Hi, I am so glad to have found this forum. I am 39 years old and have extreme fatigue, joint pain, and numbness in my arms that is worse at night that makes it very difficult to sleep. I went to a family doctor who ordered labs. I have low Vit D (19) and my SS-B antibody was positive at 4.2 and RA was negative. Doctor did not order an ANA. I don't know if I have Sjogren?s or not. He was more concerned about getting to his next patient than to talk to me. I have made an appointment to see another doctor to see what he says and will see him next Wednesday. Can the SS-B antibody be positive without having Sjogrens? I do not have dry mouth or eyes, but some days the fatigue is so bad that I can hardly put one foot in front of the other and my joint pain keeps getting worse as time goes on. Any insight you can give me is appreciated. Also, can someone recommend a good Rheumatologist in the Knoxville, TN area? Thanks
Yes, you can have sjogrens---in fact a person can have sjogrens without any positive blood work at all. This is called being "seronegative" and man of us on this site have been or are seronegative. I was for probably 35 years before I converted to positive blood work.
Also, my eyes were the very last thing to bother me. I had some drynes of my mouth but not enough for anyone to notice I guess. I was at the dentist a lot and he never mentioned it.
I would address the arm pain with the doc. It is very possible that you are having some carpal tunnel that gets really bad at night. I didn't have a clue that the excruciating pain I was having was from carpal tunnel until I saw a doctor. I ended up having one surgery and that carpal tunnel went away---I was astounded. Sjogrens also has the habit of causing inflammation in the tendons in the body. The carpal tunnel, elbows and achilles tendons can be inflammed quite often as well as any other tendon in the body.
Please feel free to read all you can on this site. Lots of information and many peoples experiences from which to glean information. Good luck at the new doctor. Don't let him talk you out of an autoimmune diagnosis. If they don't prove with blood work,etc the least they can do is to treat the symptoms. Irish ;D
Hi Autumnrain,
Let me also welcome you to the SJS World and family! Please do look around as there are tons of topics that you just might find interesting by using the search engine located in the upper right hand side of this page. If you can't find what you're looking for, don't be shy and ask away as there might be someone about that can help you.
Like Irish mentioned, you can have SJS with or without positive markers. I am also sero negative since this mess began and its been miserable trying to convince some doctors that I actually have something going on in my body. Now there are some members that have all positive blood work and no symptoms whatsoever, while other are totally sero negative and have tons of them...there is no rhyme nor reason to SJS.
I understand the pain, oh my, I sure do; also have fibro so that ramps it up a lot. What did your doctor say about the pain? Did he prescribe anything for it?
I'm glad that your eyes or mouth aren't dry, whew, that is half the battle with this disease!
I'll keep my fingers crossed that the new doctor can figure out what is actually going on. I'm glad that you have at least one marker so that the next doctor will know something is amiss.
Again, welcome!
Take care of yourself now -
Patze
Hi Autumnrain and welcome to Sjogrens World!
I also want to wish you good luck with your new doctor appt next week. I would also bring along a copy of the lab results form your first doctor so he/she has something to work from as well as a list of your symptoms.
I always thought that the ANA was ordered first as a general test for autoimmune issues and when/if that was positive they went on to order the SSA and SSB tests to get more specific information but I could be wrong.
The best thing to do is to talk to your doc....good luck and keep us posted!
Hi autumnrain,
I'll also welcome you to Sjogren's World! ;)
I know the testing process can be confusing, and when a doc won't talk to you and explain it makes it worse. Hopefully, you can get more answers with your appointment on Wed.
Please let the doctor know every symptom you're having, even small things you may not think could be connected. I'm sorry you're having such joint pain; I can really relate.
Feel free to ask anything here at all; we'll do our best to answer and help. You've come to the right place for kindness, consideration, encouragement and information.
Take care and please keep us posted. :)
Melinda
Welcome autumnrain, I am from East Tn. I use to go to a rhuemy close to ParkWest. He diagnosed me with a mildly positive ana, and a sed rate that was always high (for at least 10 years), and he also missed it 10 years earlier when I had seen him once, but sjogren's probably wasn't even talked about at all then.
I now go to one at Crossville, Tn. that I really like. On first visit he did more extensive blood work that also showed I have lupus. I have fibromyalgia too, diagnosed by the first one.
I hope you get more answers from your next doctor. I had to get a regular gp to refer me to the rhuematologists.
I am glad you found us here, but sorry that you need to.
Prayers for you.
susanep :)
Thanks for the warm welcome. I have been looking around a lot and learning sooo much! I will update after my appointment Wednesday.
Glad you've been able to look around the boards.
We'll be looking for your update after the appt.
Take care of yourself. :)
Melinda
Hi, Autumnrain. I'm VERY FRUSTRATED in Knoxville, as well. It is a true healthcare wasteland here. So many MDs, so little expertise and creativity. I'm getting a huge runaround just trying to get a diagnosis. My eyes are so horribly dry, I'm going to have to look into disability. Vanderbilt Eye Institute has been a huge fail, and they were my last hope for even a partial solution. My rheumatologist does not like to work with people with dry eye. An MD friend from NJ told me that rheumatologists are becoming a rarity, so it's hard to find alternatives in Knoxville.
Please look me up on Facebook, message me for my name. I hope you have found some relief/help by now.
Hi and welcome Autumn,
There are a host of conditions that can afflict us. Most are not well understood by the science/research community, tho' they are working hard on figuring things out.
Even when figured out, the treatments for many are light years away.
And many,many doctors simply do NOT understand the basics of most auto immune/immune deficiency conditions, Autumn.
Learn to care for yourself, to describe your symptoms objectively and quantify them (degree of pain, frequency, activities disrupted, etc).
Do not expect miracles. They happen in movies and on TV.
Do expect to be treated with respect and care.
This forum is the best place to bring your questions, concerns, pain, and seek relief.
Many very very wise, experienced, well educated, compassionate people are at your fingertips here.
Take what you need, and leave the rest.
Keep us posted.
Hugs
Elaine
It is NOT all in your mind! (my greatest fear is hearing those words: It's in your mind).
Seems odd to me that the ANA test wasn't done first. That tells the dr if your body is fighting something. Then if that was high, other tests would be run.
When I finally got diagnosed, my ANA# was off the charts and my SS-A and SS-B were very high so there was no doubt of Sjogrens BUT it took so long to get that diagnosis.
Good Luck!
autumrain it may help you to know that SjS and other AIs can take years to develop. My SSA was the first thing that was high, ANA, SSB, etc were fine. After time those readings were off a well. I was diagnoses based on the high SSA and symptoms.
FYI if someone suggests a lip biopsy get some insight and info first. Just my story, I went to Hopkins for a second opinion after my diagnosis. Unlike most folks my lip biopsy was very painful and was negative so they said no Sjs, but maybe it was developing, or maybe I had MS or some other connective tissue disease. They did diagnose me with Raynauds.
I came back, went to the rheumy who originally diagnoses me (after having tons of blood work done by a hematologist and learning that I also have autoimmune anemia). She put me on plaquenil and it is helping a great deal as has lots of self help from diet changes, to stress reduction, and more.
You can get through this. Reading books such as A Body Out of Balance and others about autoimmune disease can be very helpful. Good luck.