Has anybody on this site had the lip biopsy? What other tests can be done other than blood tests to get a diagnosis. I am already stressed enough without worrying about this. How bad is it?
Not everyone will have blood work that shows anything. I'm seronegative for Sjogren's and psoriatic arthritis. Not even my sed rate goes up substantially. But I am being treated for both conditions. Thankfully I found a doctor who understands that there are people who are seronegative and is comfortable making a diagnosis based on clinical symptoms.
Why does your doctor want to do the lip biopsy? It doesn't always show anything.
Yeah, I read online that sometimes they are inconclusive. The oral surgeon that I saw mentioned it because I told her the other doctors I had been to were dismissing my concerns. She also mentioned the schermer test that the opthalmologist does. It just seems to be a lot to go through for a diagnosis. I know what I have, I have all the symptoms. My rheumy keeps bringing up fibromyalgia. My esr and Ana along with SSA and SSB were all negative. I don’t want to have SS and I almost feel like l have to rule it out for my own piece of mind! I have just been to so many doctors and spent so much money and now I’m having all this anxiety as a result, maybe I’m just better off giving up! I am tired of doctors looking at me like I’m crazy.
The Schirmer test is not invasive ,so it’s reasonable to start with this.
In terms of fibromyalgia, it’s a diagnosis of exclusion,meaning that other conditions should be ruled out definitively before receiving a diagnosis of fm. Fibromyalgia can occur in conjunction with autoimmune diseases. When a person is being properly treated for all diseases or conditions, they should see improvement. If it is fibromyalgia, it is not in your head, and it is manageable.
My blood work showed that I'm seronegative, but I had the lip biopsy done (my rheumy and I were both convinced I had SS) and it turned out positive.
The procedure itself isn't really painful as they numb you up for it. It's two small incisions and the removal of an itty bitty section, you'll get a few little stitches usually the type that dissolve on their own. Think- papercut.
There are some risks with it but they are minor. I'm one of the ones that ended up with a slight continued numbness on the inner part of my lip. I don't even notice it unless I press my nail against it, then I notice that it feels just a little bit different on that spot. Every now and then I notice a larger area is numb, but it's like a flare--- just fine, just fine, just fine, why's my lip a little numb, just fine, just fine... It does not interfere with my day to day life.
I was lucky enough that at the time my insurance covered the procedure almost completely, just had a small co-pay... not sure what it would cost me nowadays though. Your doctor can diagnose based on symptoms, family history of it and so forth... but it is prefered by most doctors to have at least one test that is positive.
Don't be stressed about it. If it's in your price range just go ahead and get it done. Peace of mind.
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Thanks, o.k. maybe I should start with the scheremer test after all dry eyes was my first symptom. I have been dealing with that for 5 or 6 yrs. maybe longer. It got pretty chronic for a while. I still don’t know about the lip biopsy. Rae it sounds like the numbness really does bother you. And it sounds like a little bit of nerve damage from the procedure. I already have enough going on in there with all the dryness and burning! I didn’t realize so many people were seronegative! Maybe I’m not crazy after all!
Rae, how long has it been since you had the lip biopsy done? Maybe the nerves will heal. It just may take some time.
Karen,
Thanks for the concern, in the grand scheme of things the little bit of numbness on that one spot is minor. I haven't noticed it all day today, but just now I ran my tongue across my lip reading this and noticed that in that one spot it feels different. I had the lip biopsy more than 5 years ago... you are correct- there is nerve damage and this is one of the possible complications, but it is rare- usually a person will not notice anything after they have healed. It may indeed get to the point in time that I will no longer be consciously aware, my body heals very slowly and scars very easily- I knew this about me before having the biopsy done and I'm happy that I had it done. As for the numbness bothering me- nope- I was simply trying to be very honest with you and not sugar coat it.
Definitely choose your own path. The Schirmer test is a good one, but please understand it is not always conclusive. Personally I had the test done two different times, the first time- normal, a different doctor performed the test and said- eyes are very dry (rating of 3 if I remember correctly). Yes, the test can be used in diagnosing, but it really does come down to your doctor saying - yep, this is what you've got.
Long reply in short- take your time, deal with what you can when you can, educate yourself and advocate for yourself. Some tests will go well, some won't, some will tell you things you aren't ready to hear.
Sjogren's according to definition is not life threatening, so... whether you are positively diagnosed or not you can still do things to alleviate your symptoms: 1 ) stay hydrated. 2) get plenty of rest. 3) eat healthy (I mess this one up all the time). 4) moisturize. 5) eye drops and warm damp washcloths applied to eyes at least twice a day. 6) sugar free candy/ gum and try products like Biotene Oral Gel/ Mouthwash/ Toothpaste. 7) Saline nasal spray. 8) Sunblock and avoid sunburns. 9) Hydrate (repeated on purpose).
Nope, not crazy, just seronegative.
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Thanks Rae, that sounds like some very good advice. A lot of those things I am already doing and some I didn’t even think about like the sun block and I’m not so good at the healthy eating either but I’m working on it. Since I lost 25 lbs. from not having an appetite I’m gonna try to keep it off! I’m sure that will help with the joint pain as well. I am eating now since the Lexapro is working. I am hoping that getting the anxiety out of my life will help me start feeling better. I just have to remember to stay calm and take it one day at a time. I know now that stressing about it isn’t going to change anything! Again, thanks so much for all the suggestions. This site has a really great group of people to talk to. It has helped me a lot!
I had the lip biopsy done a few weeks ago. It's very minor procedure. It confirmed my diagnosis which has helped. I've been really stressed out as well trying to deal with the symptoms and all the doctor and dentist visits. Just knowing I had the disease has relieved some of my stress.
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Thanks Cags, I want to have the procedure done but I’m worried about inconclusive results. After all everything else has came back negative. I had hoped after going on the Lexapro that some of the moisture would return because I had read that stress and anxiety can make your mouth dry. Even though that don’t explain all the other symptoms, all my co-workers and family are convinced it’s all from stress. Strange thing is, I wasn’t stressed out until my mouth went dry. I had already been dealing with dry eyes and joint pain for years. The really bad fatigue came along around the last of 2015. But when my mouth went dry in Jan. it all just came together. I know what I have and I can relate to everybody’s stories on this site. I just need a diagnosis so I can get treatment and get on with my life! I need my family and friends to know it’s not all in my head!!!