i didn't like the way i was treated. luckily my rheumy has a network of great specialists that i hooked up with so now i'm ready for most things.

what infuriates me is the priorities of the medical field. today i heard on the news that there is a dna test for predicting hair loss. now i know people get weird about hair loss but give me a break....a test for lupus seems to be more important. or the new med to grow eyelashes....who cares????

 
Old 09-11-2009, 06:14 AM   #7
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Re: Original DX of SLE 5 years ago now includes....

Gypsylady, the Dr. Daniel Wallace hardcover discusses Sjogren's at length. Also UCTD vs. MCTD vs. standalone lupus vs. a whole raft of other things. It also has an index at the back, to get you straight to the topics you need.

I understand your frustration, believe me. I saw gastros for 20+ years for severe GI problems. Then 6+ local dermies for my rashes, which included 2 deep-punch biopsies. The dermies blew the biopsies, by not ordering immune stain tests.

That said, all we can do is keep trying! I really recommend the Wallace book. My take is that no dr. has the time it takes to walk us thru the basics, because there are too many new concepts to convey. Additionally, the language they're FORCED to use flies right over our heads, UNLESS we've read some. I think we have to meet them part way, by reading, is what I'm saying. Sending you my best wishes, Vee

 
Old 09-12-2009, 08:36 AM   #8
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Re: Original DX of SLE 5 years ago now includes....

LOL a DNA test for predicting hairloss....now that is a scientific breakthrough in the medical field....I wonder if people (the vain ones) will run off to the clinics to get this done?? I do agree with you that a DNA test for lupus would be more of a breakthrough!!

 
Old 09-12-2009, 08:43 AM   #9
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Re: Original DX of SLE 5 years ago now includes....

Quote:
Originally Posted by VeeJ View Post
Gypsylady, the Dr. Daniel Wallace hardcover discusses Sjogren's at length. Also UCTD vs. MCTD vs. standalone lupus vs. a whole raft of other things. It also has an index at the back, to get you straight to the topics you need.

I understand your frustration, believe me. I saw gastros for 20+ years for severe GI problems. Then 6+ local dermies for my rashes, which included 2 deep-punch biopsies. The dermies blew the biopsies, by not ordering immune stain tests.

That said, all we can do is keep trying! I really recommend the Wallace book. My take is that no dr. has the time it takes to walk us thru the basics, because there are too many new concepts to convey. Additionally, the language they're FORCED to use flies right over our heads, UNLESS we've read some. I think we have to meet them part way, by reading, is what I'm saying. Sending you my best wishes, Vee
TY Veej, going to get that book by Wallace....I soooo appreciate your advice....I do agree with you that patients should be educating themselves on their conditions & I will be following that advice by reading more about my illness....I know that by reading more about this auto-immune disorder I will likely have more questions for the Doc....but they never have the time to answer them....what we need is a Doctor and a Pharmasist on call on this site that can answer our questions.... right....like that will transpire....LOL....take care of yourself

 
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