Author Topic: Not sure what this means  (Read 1701 times)

cari

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Not sure what this means
« on: May 13, 2015, 11:29:43 AM »
So I saw the rheumatologist today as well last the Sjogrens specialist. The specialist said that my ra/la (?) Tests are negative. My ANA shows immune antibodies, so there's an autoimmune response. My ENA panel is negative and so is my RA.

He said I might have Undifferentiated connective Tissue Disease. He is xraying my hands for inflammation, doing a lip biopsy and an ultrasound of my face and neck to check the glands and thyroid. He said that it might not develop further than it has already and sometimes these things just go into remission.

For some reason I'm feeling slightly more optimistic today :)


Deb 27

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Re: Not sure what this means
« Reply #1 on: May 13, 2015, 05:48:03 PM »
cari, it sounds like you have a good rheumatologist. How nice that you have a sjogrens specialist. These things can take a few years to develop and you do not have to have positive blood tests to have the disease. I had a positive ANA and high sed rate and those were the only tests positive. They never ordered a lip biopsy until about 2 months ago and it was positive. I was glad to have an answer. It took 6 years for my x rays to show RA.  I hope you get good news. In my case, I felt lousy and was happy to finally have an answer.
Sjogrens and RA,  Morphea (skin scleroderma), Hashimoto's, 
Nexium, synthroid, HRT, plaquenil,  Restasis, Maxi-tears supplement, L-glutathionne, CoQ10, folate, trintillex,  multi vitamin. lisinopril.

cari

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Re: Not sure what this means
« Reply #2 on: May 14, 2015, 04:27:24 AM »
The rheum. Said that you won't be diagnosed with primary sjogrens for 18 months to two years. He said and has always said that I'm at the early stages and it can go one of several ways: go into remission, stay as it is, develop into another autoimmune such as Lupus or just disappear ie go and not come back.

I went to see the sjogrens specialist. Not the above rheumatologist. He is doing the lip biopsy, x rays and ultrasound. He said that my symptoms so far are like sjogrens but could also be UCTD. 

My Rheumatoid Arthritis was negative, I found out the result yesterday. The only positive I have so far is my ANA. I of course also have the symptoms which are autoimmune symptoms. Because of my hormonal symptoms I'm having a comprehensive hormone set of blood tests done including cortisol.

I'm still unclear what I have but at least am in the process of diagnosis and am being treated for the symptoms I have.

Nancy_Drew

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Re: Not sure what this means
« Reply #3 on: September 20, 2021, 01:59:34 AM »
Cari, hi! If there?s any chance you see my reply, how are you today, in 2021? Any health and test updates? I have the same situation: Ana positive, ena negative

meirish

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Re: Not sure what this means
« Reply #4 on: September 20, 2021, 07:54:25 PM »
Cari, Sounds like you have a doctor that is doing tests that will be of some help. He may be right with his diagnosis and he may be wrong. I does make us feel better with a diagnosis and if they can be "for sure" with a diagnosis it is even better. However, the one thing that you said is really the point of all of our need for diagnosis. The need to be treated for our symptoms.

There are some patients who get a sjogrens diagnosis without severe symptoms that don't get any treatment. Often the symptoms of fatigue and body aching will decrease if a person is put on Hydroxychloroquin. I have had to stop my hydroxy several times when my old problem of reflux would increase. I had wait for reflux to improve a lot so would be off the Hydroxy for several months.I eventually learned a better dosage time that worked better for me. During this time I always thought that I couldn't tell the different being off the drug. Until some more time went by and the old fatigue, aching, joint pain reared its ugly head again.

Hydroxychloroquin is one of the first treatment of choice for sjogrens because of its anti-inflammatory effect. Hopefully you will continue to receive good treatment. Good luck. meirish