Sjogren's Syndrome?

@synthiame The mycophenolate was prescribed to suppress the immune system, which is attacking and destroying the insulation (myelin sheath) around the autonomic and peripheral nerves. The hope is that it will slow the destructive process. It may, but not necessarily, have the added benefit of allowing some recovery. In my case the primary symptoms were numbness, tingling, hyper sensitivity, and shooting (electric-shock-like) pains in the feet and toes, as well as orthostatic hypotension (drop in blood pressure when standing). I've been on the mycophenolate for about 18 months. The shooting pain is noticeably less frequent, sensitivity to touch is a little less, and other symptoms of peripheral neuropathy are about the same. I'll be tested again at Mayo in June and find out if the orthostatic hypotension has changed.

It’s my understanding that a positive SSA is kind of a slam dunk for Sjogren’s diagnosis. SSB by itself is not as specific for Sjogren’s and can also appear with other AI conditions like lupus. While SSA and SSB often appear together, a solo SSA weighs in heavily towards the Sjogren’s diagnosis-especially at such an elevation.

@jrkittel I had neuropathy in my feet (I am a Sjogrens Syndrome patient), then it started to occur in both legs. I feel numbness in both legs from the knees down. Neurologist believes it is due to Sjogrens. He plans an EMG on my legs to find out if it is small nerve or large nerve and this will more clearly define the cause. After that, he plans a biopsy to further explore nerve damage.

No you don’t need both my ssa was high my lab results said positive for Sjogrens just an fyi lupus along with rheumatoid arthritis is the sister disease. Normally if you test positive for Sjogrens you will test positive for one of the other ones.

@artemis1886 Just to clarify: Many have what is called primary Sjogrens which means you only have that one disease. Only secondary sjogrens can be accompanied by and the result of lupus or RA.

I have systemic sclerosis (scleroderma) as my primary disease - 4 years into diagnosis. Originally, I tested negative for Sjogrens, Lupus, and RA. However, now 14 months post stem cell transplant for scleroderma administered with high dose chemo, radiation, and steroids (at Duke) I have developed peripheral neuropathy, dizziness, off-balance, muscle weakness, and brain fog. Looks like newly acquired multiple neuropathies associated with Sjogrens.

May need to re-test for those conditions that cause neuropathy.
Anyone with scleroderma and Sjogrens, Lupus, or RA?

@altabiznet peripheral neuropathy occurs in about 15-20% of those who have Sjogrens. Also have you research dysautonomia? (I'm sure I am spelling it wrong).

Post autologous Stem Cell Transplant for scleroderma, I have Dysautonomia. Symptoms vary depending on the type of dysautonomia and which body systems are affected, but common manifestations include: https://www.bing.com/search

-Cardiovascular Symptoms: Fast or slow heart rate (tachycardia or bradycardia), irregular heart rhythms (arrhythmias), low or high blood pressure, chest pain, palpitations, and exercise intolerance.
-Neurological Symptoms: Dizziness, lightheadedness, fainting (especially when standing), balance problems, brain fog, forgetfulness, migraines, mood swings, anxiety, and sleep disturbances.
-Gastrointestinal Symptoms: Nausea, vomiting, trouble swallowing (dysphagia), constipation, diarrhea, and abdominal discomfort.
-Urinary and Sexual Symptoms: Frequent urination, urinary incontinence, sexual dysfunction, and poor bladder control.
-Sensory and Autonomic Symptoms: Sweating abnormalities (too much or too little), temperature swings, clammy or pale skin, unusually dry or watery eyes, light or sound sensitivity, and vision issues such as blurred vision or difficulty adjusting to light.
-Other Symptoms: Fatigue, shortness of breath, excessive drooling, and low blood sugar (hypoglycemia) can also occur.
-Symptoms may be acute and reversible or chronic and progressive, and they often overlap across multiple organ systems, making dysautonomia a complex and sometimes “invisible” condition. Some individuals may experience orthostatic intolerance, where standing causes dizziness, fainting, or neck and shoulder pain (the “coat hanger sign”) due to reduced blood flow.
The Dysautonomia Project
Because dysautonomia encompasses many subtypes, including postural orthostatic tachycardia syndrome (POTS), vasovagal syncope, and familial dysautonomia, the exact symptom profile can differ widely between patients.

@danarosef

Looks like a have dysautonomia, more likely due to Stem Cell Transplant with chemo/radiation. Prior to the transplant, and in the "natural" course of my scleroderma, I did not have any arrhythmias, or light sensitivity, blurry vision, high blood pressure, dizziness, off-balance, or any other neuropathy. Another possibility, that I have developed Sjogren's, also post-transplant, as I tested negative prior to the procedure. Thank you for sharing.

It is such a journey to get to the bottom of these things! Hang in there.