Hello! I have had a long and complicated medical history and I am looking for answers. I have stage IV endometriosis, suspected adenomyosis, renal tubular acidosis, retro peritoneal fibrosis, migraines, asthma, and have had three surgeries this year, one to remove a kidney stone from a blocked ureter, one for endometriosis in which I had a bowel resection, and an emergency cholecystectomy. I have a history of severe adhesions in my pelvis and abdomin, despite efforts to reduce inflammation and suppress the immune system. I have a lot of allergies, most of which are classified as autoimmune by my allergist. IN the past few years, since I took Lupron for Endo, I've had confusion, loss of concentration, trouble with working memory and recall, difficulty finding words or tripping on words. Recently, I've begun having severe migraines with aura, and severe pain and tingling in my hands, feet, and legs. I went to neurologist about the headaches and tingling, and had bloodwork done. Everything came back negative. However, ssa and SSB were 9.7 and 4.55 units, respectively, units were described as OD units, with 0-19.99 considered "normal." Everything I've read online about ssa and SSB says anything over 1 is considered positive. I asked my doctor and she it was normal. I've had a lot of experiences where doctors have assured me everything was normal, only for me to end up having surgery and have a shoot show inside of me! I'm going for an MRI and to an orthopedist today, and I think I'm going to get a second opinion with a rheumatologist. Just looking for advice on what to think. Thank you!
Sorry to hear this.
Has your doctor been to finally diagnose your medical condition?
Hello so very sorry to hear about the health issues you have had...when you say your dr, do you mean a rheumatologist or a primary care/internal medicine dr?
My experience, and this is just my personal experience, it took me firing two primary care/internal medicine drs and finding a third who was willing to look more deeply into my symptoms and what was going on and then he referred me to a rheumatologist who finally diagnosed me. I do not think, and again only my opinion, that most internal medicine drs do not have the knowledge and expertise to diagnose and treat sjogrens. More rheumatologists are willing treat sjogrens with certain symptoms even if sero negative...where mds will not.'
Have you been tested for deficiencies at all? Vitamins, lyme disease, etc.?
All just thoughts.
I do know how very frustrating it is to feel so sick and overwhelmed and have no clear answers as to what is wrong. I hope you are able to find either another PCP or a rheumatologist who will take you seriously and try to get to the bottom of this.
For me, my symptoms were years of sinus infections, ear issues, dry mouth, cavities, weight loss, heart palpitations, pins and needles sensation, dizziness, dry eyes and mouth...to mention a few. I too have asthma as well though.
Please let us know how you are doing and if you are making any progress. Sending positive thoughts your way.
I know nothing about all your issues but the one thing that I noticed is that you seem to have a sort of overgrowth of tissues in different ways. The fibrosis is a thickening (sort of ) of tissues. I am wondering if you should be seeing an immunologist.
It is entirely possible that this is autoimmune but may not be a "normal" case of Sjogrens. The connective tissues can be affected in many ways and there may be specialist out there who treats weird conditions and sometimes the only way to find these docs is by referral The immunologists treat a lot of really weird stuff and may just know where to send you. It sounds like you body is sending out smoke signals and needs someone to put out the fire. Get some other opinions cause that is the way to forge ahead. Good luck. Irisih
I just want to send you good vibes and words of hope. Don't give up on finding out what is going on. We are in a different class of medical conditions and it seems as though it takes us longer to connect the dots. Stay positive as much as possible and don't give up getting answers. If one rheumatologist can't help go into another one's door. We are unique but we can survive this. One day at a time. There are some meditations that can help us relax and get our positive hormones working for us. My memory fades me but someone on here has tones for different things.
Hi Kelsrose, I'm sorry you have so much going on! You were asking specifically about the ss-a and ss-b value!
It depends on what range your labs use. I just looked at mine. For instance:
Baylors range is <100 U/mL negative, > 100 equivocal, >120 positive
My ss-a was 3 and ss-b 25. So both negative at Baylor
Kelsey-Seybolds range is <0.0-0.9 negative, >0.9 positive.
My ss-a was less than 0.2 for ss-a so negative, but 1.2 on ss-b so that's positive.
You can't just go by what a research paper says. It all depends what the range at your lab is. That is why your doctor said your numbers where normal. Remember your numbers were well below the 19.99.
Having said that, if you have strong symptoms suggesting sjogren's, or any autoimmune, the doctor should at least treat the symptoms and retest you. Did the doctor run the ANA? How about RNP?
I'm not sure how this old post resurfaced, since the original poster withdrew their membership and cancelled the thread shortly after it was first posted.
It's so nice to see everyone offering help, support and advice, that I'm leaving the post here, for the value of the replies, you never know when someone in similar circumstances will see these things.
Oh for the love of pieter! I usually check on the date! Old posts like that really need to be locked somehow!