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Not Lupus so now what
by petwoman, Jul 14, 2009 07:58AM
I was told now by the Rheumy that he thinks I dont have Lupus but another Auto immune disorder. He does not know which one and continues to run test. I have a small amount of SSA, SSB, Smith Antibody, Sm/Rnp Anti, as well as very small amount of Double Strand DNA ab--I do not know what these all mean except I do know we are not suppose to have any Double Strand DNA show up in blood work. I do have Reynaud's that is for sure and I had my fingers turn blue in his office, so that there is no doubt about.
If anyone can help me understand what other immune disorders this might be I would appreciate it greatly. I have so many Lupus symptoms that I cannot believe it is not Lupus. I get the rash from the Sun, had 1 positive ANA and 1 neg, as well very low Vit D results. I have the aches, pains in fingers, toes, knees and back. Butterfly rash after the sun or even after a glass of wine. If anyone has any thoughts on this I would appreciate the feedback.
If anyone can help me understand what other immune disorders this might be I would appreciate it greatly. I have so many Lupus symptoms that I cannot believe it is not Lupus. I get the rash from the Sun, had 1 positive ANA and 1 neg, as well very low Vit D results. I have the aches, pains in fingers, toes, knees and back. Butterfly rash after the sun or even after a glass of wine. If anyone has any thoughts on this I would appreciate the feedback.
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Other symptoms of lupus are
hair falling out
sores in the mouth
joint pain w/ swelling
kidney disorders
neuological disorders
inflamation (inflammation) around the heart
inflamation (inflammation) around the lungs
fatigue
raynauld's could be (is also found in fibromyalgia)
weight loss (loss of appetitie)
sun sensitive
muscle weakness
These are a few that come to mind. I've done so much research on this, but it is all on my other computer which is not working anymore.
How long have you been feeling bad? It sounds like you have done some research on lupus. If so, how many of the lupus criteria do you have? There are 11 criteria, you need 4 in order to get dx with lupus. Even then drs. seem to be hesitant.
If you think you have lupus, it would be wisdom to go ahead and get some life insurance. You won't be able to after a dx is handed down.
Praying for you. Kara
Thanks for replying, My ANA + was 1:160 and speckled. I did get a call from the yesterday and he stated now it could still be lupus because even though the ANA came back Negative my PTT La Screen was high and also my DNA ds antibody was positive--all the other levels came back neg or very sm amount that they consider negative. My platelet level has dropped by still in normal range and my Vit D was very low so I am back on supplements for that as well.
As far as symptoms I have a whole list of them, the sunrash, fevers on/off, body aches especially hands, feet, knees and back, sores in mouth, hair falling out(I had gone to Dermatologist for this thinking it was something else going on), Reynauds which I had happen in the Dr's office because it was so cold in there! Let's not forget the fatigue!!
So I have alot of the criteria for lupus guess it just takes awhile to peice it all together.
My uncle died from Scleroderma and my sister also has a autoimmune disease with her thryroid--so it is a waiting game for sure.
I have life insurance from before I got sick, and we were in process of getting a higher amount of it for both my husband and me when I was denied because the dr could not rule out Lupus yet :(
Oh well--I am leaving for DisneyWorld tomorrow morning so cannot complain to much!
Anyway, back to business. OK Speckled and (La) SS-B indicates Sjogren's. Do yo have dry eyes and mouth? I'm not real up on Sjogren's.
ds-DNA is indicitive of SLE. So your dr. is wise to keep monitoring you. Maybe your doc would want to try plaquinel or something to see if it helps. It takes plaquinel a month or two to see the full benefit.
Hav fun at Disney World. STAY OUT OF THE SUN!
Oh, by the way. Before they do another ANA, ect. Spend some time in the sun right before your lab. If you have lupus, it will cause the ANA to jump up and help with the dx. Trust me on this.
God bless, Kara
I already have my big floppy hat ready to sit under the umbrella while hubby and kids go soaking in the pool. (I am always cold, so find the pool very uninviting)
I have heard that about the sun and making your ANA go up--I will try that next time--I go back in September I think on the 23rd. This will be my 3rd round of blood work in 6 mths so I am hoping for a diagnosis soon. I am going to ask him about the plaquinel for the pain--even if it takes a couple of months to work better than Prednisone all the time
Have a good one and see everyone on here when I get back next weekend...
God Bless