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Medical Forum / Diseases and Disorders / Lupus / April 2007Lupus
Twenty years ago I was diagnosed with Lupus. After two years, it was RA, then it was Psoriatic Arthritis, then Sjogrens. Today it is Lupus again. So I am listening to all of this, trying not to cry and all of the while I do not hear what the doctor has to say anymore, I do not hear anything and I can not see her face. It is an unrecognizable blurb. If you have read my post, thanks...... Somehow, I guess I needed that. Kristin It does get to be confusing, doesn't it? And when my rheum. doc said that "maybe you didn't have lupus after all" 12 years after he dx'd me first clinically and then confirmed by blood test and later by a punch biopsy of my skin I near about screamed! But the reality is, in MNSHO, we have an auto immune condition and the labels just describe various aspects as they occur and take center stage, so to speak. Mine include: SLE, Diabetes II, Sjogren's, Autoimmune Pancreatic Insufficiency (Chronic Pancreatitis), GERD, Gastroparesis, Hypertension, Raynaud's Phenomenon, swallowing disorder, autoimmune neuropathy (peripheral & central). We often have a lot of reactions to meds and true allergies. Our skin is subject to rashes, change of color, inappropriate sensations of hot & cold, Sometimes we smell things that aren't there. Like cooking stove gas, shoe polish, animal waste. Our eyes hurt, loud noises hurt. We get so exhausted that we can't find words to tell our loved ones or our bosses what's happening. And I think it's all one big disease with a lot of names. Nancy F, SoCal Christ, Chorus, Cats, Computers > Twenty years ago I was diagnosed with Lupus. After two years, it was > RA, then it was Psoriatic Arthritis, then Sjogrens. Today it is Lupus [quoted text clipped - 7 lines] > > Kristin Kristin, I'm sorry that it was so devestating for you. I think as people we need labels to define things to feel comfortable, especially when it's happening to our bodies. But as Nancy said auto immune diseases fall under a large umbrella and as long as you are getting help with the problem, that's the important thing not what the problem is called, don't you think? My first rhuemie, labeled me as unspecified connective tissue disease for years and one day it was Lupus. My brother also has Lupus but I have a cousin with a rare kidney disease and my grandmother had debilitating rhuematoid arthritis. My rhuemie said that they are just different manifestations of the same disease. Each person is unique and I think autoimmune diseases affect each person uniquely as well. Best of luck! Jeanne > We often have a lot of reactions to meds and true allergies. Our skin is > subject to rashes, change of color, inappropriate sensations of hot & > cold, Sometimes we smell things that aren't there. Like cooking stove gas, > shoe polish, animal waste. For what it's worth, I've noticed weird smells, too, after I've had too much light. I almost had to leave a store tonight because of the skunk smell from their sporting-goods department (from the rubber in the new bike tires, I think). I'll heat up the oven and it will smell like it's leaking gas, which is *not* what I expect from an electric oven. And I wish that cooking meat would "only" smell like fertilizer! --Bill Thompson > > We often have a lot of reactions to meds and true allergies. Our skin is > > subject to rashes, change of color, inappropriate sensations of hot & [quoted text clipped - 10 lines] > > --Bill Thompson I have noticed the same weird smells but have always blamed it on my little pomerian dog and the outside skunks. ruth Krisitn, I have RA and Lupus.. have your docs maybe thought it might just be both? In Dr Wallace's book about Lupus. The Lupus Book : aguide for patients and their families / Daniel J Wallace MD the revised and expanded edition ISBN 0-19-513281-5 on pg. 169 he says something about having the criteria for both diseases and he calls this rhupus. Since similar drugs are used to treat both diseases then it is basically treated the same. Personally, I have had lupus flares and I have had RA flares.. I have had enough of them I can tell the difference. If you can start to document your symptoms and keep a diary of what is going on so you doc can evaluate what is happening to you so you can get a firm diagnoses. I hope this helps RhondaM. > Twenty years ago I was diagnosed with Lupus. After two years, it was > RA, then it was Psoriatic Arthritis, then Sjogrens. Today it is Lupus [quoted text clipped - 7 lines] > > Kristin > Krisitn, I have RA and Lupus.. have your docs maybe thought it might just be > both? In Dr Wallace's book about Lupus. The Lupus Book : aguide for patients [quoted text clipped - 20 lines] > > - Show quoted text - this could be a hard question but how can you tell the difference between a lupus flare, fibro flare etc........ Kristin I hear you on the blurb. Been there, see it too. Is all just a way of proving that we aren't perfect and have some issues, but doesnt everyone? Hugs...keep your chin up Peace For me when my lupus flare I get the rash and the spots.. when RA flare my hands and feet and legs swell > Twenty years ago I was diagnosed with Lupus. After two years, it was > RA, then it was Psoriatic Arthritis, then Sjogrens. Today it is Lupus [quoted text clipped - 7 lines] > > Kristin > For me when my lupus flare I get the rash and the spots.. when RA flare my > hands and feet and legs swell [quoted text clipped - 10 lines] > > > > Kristin Hi Rhonda and Kristin..... Lupus is such an exasperating problem because it seems like when one outbreak gets under control another one breaks out immediately. How about an old song called 'Cry me a river'. Sometimes tears really help Hope you both have better days soon.............ruth |
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