Originally Posted by ElaineD

So, here I am with an update:

In 2011 I began diagnosis of Primary Immune Deficiency Disorder.

In 2013 I began treatment with IVIG. It hasn't affected my Profound Peripheral Neuropathy, but I haven't had one illness since I began the IVIG.

IVIG is extracted from human blood and it takes 1000 to 10000 donors. Therefore each monthly treatment costs over $14,000. Fortunately my insurance/medicare pays for the treatment, which I receive at the Duke Infusion Center.

I have tried several things for my Profound Peripheral Neuropathy, including physical therapy when I noticed that my knees were knocking and my ankles were turning in. I 'failed to show improvement' after treatment 2xweek for five weeks. I liked the therapy and was crushed that I had not improved. My calves and ankles have atrophied to skin on bone.

I also visited a neurologist, in late August, who specializes in the neuromuscular problems of neurology. He tested me for CMT, which I do not have. Otherwise, he was only looking for causes and gave me no expectation of improving my functioning.

In the meantime, over the past two years I became aware of SFN, Small Fiber Neuropathy which affects my arms, hands, fingers, face, lips and tongue. I am on 3600 mg of gabapentin (neurontin) and that helps stop the stabbing pains in the tips of my fingers.

My Duke Research Immunologist believes that my defective immune system, which cannot defend me from infection, also attacks systems of my body, including tear/saliva/moisture, bladder, and my nerves. When I have IVIG my immune system throws a fit and attacks me with pain, fatigue, depression and itching burning skin. Talk about irony!

I keep trying to use the cane and hate it. When I tried it for about three days I wound up causing pain in my hip! I was hoping it was stop the horrible feeling of unsteadiness, but it really didn't do that, either.

I guess I'll go along until I am ready for a walker!

Otherwise my health is better than it's ever been. The IVIG keeps me well, and I have to take 2.5 mg of Medrol daily in order to be able to tolerate the IVIG which I need, and that helps with so many things.

So I'm healthy, my pain level is minimal, and I exercise at my health club, since I mostly sit at home, except for moderate house work.

Hugs, ElaineD