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Old 09-22-2003, 02:41 PM   #1
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Location: Coon Rapids, MN, USA
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Post Looking for a diagnosis, any ideas?

Hello everyone! I was hoping some of you could take the time to listen to my story and let me know what you think. About 5 years ago, I started having symptoms. Swollen/Stiff/Red/Warm joints. Also Sore and stiff and sometimes swollen and red muscles. Also these weird nodules under the skin on my hand and feet (I was told it may be pressure urticaria – a form of hives) These symptoms come and go and have gotten progressively worse over the last 5 years. I am now to the point where I am feeling disabled. I have yet to get a definitive diagnosis. I have had lots of blood work that my doctors say don’t really lead to anything but Rheumatoid Arthritis, but that doesn’t explain all of the symptoms so they think it MAY be Lupus or some other connective tissue/autoimmune disease. The following tests have been positive/abnormal…..ANA, cardiolipid antibodies, Rheumatoid Factor, C4 complement, protein in my blood is high, sed rate is high. Anti JO antibodies was negative, RNP was negative, DNA antibodies was negative, sjogrens tests were negative. That is all I can remember off the top of my head.

So for those of you diagnosed with Lupus….how was your diagnosis made? What tests were positive or symptoms did you have?

Thanks a lot,

Penny

 
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Old 09-22-2003, 10:51 PM   #2
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Hi Penny
Your right across the river from me, is that too crazy or what! Maybe it's Mercy hospital there making us sick! Ahahaha...J/K!
As for the tests to identify Lupus, you would think after 20 years I would know but I don't other than I know for positive that the (F)ANA profile is real important in making a diagnosis for it and from what you are describing it certainly sounds like Lupus to me. As for the other tests, they all sound like the routine blood tests they take for me but I never pay any attention to it other than the doc says so your not feeling well, your lupus is giving you trouble...I just don't pay any attention and haven't for years. Just take the blood and leave me be! LOL...I don't take any medications and have vehemently refused because I don't want side effects, it's bad enough to deal with the Lupus itself and all of it's side effects you know. The last few years I have had trouble with my right kidney and so they run tests more often now but overall I do pretty good sticking to a strict diet closely resembling vegan and no chemicals in my home for cleaning or on my body. That's the best advice I have for those who have Lupus, take good care of your body, treat it kind and don't stress out...that is the hardest part really.....staying low key and de-stressing all the time. One big exciting day can equal a few days in bed, that's the hard part, it's not just bad stress that taxes the system, but good stress too...a cold, a flu, a day at the zoo, can all add up to a flare and then other times we can go for weeks and feel fine, I won't go as far to say perfectly fine because it's not that fine but as fine as we can feel and that feels great even knowing, we acclimate and get use to those different levels of "fine" and welcome them like the sun...lol
Stay warm there, it's starting to cool down considerably here in Minnesota. I sure hope you get a better answer, find a different doctor if you are just getting the run around on this. You aren't by chance seeing a rheumatologist in Coon Rapids are you? I had a horrible experience with one of those docs over there and never went back..I even scrunched up a prescription and threw it on the table and told him I didn't need that but wanted to know how to manage the Lupus...he wanted to give me a narcotic!!! I was sooooo appalled!! Well that was about 12 years ago, maybe that nastey little man went away! ha!!


 
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Old 09-23-2003, 07:57 AM   #3
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I did see one in Coon Rapids, and this is really funny but, I actually ended up ripping up my work restrictions paper and walking out. (I wanted time off work, and he wouldn't sign the paper, now I am going to have to quit my job because the pain is so bad) Was the one you saw at Allina? I am not going back, He thought all I had was fibromyalgia and hives and referred me to a dermatologist. I am now seeing a derm at the U who is the one who ordered all those labs and thinks I may have Lupus. He wants to keep following me, and even though he has run more tests than the rheum ever did, I feel like I should find a rheumatologist, since that is what most of my problems are. Are you in Brooklyn Park? Small world.

Penny

 
Old 09-23-2003, 11:36 AM   #4
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Hi Penny,
Yes, it was Allina! eiyiyi!! I'm glad to hear you are working with a doc at the U, better route for sure. A good doctor will run the right blood tests and do an overall profile on your symptoms to properly determine what exactly is going on. Penny, those hives! oh my, those are horrible and it is a sign that your immune system is reacting or fighting something, which is very much a part of Lupus profile. Hives at least show your immune system is working but after being in that state for too long then it doesn't fight very good anymore and you don't get hives you just get so sick cuz your body has tried so hard to take care of the offender but it doesn't have any fight left in it., which is what happens to me now....and as I said, I cut out all the chemicals from my home and personal care products. The very first year of this disease I had hives covering under my arms all the way down the side of my body on both sides and on my thighs and down to my knees...horrible!! I have never been able to work with this, if I had I wouldn't hold the job very long as they would fire me from continual absence! ...I have done occassional work for my husband and tried a few jobs but just couldn't do it with all the allergies to the chemicals and perfumes people wear. The achiness is bad enough you know! lol.....
I live in Champlin!! Yes, what a small world indeed!!
Overall when you do get a proper diagnosis, you will at least be able to relax some as I know how stressful it is not to know what is happening to our bodies, but if you can try to de-stress and take it really easy and smile lots, it truly helps as simple as it sounds. It gets easier to live with when others around you understand what you are dealing with. And being women when we lose some of our energy....we feel guilty because we love to do things for others...well anyhow, don't feel that way is what I am saying...please keep us posted on your diagnosis.

 
Old 10-01-2003, 03:40 PM   #5
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Location: Coon Rapids, MN, USA
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PennyKandy HB User
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Hey Azurite....Any tips on a good Rheumatologist around here? I tried to go back to the Allina doc out of desperation and thinking he might be able to get me in since I was a current patient....Can you believe the first opening they had FOR A CURRENT PATIENT was December 15th!!!!!!!! So I am trying to find a new one....Any that you have found to be good???

Thanks

 
Old 10-06-2003, 01:32 PM   #6
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I just had to jump in, I am also from MN. I live a little west of you. I am in Big Lake. Been to Mercy too many times, LOL. I am still in the process of diagnosing whatever it is I have. My symptoms are Rhynauds syndrom, mouth ulcers, pleurisy, terrible joint pain in my knuckles and knees. I have had many xrays showing no arthritis, so my GP did blood work that turned up high Rheumatoid factor, ANA that was 1:320 now is 1:160, positive anit-smooth muscle antibody, and positive anti-thyroid antibody. So she concluded it is a rheumatological disease and now I have to wait several months just for an appt. with a rheumatologist and just live with this until then. Talk about stress!!! UGH! Everything I read points to lupus but who knows. Anyone have any other ideas?!?

Missy

 
Old 10-08-2003, 10:10 PM   #7
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AngelaA HB User
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I'm no expert on ANA, but if you are positive for thyroid antibodies that can only mean one thing ... Hashimoto's disease... or a lab error.

 
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