Hi Elaine,

I understand exactly how you feel wanting to know where this is heading. As echoed by the other replies, they just don't know enough about this sort of thing. I dont quite understand why. I cant believe this is a condition that just magically started affecting people over the last 10 years. So many people must have suffered even worse than we do before the advent of skin biopsies. I was fobbed off terribly until I pursued the biopsy.

I saw a neurologist again this week, I asked him how many people he sees like me with full body SFN in all limbs and in the face, teeth even. He shook his head and said he doesnt come across many people like this. Argh. That's a great relief for everyone else in the general population but it just adds to the isolation doesn't it.

I have to be grateful for small mercies and just say at least I wasn't really young , like a child or 18 when this started. I am 36 so feel highly short changed as Im not old either but it could have been earlier. My main fear is staying physically and more importantly emotionally above water for long enough to raise my small son to adulthood.

Oh, Dearest Joanna,

To be grateful that you were 'already 36!' That is heartbreaking to me.

Do you have any relief from one of the medications (or a combination) such as gabapentin, lyrica, etc?

I certainly hope so. The SFN, especially in my finger tips, was so horrible, like a torture, really. Stabbing needles into the ends of my fingers.

I still have a vestige of the SFN in my face, lips and tongue. But at 3600 mg of gabapentin, I'm not looking to increase my dosage.

Here are my thoughts on the CAUSE of my neuropathy and other problems:

My Duke Immunologist and my research Immunologist husband speculate that Cytokines probably play the key role in the destruction of my moisture producing glands (Sjogren’s) the lining of my bladder (Interstitial Cystitis) the damage to my lungs (Small Airway Obstruction) the profound damage to the nerves in my legs and feet (Peripheral Neuropathy), the damage to the surface nerves in my arms, hands, fingers, face lips and tongue (Small Fiber Neuropathy) the damage to my bowel and bladder (autonomic neuropathy), and my moderate deafness (Meniere’s)…and probably my anemia and my bizarre copper deficiency.

INFLAMMATION is the result of the action of our Immune System, whether defending us from infection, or mistakenly attacking our own organs/systems.

Inflammation damages our bodies even when caused by the defense of our Immune System against infective agents.

Inflammation also causes: PAIN, PROFOUND FATIGUE, and DEPRESSION.

I know this well right now as my Immune System is waging warfare and I am experiencing all of the above.

I have so many ‘mottoes’: It’s always something, and then, it’s something else.

That’s my long suffering response!

Another is: Patience, Persistence, and Acceptance. Acceptance is the hardest when what we ‘suffer’ is beyond current medical knowledge and treatment.

All the best to you, Joanna. You are NOT ALONE.

Hugs, ElaineD

" Patience, Persistence, and Acceptance. Acceptance is the hardest when what we ‘suffer’ is beyond current medical knowledge and treatment."

So true Elaine. Thanks for sharing.

Cliffman