Hi everyone,
Im new here and I am still in the process of getting an "official" diagnosis. I have preliminary bloodwork of postive ANA and SS-SA but moved to a different state and i am starting the process over. My PCP in AZ believed It is what was going on but the rhuem I saw looked at me from across the room and said NOPE so im confused. I looked it all up and unfortunatly every piece of my puzzle does fit with this wonderful thing. I get by on motrin, eye drops, nose spray, chapstick, avoiding certain foods and endless searching for answers. I was diagnosed with Hashimotos thyroiditis which is also just so fun to manage. Im so tired of fighting and trying to get answers. I am sick of being told its in my head and I need a psychiatrist. Im sick of all the tests and doctors. I dont understand why its so wrong to just want to know so I could possibly have at least an angle to persue for some form of treatment or management of symptoms. Can anyone help me? Give me tips on who i should see first and what i need to ask to be done? I gave up on docs a year ago but things are just getting worse and worse and I need to find out. My kids need there mommy back. :) I feel alone and crazy. Thanks for listening.
Hi and don't beat yourself up or let the doctors either. Having been on this forum only a short time, I already have come to the conclusion that the answer lies in doing my own research, keeping a good log of my symptoms and then telling the docs what I want them to do, instead of them telling me they just don't know. I'm going to be having a lip biopsy and a Schirmer test for dry eyes to attempt to get a diagnosis. However, my rheumy didn't order it on her own. I told her I wanted every test to see if I can get a diagnosis. If, after that, I still don't know for sure, I'll keep taking the meds and hope that at some point I will have "the" answer. Right now she knows it's an autoimmune issue and believes I have RA, but some strange version of it. She explained that 2/3 of her patients never meet all of the diagnosis criteria for any one of the diseases, but have overlapping symptoms of several at once, so very difficult to diagnose. Hope you find your answers and/or peace about not finding them.
Welcome to the forum Given Grace. Some Rheumy's ill Dx by symptoms alone. Others do not believe that there can be AI diseases. Some just do not want to make a commitment. I have had one of the first, one of the second and four of the last. When I had dry eyes, nose, mouth, skin and lower regions I bluntly asked what the Dr thought I had. Sjogrens came up. That is what I thought I had. One of the ones that did not want to commit told a neuro that told me.
Some of us have posted what we take in our signatures. If you are looking to manage your situation, do your research from our signatures. There is no cure for any AI disease that I know of. There are medications and supplements that can be taken to help you manage your symptoms. Research them your self then ask your Dr. if they will harm you.
Omega-3+, D3, Lipoic Acid, Carnitine, and inositol seem to be common to support your body. Add B12 for nerves. MTX and Plaq will suppress your immune system if you can take them. Others may or may not be useful in your situation.
I finally got diagnosed at a teaching/research hospital here in Iowa after doing the "specialist run-around" for 6 years.
I really recommend one if you have one in your area. I get the main dr and 1 or two other "learners'. They ask each other questions and discuss things and I feel actually work at trying to diagnose or resolve something. I've never felt they gave up on me or think my first stop should have the the psychologist. ;)
I was diagnosed by an immunologist. My ANA, SS-A and SS-B were soooooo high there was no doubt it was Sjogrens. I really makes me wonder about the other "specialists" I saw.
You are not joined at the hip to a doctor. If he/she isn't helping, doesn't listen, doesn't like or answer questions or you feel you are not getting and help, SWITCH.
I have underactive thyroid too. But when 1st diagnosed, that got under control in 6 months. I get a TSH blood test every year for it to check. If your levels are not right, the dr should be working with you - trying different dosages and doing blood tests to get it level. You should not have to suffer the ups and downs of that too.
thanks everyone. I am being very stubborn with the docs and right now its a matter of what my insurance will allow. I for now take mostly just supplements I get from a naturopath doc i had back in AZ I take a multi vit, D3, B12, magnesium/taurine mix, flexeril, levothyroxine and a natural thyrosine complex (my thyroid gets crazy my body reacts when its still in the docs "norm") I feel good knowing that i am already doing some of the right things to manage my symptoms. I was on so many different meds and got off of all of them when docs said they were the cause. I did everything they said i needed to and only 1 doc did things to help. I seriously thought i was crazy until I started reading all the stuff here and realized I am NOT alone. I felt a peace today that I havent had since i started my fight. I am scared to death that its going to take me getting REALLY bad before i can get help with this. I live in KY and we have UK about 45 min away which is a GREAT teaching hospital plus i found a place a couple hours away that specializes with Sjogren's I am definatly on top in the research and I will take the advice here and keep going on head strong and make them work for me. I am so tired of feeling like crap all the time.
Thanks again everyone.
I got one other question for everyone. Every smyptom fits with this except my heart. I get weird heart beats or pounding and I have been tested and I have what they say is a begnin arythmia. Does anyone else have heart issues related to SJS? I know it can be from the thyroid but i was just curious.
A number of people have heart related problems on the forum. Maybe cremer(?) or JcBritguy(?) will talk about their issues.