Small Fiber Neuropathy

I have several auto immune including high antibodies for Sjogrens. I was having weakness down my whole right side / dominant side. Kept telling rhuemy to no avail . Biopsy done of upper and lower leg which confirmed small fiber nueropathy. Also confirmed by Johns Hopkins

Was diagnosed with MS about a year ago. Recent biopsies on my right leg show small fiber neuropathy, and other symptoms to include xerostomia and dry eye, my neuro now tells me that I also suffer from Sjogren's. Recently began a 6 mo protocol of MetaNX, a supplement, quite expensive, and is given by prescription only where I live. It is not covered by insurance, but have been able to get it for about $200 for each 90-day supply. We will see if it helps with the neuropathy in arms and legs. MetaNX is for diabetic neuropathy but, supposedly, has helped some with small fiber neuropathy related to Sjogren's. Though some pharmacies claim that something that begins with an F is a generic for it, further research says it isn't. Some who have been using it for sometime found that when they switched to this claimed generic, symptoms worsened immediately (online). Good wishes to you on your journey. Like you, am in my mid 70's, and newly diagnosed with both the MS and Sjogren's. MS fatigue is the pits! Cognative issues when manifesting the pits. Not able to sleep at night, the pits. So much more. But, it is a travesty that they put those of us our age on a shelf, so to speak because it is believed that the more intensive treatments offered to the young may only help 30% of those are age (or so I am told). My fatigue thus far has been managed with twice a day, but is not working as will as it did a a few months ago. But since it is prescribed "off label," my insurance doesn't pay for any of it. LDN seems to the next medication that my neuro may try; it may help with pain and fatigue (will stop the Modafinil). Again considered off label, cost will come out of my pocket; insurace will not cover it. However, both this meds seemingly have helped those with MS, off label or not.

I had leg weakness too. Sjogrens I thought was the easiest. Can come with some interesting symptoms that go far beyond dry eyes/ dry mouth

I just saw a new neurologist that I really liked and was very kind! I was told that he does not see patients for sjogren’s disease or other autoimmune diseases but would see me for neuropathy issues. He believes very strongly that I have Small Fiber Neuropathy. I’m having many tests now. Does anyone else on this sight have this and might want to discuss it?

Was diagnosed with MS about a year ago. Recent biopsies on my right leg show small fiber neuropathy, and other symptoms to include xerostomia and dry eye, my neuro now tells me that I also suffer from Sjogren's. Recently began a 6 mo protocol of MetaNX, a supplement, quite expensive, and is given by prescription only where I live. It is not covered by insurance, but have been able to get it for about $200 for each 90-day supply. We will see if it helps with the neuropathy in arms and legs. MetaNX is for diabetic neuropathy but, supposedly, has helped some with small fiber neuropathy related to Sjogren's. Though some pharmacies claim that something that begins with an F is a generic for it, further research says it isn't. Some who have been using it for sometime found that when they switched to this claimed generic, symptoms worsened immediately (online). Good wishes to you on your journey. Like you, am in my mid 70's, and newly diagnosed with both the MS and Sjogren's. MS fatigue is the pits! Cognative issues when manifesting the pits. Not able to sleep at night, the pits. So much more. But, it is a travesty that they put those of us our age on a shelf, so to speak because it is believed that the more intensive treatments offered to the young may only help 30% of those are age (or so I am told). My fatigue thus far has been managed with twice a day, but is not working as will as it did a a few months ago. But since it is prescribed "off label," my insurance doesn't pay for any of it. LDN seems to the next medication that my neuro may try; it may help with pain and fatigue (will stop the Modafinil). Again considered off label, cost will come out of my pocket; insurace will not cover it. However, both this meds seemingly have helped those with MS, off label or not.

I just saw a new neurologist that I really liked and was very kind! I was told that he does not see patients for sjogren’s disease or other autoimmune diseases but would see me for neuropathy issues. He believes very strongly that I have Small Fiber Neuropathy. I’m having many tests now. Does anyone else on this sight have this and might want to discuss it?

I can reccommend LDN for at least pain, if not for your entire immune system. I have been on it since 2019, had to go off of it 3 times and each time the all over pain came back in about a month. Stopped within 2 days when I went back on it. Have multiple autoimmune conditions myself.

I think you have misunderstood me. I want to reverse the neuropathy pain. I have completely changed my diet and my weight is perfect and my A1C is low 6's. Controlling type 2 diabetes does not control the pain from neuropathy. Not controlling type 2 diabetes can result in very bad things. I am controlled, yet still suffering from the PAIN.

I have had pre-diabetes for years and now have severe fiber neuropathy. Dr. Eve Feldman (diabetic autonomic specialist) at U of Michigan says that type 2 diabetes results in neuropathy even with good insulin control. How many neurologists and endocrinologists are aware of her papers?

I agree with your statement: "that type 2 diabetes results in neuropathy even with good insulin control" I want reversal or treatment of the pain. How do we heal peripheral nerves?