Things keep getting worse, now it might be an autoimmune disorder
#178038 - 05/10/05 02:51 PM
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Vicam
Reged: 02/24/04
Posts: 1955
Loc: Ontario, Canada
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Hey Guys,
I'm having a tough day. Things with me just seem to be getting worse, that vasculitis rash has been spreading and the swelling and blueness in my feet/ankles just keeps getting worse, to the point where now I've been told I have to stay off my feet and keep them elevated.
My docs at a total loss, he and a bunch of residents were all examining me because I'm an "interesting" case, but none of them had any suggestions. I have to wait until the 18th when I've got an appointment with a specialist (I hate waiting!)
And now I've got terrible pains in my lower legs/ankles as well as joint pain in my wrists, elbows and shoulders! I feel like I'm totally falling apart.
The doctors I saw today indicated that they think it may be some sort of an autoimmune disorder and that may be why I've been plagued with so many problems over the last few years. So, we're looking at evaluating/ruling out things like Lupus, Rheumatoid Arthritis and Sjorens, although I think they're leaning towards Sjorens because of my eye and throat problems.
So, I'm stuck waiting and worrying  I'm trying not too but it's hard when everytime I look at my legs I'm reminded that something isn't right.
sorry to be venting...I just have to share it with someone. Have any of you guys had any experience with auto-immune disorders?
Thanks!
Kelly
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No experience with that... I just wanted to offer some {{{{{HUGS}}}}}} and let you know I'll be praying for you.
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Knowledge is power.
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Have you tried seeing a 'very good' naturopathic doctor? by very good I don't mean one with just a weekend diploma but someone with an ND qualification that has studied for many years. it may take some asking around (and I know you have little energy with all your suffering) but it may really turn your life around. please think about it. I really hope this all goes away for you.
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Feel the fear and do it anyway!
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Oh sweetie, when it rains it pours, huh?!   I'm so sorry you are going through all of this. I don't know anything about the auto-immune disorders you mentioned. although I was tested (blood work) for auto-immune disorders due to my fertility issues and thankfully they were negative.
I just don't get why you have to wait so long to see the specialist!! It seems like your current dr could call them and get it moved you! Hang in there, vent whenever you need to, we are here for you! Lots of love and hugs!
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Taking it one day at a time.....
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Kelly I am so sorry that have to suffer. I wish I could reach through the computer screen and give you a hug, but technology hasn't allowed us to do that yet. 
You are in my prayers and wish you the best treatment and care you can get.
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Hi Kelly,
My mom has lupus, and has had a number of the problems you've described. Rashes, numbness/loss of color in hands and feet, eye problems...etc. If someone didn't know her, and heard her talk of her myriad of problems, they might think she was hypochondriac!! She also has hyperthyroidism.
That being said, her lupus is under control. Not sure what medication she is on (I can ask), but her life is good, and I don't think the lupus is something she even thinks about on a daily basis. Not any one of her "problems" is life threatening, it's just that all added together they can be a bit much, especially when she's have a "flare", but for the most part it's under control and she's healthy.
Good luck to you, I hope you get a diagnosis soon, so at least you can start whatever treatment the doctors feel is appropriate for you. The not knowing is the WORST.
Ginger
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Kelly
#178228 - 05/11/05 09:02 AM
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cailin
Reged: 08/12/04
Posts: 3563
Loc: Dublin, Ireland
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Sorry to hear that you are still sick, and without a firm diagnosis.
Haven't anything to offer on autoimmune disorders, but like the others wanted to send you hugs.
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S.
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Hi Kelly,
Crohn's is an auto-immune disorder. You'd actually be surprised at how much more common they've become (unfortunately). The only good thing about thier spread is that research has been more effective and there's more funding floating around for good research, so the drugs have gotten much better. For now, I am glad that your doctors are finally looking at this more closely and perhaps they will find something to help! We all hope so muchly!!  Keep us updated and feel free to ask more questions.
Min
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Thanks for the info. I had actually forgotten that Crohn's is an auto-immune disorder as well. When I had my colonoscopy last year they ruled out Crohn's so at least that's good
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Glad to hear that your mom is managing her lupus ok. I just find it kinda scary, because although I know you can often manage these diseases, complications can arise that can be hard to deal with (although I suppose that's true of anything in life). I'm glad to hear of someone who's dealing with it and living a normal life though That's encouraging!
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