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Sandra
06-10-2008, 12:33 PM
Hello, i'm new here, hope you don't mind the typo's. I'm 40 something and have a wonky immune system and have a variety of names to go with it. Hypothyroid, addison's disease, AI early menopause, primary biliary cirrhosis, and sjogren's. Lupus is a suspect and who knows if I will ever get a positive diagnosis. I would bet a dollar to a doughnut that if i don't have a diagnosis that I do have lupus in some way shape or form.
Have a hubbya and a springer spaniel, a nice home that I love and run a home office from it. Love to garden, bike, swim, walk.
I hurt allot and struggle with that but like to keep active if I can as it helps with the pain and helps me to stay positive. Not too much medical support where I live which makes things difficult. But I have a rheumy that's ok not too far away.

sits_inthe_corner
06-10-2008, 01:54 PM
Hi Sandra...and a big welcome :)

I'm in lupus limbo myself. Family doctor thinks yes, sent to a rhuemy who thinks lupus is just a catch all term that doctor's use when they don't know what's wrong with you.

As you may have guessed I don't get along well with her...but it's very difficult to get switched to another rhuemy so I'm stuck with her for a while.

Dollar's to donuts...now there's a term I don't hear very often...you wouldn't happen to be in canada would you? I'm in Nova Scotia.

As for the typos...well I don't know, mean we're a pretty picky bunch hahahaha NOT.

We are all fluent in typo, not to worry. What sorts of things are you doing to manage your pain?

Saysusie
06-10-2008, 02:43 PM
Hi Sandra :D
Welcome to our family. I'm glad that you found us and that you decided to join us. I know how frustrating it must be waiting for a diagnosis that may or may not ever come. I would not be surprised if you do get a Lupus diagnosis since many of the illnesses that you have happen to be illnesses that overlap with Lupus. Myself, I have Lupus, Fibromyalgia, Raynaud's Syndrome, IBS, TMJ, and others!
If you do, or do not get a diagnosis, you are still very welcome here and we hope that we can give you the support, information, comfort and understanding that you need!

Again.....Welcome
Peace and Blessings
Saysusie

Sandra
06-10-2008, 03:03 PM
Thanks, i think it best I be the judge too. I am not a stranger to AI stuff and only I know my own body. Oh yea I forgot fibromyalgia...she thinks....I have a consistantly high ESR about 3X the normal. My rheumy did monthly tests for about a year and as I mentioned she doesn't think it's lupus, and I am RF negative. :?: I am anti-SM and anti-Ro. Plus some other oddities that i don't really understand. I really don't need a name at this point anyway, I have years of experiance living it. Hurt is hurt and caution is caution and knowledge is the key to it all.
I am Canadian. :D that is for sits_in_the_corner..Ontario in fact and I sure do understand the dr shortage...I actually won my GP in a lottery...I kid you not. as far as specialists usually requires a 2 hour drive.
The sun thing is a real problem I will continue to try and figure it out and refer back to any new ideas. Thanks Sandra

laurid8967
06-10-2008, 05:37 PM
Hi Sandra and welcome! I am pretty new here too, and have found this site to be awesome. I give you an enormous amount of credit for the attitude regarding the "lupuie in limbo" thing. I would have saved myself alot of negative feelings that only made my problem worse, had I stuck to the attitude you have. I am in "limbo" myself with Dx of FMS, post viral symdrome, all kinds of things, and MAYBE sero-negative lupus. Like you, I dont care about a name at this point, and am very grateful this new doc of mine is treating me with steroids and Plaquenil at this time. I also have a high sed rate, and always a high CRP (both inflammation markers), low C3/C4 (?) levels, anemic, seizures, etc. blah, blah, blah...
OK - Having lived in Boston my whole life, I am stumped at what you gals were talking about concerning lack of doctors. Are you only allowed to see one in Canada? I know everyone gets health care there (which is great - NOT SO HERE), and is that why there is a wait? I am very fortunate to have great health ins. (even for US! - hsuband in union), and I can see any doctor I want. I dont even need a refrerral. I can find a doctor anyway I want, and call and make an appt. I only JUST started to pay a co-pay of $10!! You know, you would think with that kind of health care, I would have a Dx, the best treatment ever, HOWEVER, what Ive found is that oftentimes - the better the doctor, the more cases they have seen, and the more severe cases they have seen - so sometimes, unless you are DYING...its not a big deal to them. Does that make sense? For instance, the treatment I got when I first got sick was top-notch, second to none, literally world-renowned specialists in my room at all times. This was at New England Medical. I was eight months pregnant, and developed what was initially thought of as pneumonia. Though my lungs werent too bad, they admitted me because I was 32 weeks pregnant. Well, within a day and a half, I suffered a "rapid deterioration", and this viral pneumonia put me into respitory failure. The problem was, they counldt identify the virus that was causing it, thus, coulndt treat me. I developed ARDS, and my family was given "the news" that I probably wouldnt make the night. This went on for days, me in an induced coma, on a respirator eight months pregnant. There were infectious disease docs, autoimmunte docs (they originally thought lupus), respitory and OB/GYN - nonstop. They finally tried an experimental anti-viral, and - low and behold - my lungs started to clear. My baby was fine (10 year-old Jack) and I delivered him two months later - overdue!! Complicated delivery as well, but, you get the picture. Because I had such a RARE virus (on last check, I am still in the books there!), my care was unbelievable. But when I went back to their arthritis/rheumatology dept a couple years later, when I had pain, fatigue, lots of neuro symptoms - they said "Yeah, maybe fibromyalgia. Its not lupus, your ANA is negative" COnsidering what my body had been through, dont you think they would have thought of something a little more Unique? lolol !! I mean c'mon! Anyway, Ive been to Brigham and Womens, NEMC, Boston Medical - everywhere BUT... Mass General, which is considered the best of the best (Harvard and all...) Anyway, Im sorry I got into such a long tangient!! THats my story (the beginning, anyhow - stay tuned for more to come - next season on As Lauri's Illness Turns) OK, yeah, feeling a little crazy due to the roids!!
OK, sooooo welcome, keep posting - I learn so much from all of you!!
Lauri

Saysusie
06-11-2008, 08:41 AM
Lauri...you are a hoot!! :lol:

Peace and Blessings
Saysusie