Hi, I usually post on the back and spinal boards as I suffer from many back problems, but I also have auto-immune disorders, Sjogrens being one of them, I suffered for years many years before being diagnosed three years ago for the disorder, I'm currently on Evoxac three times a day, I drink plenty of water , chew lots of sugarless gum, do the eye drops, etc..... I'm also on plaquenil for lupus, I also have raynauds.
My question is I've been getting partial head and facial numbness that my neurologist was testing me for strokes, clotting disorders all of which thank god were normal, my neurologist and pain doc. both said that my head numbness is coming from my neck but that my facial numbness could be coming from my sjogrens disease.
I've read a book about sjogrens and for the life of me I don't remember anything being mentioned about neuralgias, and unfortunately I cannot find the book, do any of you know if sjogrens causes neuralgias?
I'm also to get a hearing test as I've noticed that I have a decrease in hearing in my right ear and it at times feels full but I have no fluid in my ear, I also have decreased sensations on the right side of my face.
I'm sure as all of you know this disease is a bugger,,,I have days where my evoxac helps and other days where it doesn't.
It took three years for my blood work to show sjogrens, my anti-SSA last round just came back very high positive, I suffered for years with chronic dry eyes, very bad dry skin, constant thirst no saliva in my mouth docs kept testing me for diabetes always came back fine and then they would let me go, it was a long struggle to finally get to where I'm at now.
I'm sure I'll be visiting here also, I didn't realize that there was a sjogrens area here, now I'm glad I found you all.
Hello Tulip! Neuralgia and Sjogrens'. I can attest to it. At times my face is SO sore that I cry. Your story sounds similar to my nightmare. I've also had Sjogren's for years but just now have finally been diagnosed. I am taking the anti-malaria drug also as it works as a general anti-inflamatory. For 17 years I have asked Doc. 'why is my voice so hoarse and my throat so sore?" They'd look down my throat and say, "it isn't red" and that was that. Didn't matter how much I told them it was swollen and hurting. Finally I had a bout of Angio-Edema and looked like a lip collagen implant from hell. They started to understand! Duh! LOL!!! I took photos and that was the best thing I've ever done. I have worn a retainer over my teeth for 25 years and that helps with the entire facial thing. I am always stretching my cheeks and massaging them and this too helps. But there are days when I do cry from the pain.
My hearing is 'off' and my whole head is off some days as well. If my head if having an off day I don't even consider getting behind the wheel of a car because all of my reflexes are too slow. It seems to be in almost all my body systems now. I am SO glad to have stumbled upon this web page. I hope to find a few friend for support
I just saw this post as I was looking for Sjogrens symptons. Someone that had the same things that I do, but the doctors think I'm nuts. I just am getting over a bad flare, swollen glands, sore throat, hands hurt so bad I couldn't use them. Had IV therapy for three days, fluids and antibiotics, also a steroid shot. Feeling better, but all my teeth hurt, feel like they are on edge!! Also with this darn Sjogrens and Lupus I have terrible ringing in my ears. It feels good to find people that know your not crazy. Been diagnosed about 2 1/2 yrs ago.
I'm interested in the response you will get from others. I've suffered from Bell's Palsy back in 1988 on the right side of my face. It cleared up but interestingly enuf it is the right side of my mouth that suffers the most from Burning Mouth Syndrome, which is attributed to nerve damage.
[I have loss of hearing in my left ear and they discovered a small aneurysm so wondered if there had been a small bleed.
Yup, your are right in saying this disease is a bugger. Yup, meds help and there are good days and not so good. I rest on the 'not so good' and live a quite disciplined life in order to do the maximum I truly want to do.
Just took part in the VERY first Sjogren's Walk in Canada on Sunday. We walked 1.4 kilometers and were all glad when it was over [except those w/out Sjogrens's were suprised it was so short.......it was a good lesson for them to realize that was about the extent most of us could go for! LOL!
Tulip, Ive had sjogrens since I was 15, now 43..have lupus and raynauds. Right now Im having horrible neuropathy like you, the numbess and pain (nerve) all over. It was 99% better when I had my rituxan infusion last year, but now its worn off and im going crazy..very dizzy also. Sjogrens can be very severe just like lupus as your prob aware.
There are several articles about Sjogrens and Neuro issues on the internet...they say it can act just like MS? You might need to find another treatment like Imuran or Methotrexate since it sounds like your Sjogrens is out of control like mine. good luck
Read your post and was amazed. I was just diagnosed with sjogrens yesterday should have know, I was in denial. I have most of the symptoms and also other autoimmune diseases as well, thyroid (Hashimoto's) autoimmune hepatitis with cirrhosis and also kidney problems, with anemia's and all the things you mentioned. Yes myalgia, (muscle pain) and bone pain are associated with any autoimmune disease. I have suffered for 3 years went to a new Doctor and she filled in the blanks now what she will do is another story. I am currently on Imuran for the liver that is stable so far now for the rest who know. Heat helps I do a heating pad and of course massage when ever it is possible it does help.