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upstater

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Posts: 221
 #1 
I am not sure why my posts from today are upsetting folks.

Just to do a formal into, I was diagnosed in February with discoid lupus and undifferentiated connective tissue disease. So....I have some symptoms and some labs that are off, but nothing that fits systemically into one category. I guess that's OK....maybe things will stay undifferentiated from a systemic standpoint, or maybe things will progress. I have no idea.

I was hoping to connect with some people who might have some shared experiences.....bounce ideas.....and not feel so....alone.

I have chosen not to share any of this with my family - other than my husband - and have only mentioned it to one friend....and my boss at work (because of time needed off for numerous appts I've had). 

I know several of you are very close and have a lot of shared history. I don't want to interfere with any of that, but was hoping there was room here for someone new.
Cakelady

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 #2 
Up the tricky part with lupus is no one is the same. What I experience or what issues I have with lupus others don't. What works for some don't work for others

Lupus is called the cruel mystery for a reason it is also called the great mimicer for a reason. There are between 60-80 different AI's out there that mimic lupus. It can be frustrating for the patient and the doctor and a lot of times our labs don't match up with how we are feeling.

You need to advacate for you. You need to research the doctors you are seeing. Not all rhemys treat people with lupus and unfortunately you might have to drive an Hour or 2 away you need to keep a note book of all your symtoms and any questions you have so when you go to the doctor you have them ready. Also keep a copy of all your labs and any test they run.

This is a sisterhood so to speak and yes some of us are close very close. We used to be able to PM people but meg got that taken away from us so we are very leery about new people and telling our story. I have found that people who don't have lupus but think they due come on here and to get information to take back to there doctor so they can get an official dx.

I have been battling migraines and just to walk from my front room to the the bathroom takes 30 minutes. So I am not in the mood for games

Robin and bun and a few others on here I consider family. When my dad died Robin knew within minutes if me finding out. I would trust my life to her

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The bond that links our true family is not one of blood, but one of respect and joy in each other's life
upstater

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 #3 
I am certainly not here to play games....only to learn/share. And I am definitely not fishing for a SLE dx. 

I do a lot of research from reputable sites so I can be an advocate and I also want to understand as much as I can. After a bad experience locally, I do travel several hours to a major rheumatological center and do trust that I am in competent hands.

I'm truly sorry you are not feeling well....
judynurse

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 #4 
Good news for me! Negative for lupus, sjorgrens, tests do show some type of auto immune disease. I can tell by pains I have some type of arthritis, & already diagnosed with very soft, brittle bones. Glad it is not lupus.
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