rhumy says - Lupus Message Board

shasha · 12-12-2002, 12:46 PM

Hi All,

I went to my app. today thinking I had already been diag. with Lupus.
Doc said my AnA went from a 160 to 320 , he said it was very high but my other blood work was normal. He said I still might not have Lupus. My symptoms are:
fatique, weakness, headaches, dizziness, nausea, joint pain, daily low grade fever, facial rash, hand rash both are very sensitive in sun and other unatural lighting, stiffness bigtime in the morning and everytime I get up after a rest, tingling and numbness, and the rhumy has diag. me with tendinitis in my shoulder, raynauds, and carpal tunel syndrome.

Do you think my Rhumy should have diag. me by now or since he only seen me a couple times maybe he does not want to rush into it. Is that how they are?
Do you think theres a chance its not Lupus. Do more blood test have to come positive(anti-double stranded DNA test)to have Lupus?
Thanks for taking the time to read this.
Sincerly, Sha

Hellokitty1973 · 12-12-2002, 01:10 PM

I would suggest getting a second opinion. Not that your current doctor is bad, but a lot of these auto-immune diseases overlap and can take time to diagnose. Sometimes a second opinion helps tremendously. I don't have Lupus (my cousin does), but I do have RA. What you are describing does sound like Lupus and I know you can have normal blood work at times.

Good luck!

TessDirect · 12-12-2002, 01:49 PM

Lupus is a very tough one to get a correct diagnosis on – and many of us have been “undiagnosed” when we are not having a flare - blood work is only a part of it. I have had it for 30 years and was first “misdiagnosed” with RA – start keeping a record of your own with any health abnormalities.
I read some of your other posts – it’s your body and this is not a dress rehearsal – no question is a stupid one – keep asking!!! (by the way Raynauds is definitely on most Lupus complaint lists) and be pro active in your own diagnosis and treatment plan – did you ask your Rheumy how many Lupus patients he has – just because he is a Rheumatologist doesn’t mean he is up on all the latest Lupus indicators and/or the best treatment plans!! No matter what you have first on your list should be eating better, also herbal remedies (no Echinacea!!), vitamin supplements (especially B’s) and exercise (“bodies in motion tend to stay in motion” will help a lot with the stiffness) – Lupus symptoms can vary in every individual, listen to your body and avoid those things that give you trouble of any kind!!!
Wishing you many pain free days
Tess

SusanM · 12-12-2002, 02:09 PM

I think technically you have to have one other abnormal blood test to meet criteria for lupus. ANA alone is not enough there has to be other abnormal lab suggesting autoimmunity.--I think--check diagnostic criteria. Susan

shasha · 12-13-2002, 07:51 AM

thankyou kitty, susan, and tess.
Tess, thank you for your valuable advice I'm 37 yrs old and up until a yr. ago I walked 2miles a day and now I'm lucky if I can get through 10min of floor exercise.
I do take good vitamins and am trying to eat better.
Do you or anyone find when you exercise even a little you feel like you ran miles?
Have a good day and God Bless
SHA,