Affects on smell?

I have Primary Antibody Deficiency. I am deficient in IgG and IgM. I am treated with 35 grams of Immunoglobulin infused by a nurse, every 4 weeks.
The restores my antibody level and I no longer am sick all the time. I will have this IVIG for life.

Unfortunately my deficient Immune System ALSO ATTACKS the organs and systems of my body, primarily my nerves causing neuropathy. I have profound peripheral neuropathy affecting my lower legs and feet. I am completely disabled, wear leg braces, and walk with a walker. My lower legs have atrophied significantly. I also have severe Small Fiber Neuropathy which is reasonably controlled by 4200 mg Gabapentin daily.

My moisture system (tears and saliva), my lungs, my bladder, my hearing and my gastrointestinal system have all been attacked by my Immune System, nerve damage resulting. My Duke Research Immunologist, who specializes in my Immune Disorder, says that my Immune Systems uses Cytokines to attack my body. My husband is also a Research Immunologist, and he agrees with this diagnosis.

There is no treatment for the attack by my Immune System on my body, unfortunately. When my Immune System is carrying out an attack this causes an Inflammatory Response. Inflammation causes Pain, Fatigue, and Depression.

Because I also have severe Osteoarthritis (knees, hips, shoulders, neck and hands) I experience severe pain during these Inflammatory Attacks.

Ain't We Got Fun?!

Regards, ElaineD

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Hi @jordanabrams30, I have small fiber PN with only the numbness. I've had the PN for 20+ years but only was diagnosed at Mayo within the last 2+ years. I've always thought I've had a good sense of smell but it may have lessened over the years. I can still smell the faint odor of ozone from my SoClean CPAP cleaner when I open the lid after it has run it's cleaning cycle so I guess it's still fairly sensitive. Good luck with your up coming appointment at Mayo...you are in good hands. I know we are all a little different but I agree with @artscaping and others here, just keep learning as much as you can about your health conditions and stay as active as you can.

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Hello Elaine,
I have not been diagnosed yet with SFN but I suspect I have it. I have had burning in my arms for a few years but off and on. After breaking my left arm in a fall, I experienced increase burning in both my arms especially at night. I suspect I have an autoimmune issue because I am catching every bug around. This is the second severe cold around since Christmas and a stomach flu. Of course I also experience fatigue and depression along with the pain. Is your Duke Research Immunologist local. I would like to maybe get a consultation. Thank you for your help!
Elisabeth

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@johnbishop thank you for the information and the support. I am definitely someone who will go full boat to find alternative treatments should conventional medicine not work. I know about the alternative vitamin regimen you have recommended to others, and I have also found a company here in San Diego that believes they have a cure for peripheral neuropathy that will go through a phase 3 trial this year. So much great research going on, I just hope to get clarity on why I am going this path if st all possible. Thank you for the support

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Interesting! What is the company name in San Diego. Love to see what they are doing.

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Wisantor.com their initial testing is for diabetic peripheral neuropathy, but they believe the mitochondrial issue is the same and can be applicable to other forms including idiopathic.

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@johnbishop as a follow up question, do you know if the Mayo Clinic in AZ does the skin biopsy? I know you are a patient of the Mn one but just curious. Thank you

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@ericvnelson, @jordanabrams30 I think this is the link to their site - https://winsantor.com/

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