Author Topic: On line physician speaker ANA  (Read 439 times)

irish

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On line physician speaker ANA
« on: May 24, 2019, 01:47:22 PM »
I just happened to watch a short little talk by a physician that deals with lupus patients. He really made sense. He said that when he does blood work he usually starts out slow and will do the first of the autoimmune blood work. If it is negative people are more likely to not have autoimmune....but this is not always true as many of us know.

The thing that really blew my mind was when he said people who have a slightly positive ANA have an autoimmune disease that is trying to do damage. He said that so many doctors will "watch" this ANA to see if it goes higher cause then they know that the patient is really sick. He figures treating early is the way to go.

The deal is that in the waiting time which can be months to years the patient has more damage to their body and becomes more ill. The patient needs to be treated early on when the autoimmune is just starting to do its damage. How many times have people on here said the doctor didn't do anything cause the ANA wasn't high enough to do serious damage.It felt good to have a doctor verify the seriousness of the slightly positive ANA.

I know that I had ANA checked for over 20 years and it didn't go positive til 2003 when it came back very high. I was having increasing damage all that time. Hopefully they will come up with more sensitive blood work that will help all the newer patients. Irish
« Last Edit: May 24, 2019, 06:56:57 PM by irish »

vrystaat

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Re: On line physician speaker ANA
« Reply #1 on: May 25, 2019, 08:53:41 AM »
Watching appears to be a universal problem.
It seems that there are 3 problems:
1) The autoimmune tests are not sensitive enough.
2) Rheumatologists and other MD's are loath to spend a lot of time thinking about the diagnosis in these rare disorders.
3) The Medical Community is surprisingly less than knowledgeable about Auto-immune diseases, especially Sjögren's Syndrome.
    This is the fault in Medical Education.
I have counted at least a few dozen cases of very long waits for a diagnosis. Ten years is not unusual.
A revolution in Medical care would be needed to fix this.
Sjogrens;Polymyositis;Polyneuropathy;Gastritis;GERD, Autonomic Neuropathy, Neurological complications, Trigeminal Neuralgia,Gamma 3 globulin low;Multiple infections;Brain fog; Ocular problems - blepharitis, scleritiis, dry eye,severe eye pain. Possible Inclusion body Myositis.Currently Endstage

Sharon

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Re: On line physician speaker ANA
« Reply #2 on: May 25, 2019, 01:17:38 PM »
I agree with both of you.
I'd like to add that my ANA began as "Intermediate"- meaning right on the border between positive and negative when I first began having symptoms. It was immediately dismissed and any questions I had concerning the fact that it was borderline and not negative were laughed off.
Even now with all my symptoms fully developed, zero tears and proof of RA irreversible joint damage it's only a low positive ANA.
Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
Orencia, Restasis, Paleo Diet, Vit. D & C, Ubiquinol 200mg, Omega 3...

irish

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Re: On line physician speaker ANA
« Reply #3 on: May 25, 2019, 10:40:17 PM »
The interesting thing about these tests is that we wait so darn long for them to turn positive and then we wait some more. I am also referring to the Sjogrens blood work another blood work that will be positive for certain people. We are all different in what turns positive and with our symptoms. These 2 factors also muddy the water.

I am getting worse and have these 5 autoimmune and a couple more somewhat under control immune deficiencies that I don't let down my guard over. I have been on some meds and can't tolerate them and just don't do well with the big gun meds. The IVIG does help my Myasthenia for which I am thankful. Doctors are really hesitant to try more of the big meds as I have some really strange stuff going on that is hard to follow and I react so much.

It would be nice if they could find some new meds that would treat the autoimmune diseases without almost killing us. Maybe someday.We sjogies are tough because we have to be!!!! Take care all. Irish

Deb 27

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Re: On line physician speaker ANA
« Reply #4 on: May 29, 2019, 07:03:31 AM »
Well, and some people are seronegative, what about us??? Now, originally I had a weakly positive ANA at 1:160, but after a year of plaquenil and low dose prednisone, it went negative. I am glad I had a good doctor who felt something was happening because of my symptoms and treated me. Originally, I was diagnosed with seronegative RA and then years later a lip biopsy was positive for Sjogrens. Blood work for SJS was always negative.
Sjogrens and RA,  Morphea (skin scleroderma), Hashimoto's, 
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irish

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Re: On line physician speaker ANA
« Reply #5 on: May 29, 2019, 03:17:37 PM »
Basically it is all a crap shoot with autoimmune. Soo many of us have less than positive results to tests.. As anexammple one of myh docs got a wild idea and told my ENT to do a lip biopsy. He had treated me for 7 years and I had been ill for 39 years when I had the biopsy done. It was positive!!!!!!! My doctors were just sideswiped by this as I had some oral/eye symptoms that were not all that bad (but my teeth were).

The sad thing is that I had spent a a lot of time on the road and a lot of money going to the doctor ands dentist in those 39 years. So, yes, a new more sensitive blood or tissue test is needed. Need I say more. Irish