I'm a 45 year old male who up until 5-6 years ago was healthy as an Ox. I never went to the doctor unless I broke a bone which I did several times playing sports. It all started on day as an itch on my left foot. This itch progressed into tingling in both feet and numbness in feet and legs. Then the pain started. I have terrible pain in both legs (mostly below the knee) but my feet are the worst. Even the bones in my toes kill me. I went to my primary who referred me to a neurologist. After may tests and blood work. The doctors could not diagnose me. I finally made a decision to go to the Mayo Clinic or Johns Hopkins in Baltimore. After 2 visits and many more tests I was diagnosed with Sjogrens Syndrome with chronic neuropathy. My life has totally changed. I'm in pain everyday and I have had to go on disability which just is against all that I believe. I had a question that I can't seem to get the right answer. One of the big (out of wack markers) that the doctors are seeing is the protein levels in my spinal fluid are sky high. I can't remember the exact number somewhere in the 600's when the normal should be around 45. I have just went through Cytoxan and Rituxan (sorry for my spelling) chemotherapy to kill the B cells that are causing the inflammation (proteins) in my spinal fluid. I'm due to take another round of Rituxan this month but I have to get another spinal tap (#5) to see in the proteins in the spinal fluid have gone down. HAS ANYONE BEEN THROUGH THIS BEFORE AND ARE THERE ANY ALTERNATIVES IF THIS CHEMOTHERAPY DOES NOT WORK FOR ME? JUST TO NOTE I HAVE TAKEN IVIG AND STEROIDS WITHOUT SUCCESS. ANY SUGGESTIONS WOULD BE APPRECIATED. IF ANYONE NEEDS ADDITIONAL INFORMATION I CAN PROVIDE THAT. I APPRECIATE YOUR TIME AND POTENTIAL COMMENTS.
If you are being given chemotherapy to reduce the proteins, then either there were malignant or cancer cells found in the spinal tap or an auto-immune disease is suspected. If latter is the case then your ANA must be high and this would need to be further investigated. Maybe you have other autoimmune diseases along with Sjogrens Syndrome with chronic neuropathy. The proteins will come down once the inflammation subsides. You may need a change of drugs for this. If former is the case then the proteins will settle down once the tumor subsides.
Also, whether you have Sjogren’s syndrome (SS) or not needs to be confirmed. To confirm, you need to undergo two main tests: anti-nuclear antibody (ANA) and rheumatoid factor, the latter because it is possible to get SS secondary to rheumatoid arthritis. Typical ANA patterns in SS are positive SSA/Ro and SSB/La. SSB/La is more specific for SS while SSA/Ro can be present in numerous other autoimmune conditions. Apart from these tests, Schirmer's test to measure the production of tears, and a slit-lamp examination to look for eye dryness should be done by an eye specialist.
Do discuss this with your doctor. Take care!
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