sjogren's with neuropathy

[concerned16920]

Hi,
I've been back and forth between this forum and the MS forum.  Now that I know a little bit more of what is going on with me I'm wondering if anyone else has similar symptoms.
My SSA test came back 5.5 which points to sjogren's and my dad has sjogren's as well.
I do not have the dry eye or dry mouth but instead I have tingling, burning pain, painful feet, arms, legs etc. from what seems like small fiber neuropathy.  My neurologist has listed several anti-depressant meds that I'm reluctant to take because for now the pain is mild to moderate.  I do feel these symptoms all the time but worse in the afternoons and evenings.  Has anyone ever had these symptoms with sjogren's?  I know it's not very common.  I'm wondering if they will continue to progress.  For me they've gotten worse in the last 7 months.  
All my other tests have been normal, MRI's, bloodwork, and I'm due for a skin biopsy this week.  Otherwise I'm very healthy.
Any thoughts?
Karen

[Lori707]

I have chronic Lymes which did a job on my immune system. I have Hashimoto's, inflammatory arthiritis(probably Lymes arthritis), all sorts of neuropathies, a high RA Factor and thyroid antibodies. My muscles are also doing a job on me. I am currently on anti-fungal meds for Candida. My eyes are dry as well as my mouth.      

My doctors gave me a script to have a lip biopsy for sjorgrens but I can't find anyone that knows how to do it. The doctor said I should do some research. My dermatologist doesn't do it and neither does the oral surgeon.

What kind of doctor do I look for?

[Neecy55]

I was diagnosed with sjogrens syndrome with a simple blood test done by my rheumatologist. Why don't you get your doctor to do that so you don't have to wait for a diagnosis?

[ZeeIn]

Hi all.  I have Sjogrens with severe dry eyes and dry mouth. Peripheral Polyneurapathy that causes sporadic nerve pain all over my body so out of the blue my left art will jerk fro
the pain, my back, my legs? Etc.  No prediction when the shooting pains will occur. I take Neuontin 600 three times daily.  Rheumatoid Arthritis which has impacted nearly every organ and joint in my body with possible RA nodule involvement in my Lungs, Asthma, heart Disease and thyroid involvement.  

[Linekce]

Dear Karen,
I also have what my neurologist believes is small fiber neuropathy. I have a positive ANA but other rheum antibodies are negative (buty rheum only ran them once so far). I have dry eyes, mouth, and skin but not as severe as most Sjogren's patients. I have pretty severe joint pain and fatigue, and these were my presenting symptoms in Aug 2008.  I am 26 years old now. I had a normal EMG/NCV, positive QSART, normal leg skin biopsy but my neurologist said she will repeat the biopsy in a year to check for reduced nerve fibers. My neurologist suspects that I have Sjogren's. My numbness and burning pain began 1 year ago before I saw my rheumatologist or neurologist. It started in my right foot but a few days later I was numb in my left foot. It spread up both my legs up my thighs to my hips. within a few weeks it started in my hands and spread up past my elbows.
I'm not sure if you've experienced muscle twitches, but I get myoclonic jerks I believe they are called, in my calves and thighs when I try to relax. For example, when I'm at a stop light sometimes my thigh muscle will twitch. And when I am at work, sometimes when I am on hold my pinky finger will jump up once. When I am lying in  bed my calf muscles will jerk. I also get muscle cramps almost everyday.
But i feel like the neuropathy is definitely my most  irritating symptom. If I apply any pressure on my limbs, they go numb within a few minutes. So I cannot sleep on my side, I have to sleep flat on my back. I also cannot do much writing or work with my hands or they go numb. If I squat down my legs go numb. Even though I am taking 1600 mg of Neurontin a day (400 mg qid), I still have all these issues. I find that my level of physical activity has a big effect on how much numbness and burning pain I experience. I am taking Plaquenil 200 mg bid to try to slow the immune response, but since I am getting worse I'm not sure if it is working. For the past few months I have been tripping over my feet, and my boss (who is also a neurologist but not mine due to insurance) says this means I am either having motor involvement now or my brain is not aware of the location of my feet. Neither sounds too promising.
Are there any other Sjogren's patients or other automimmune patients with small fiber neuropathy in this forum? I don't have a Sjogren's diagnosis yet but my rheumatologist won't do a lip biopsy or schwimmers test until 1 year from now she said because she doesn't want to do it twice. It's very frustrating not to have a diagnosis but all the neurologists highly suspect Sjogren's.
I look forward to hearing from others with these problems. Take care.

[Dr Vinod]

Peripheral neuropathy - a set of disorders resulting from damage to nerves or to their protective coating - occurs more often in people with Sjogren's syndrome than in the general population. Although the total number of people who suffer from peripheral neuropathy is not known, it is suspected that at least 10-20% of people with Sjogren's syndrome have it.

The peripheral nervous system comprises nerve fibers bundled together to serve as messengers for sensations from the brain and spinal cord to organs, muscles, and skin and back to the brain. The fibers are coated with a protective membrane known as the myelin sheath. Peripheral neuropathy occurs when either the nerve fiber or the myelin sheath is injured and the ability to send messages or impulses is affected. Because there are many types of both nerve fibers and injuries, peripheral neuropathy can be difficult to diagnose. It is not a single disease with a single set of symptoms, but a number of ailments with different symptoms and consequences.