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Old 07-02-2017, 07:37 PM
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ElaineD ElaineD is offline
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Join Date: Nov 2013
Location: North Carolina
Posts: 293
10 yr Member
ElaineD ElaineD is offline
Member
ElaineD's Avatar
 
Join Date: Nov 2013
Location: North Carolina
Posts: 293
10 yr Member
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Hi Idiopathic PN,

I always have to put in my oar when it comes to 'autoimmune conditions' and measuring whether or not they exist using 'the tests we have, not the tests we need.'

I have a host of 'conditions' which always seemed to be autoimmune EXCEPT I never ever measured positive on any test (passed up the lip biopsy because it didn't want to be bothered).

From infancy until my late 20's I had severe eczema, infections and respiratory problems.

When other conditions came along I treated the symptoms. "Sjogren's came first and I took Pilocarpine or Evoxac for my dry mouth dry eyes, and NSAIDs for the generalized myalgia. My Rheumatologist told me to treat the symptoms and not worry about accurate diagnoses.

Next was Interstitial Cystitis which is a inflammation of the lining of the bladder and occurs in about 50% of people with Sjogren's (which of course I don't have) That diagnosis followed two years of constant UTIs, and the UTIs continued until I began taking D-Mannose daily. I've been UTI free for 5 years.

Meniere's took some of my hearing and I also developed Anemia. I have several problems with my esophagus which are autonomic neuropathic in nature. As well as sudden blockages of my small intestine, producing horrific pain and hospitalization until the blockages spontaneously cleared.

Then profound peripheral neuropathy (I cannot walk without braces and a walker).

This was followed by a diagnosis with CVID (Primary Immune Deficiency Disorder) came next. I have IVIG every four weeks, and my constant infection/illnesses stopped.

AND my Immunologist explained that all of my 'conditions' were the result of my Immune System attacking my organs/systems, but NOT with auto- antibodies, probably with cytokines (but not known for sure).

Then I developed Small fiber neuropathy (3600 mg of Gabapentin stops the 'skin on fire' feeling).

And recently Small airway lung disease (common for those with CVID).

I have more and more gastric issues, including sudden onset of IBS.

I had a year of seizure like episodes and collapse to the ground, which seems to have left as mysteriously as it started!

So, bottom line. It is what it is. Immune Disorders often come in clusters.....

Regards, ElaineD
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