Quote:
Originally Posted by ElaineD
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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Hello ElaineD,
My situation has some similarities with yours. Since childhood until early college, I had severe asthma and proned to bronchitis. I was told that i had exzema when i was a baby. I was diagnosed with Meniere's in 1983 which i still have until now...they just call it Vertigo. In fact, i was rushed to the ER during the weekend for severe dizziness and vomitting. I had a surgery on my lacrimal gland 7yrs ago. Back then, my eye doctor had me tested for sjorgrens but since it was negative, that was the end of it. My dry eyes and mouth continued to haunt me to this day...then, i saw a rheumatologist in 2011 with my painful fingers. With all megative results, she gave me Plaquenil. On to my 3rd week or month (forgot now), i just woke up with extreme itchiness in both legs with no visual symptoms (no hives, nothing in my skin just itchiness). I took different anti allergy....but the itchiness became pain. That was the start of my nerve pain saga in Oct 2011. The years to follow were diagnosis after diagnosis...right now, mmy major problem is my lungs are infected with a Non-Tuberculous Mycobacterium (NTM). I also have Bronchiectasis and Restrictive Lung Disease. On top of all these, i also have abdominal problems...
Thank you for your response to my post. I really appreciate it.
Regards.