View Full Version : Calling all armchair MDs
Apr. 7, 2012, 09:26 PM
Ok, I' m not really looking for a diagnosis, I am actually working with a rheumy. I am curious if anyone has had similar issues and how it turned out for them.....
I have delt with very tender hand joints for years, was originally dx' d osteoarthritis . Very clean x rays, new rhuemy says not osteo.
Blood work shows severe vit D deficiency, titer of 6,all blood work is ok (ANA went from 1:80 to 1:40)
Rhuemy says fibro (I have no tender point- just joint pain and crappy sleep)!
Start on amyltrptoline (sp) and vit d, md thinks possible sjogrens (sp) due to previously diagnosed dry eye.
Insights, commiseration, alternate diagnoses?
Thanks for reading
Apr. 7, 2012, 09:35 PM
Mostly what I have for you are ((hugs)) and jingles that you can figure it all out.
I've had ongoing issues for about the last 10 years and it looks like it's Lupus though my blood levels are normal. But I have the symptoms and after time, they've just given up on the blood work and said "you have lupus, let's treat it like that". Only....there's not much to treat. When I have flare ups I do steroids, else I try to manage it by getting good sleep and taking care of myself.
I have a couple of friends w/ fibro and it's similar.
One thing a few of us has done is get on the reliv supps. They really seem to help and while I'm not a big nutraceutical fan, I'm liking this stuff!
Apr. 7, 2012, 09:49 PM
It is unlikely, but I thought I'd throw it out there -- could you be sensitive to gluten? It turns out I am, and I've had arthritis pain in my hips for years; then developed Reynaud's in my feet. However I did not have arthritis. I gave up gluten (because of the digestive symptoms I had) and found that over about six months my hip pain has almost disappeared. Same with the Reynaud's.
The best book about gluten issues is called "Wheatbelly" which is highly readable but also lays out all the science and cites tons of studies.
It wouldn't hurt you to give it up for a couple of weeks and see if you notice any difference.
Apr. 7, 2012, 09:53 PM
Thank you, we have looked at lupus, and when I have been on prednisone for soft tissue injuries I have really felt good,
I know part of it has to be the Vit D, but we can't do a titer for two more months. Low is 25, my md has nerver had a patient as low as mine ( I like to be exceptional in non helpful ways)
It does help to know others deal with the same frustrations.
Jingles to you too- hear's good wishes that your lupus will never progress.
Apr. 7, 2012, 10:09 PM
Ever been tested for Lyme disease?
Apr. 7, 2012, 11:12 PM
Definitely try going off Gluten! I was diagnosed with Juvenile Rheumatoid Arthritis when I was 16. A co-worker of mine this winter was discussing about how when she stopped eating gluten (she had an allergy) her arthritis was much better. I started and within days I felt like a whole new person! I have more energy, less achey, even the tendonitis in my shoulder felt 100 times better.
I have started eating a little gluten but try to avoid it as much as possible. My school doesnt offer a great meal-plan so a poor college kid cant be too picky ;) But I can definitely feel the difference after eating a big pasta dinner (my FAV!) vs. something gluten free.
Apr. 9, 2012, 10:41 AM
I have RA and with many autoimmune type issues finding the correct diagnoses is incredibly hard. Hopefully you can keep working with a rheumy and figure out what works for you.
Apr. 10, 2012, 07:23 AM
These symptoms could also fall under Ehlers Danlos. Here is a link to check out: