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Old 05-29-2016, 08:05 AM #11
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ElaineD ElaineD is offline
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ElaineD ElaineD is offline
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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
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Old 05-29-2016, 09:22 AM #12
Cliffman Cliffman is offline
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" 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
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