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Autoimmune, Immune Deficiency, What is going on?
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Autoimmune, Immune Deficiency, What is going on?

Hello Doctor,

I am praying you can give me some guidance. My history is as follows:

Selective IgA deficiency with ANTI IgA Antibodies.
Ulcerative Colitis
SEVERE Migraines
Total Hysterectomy/appendectomy
CHRONIC Low Potassium, sometimes dipping to 2.5

I am 40 yr. old female dealing with some crazy symptoms that my doctors can not seem to put together.

As child delt with chronic respiratory and sinus infections, know believed to have been result of IGA def.

Tried to concieve (conceive) for years with several implantation losses until I took baby asa. Delivered both children as preemies.

Developed UC after birth of first child, been in nice remission with no meds for the last 4 years (with the exception of chronic gastritis).

Had a total hyster in 2009 and started Vivelle Dot 1mg patch twice a day. This is when I added migraines to my list. They were very run of the mill migraines, however over the last 4 yrs they have changes into major events. One migraine can last in duration for one month up to 6mo. I have developed all kinds of neuro symptoms like left eye droop, tingeling in left side face, balance issues, speech issues, ect. Basically stroke like symptoms that accompany my migraines. They suspected Hemicrania Continua and it seems i failed my trial dose of Indocin as i have had 3 migraines in Dec. alone.

I would like to add that my other weird symptoms over the years include,

developed allergy to sun, breaking out in full body rash
red flush across the face, cheeks, nose
blow tiny veins in my fingers and currently have visible clot (4 mo. now)
rash, bumpy "bib" area of my chest

I was evaluated YEARS ago for Lupus, but did not fit the criteria through bloodwork, however over the years, more blood work has become positive
I have two family members with SLE.

My current labs are as follows:
MTHFR, positive for one of each copy
Positive ANA 1:80 speckeled
Positive LAC, years ago
Atypical ANCA 1:160

I am not sure where to go from here, and I am also wondering if my migraines could be a result of a underlying issue that is not being addressed??? Any advice you can give is greatly appreciated. Thank you, Shannon
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sorry, for repost, trying to get this on the ask a doc forum.....
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Hi - seems like you have a type of mixed connective tissue disease, or combo autoimmune disease.  I had IgG sub class deficiency (found out late in the game) and have Systemic Sclerosis, MS, Interstitial Cystitis, Type 1 Diabetes, Hypothyroid, and also have low potassium, low D, low hemoglobin, low complement - just a low mess, with a lot of other serious conditions.

It is very hard to diagnose these diseases due to doctors relying so heavily on blood tests.  If you look at the statistics on how many people with Lupus who have one or other of the markers - it's not that high.  Same with Systemic Sclerosis.  MS does finally have definitive diagnostic tests (mine did anyway), but a doctor has to put the entire clinical picture together with the labs, images, and history as given by patient.  Some of the tests are rarely given - they're expensive, and not all doctors know to do them.  So, it can take a long time to sort it out.

If you think about it - many people have assorted symptoms and are never diagnosed with anything.  It depends on the severity of your symptoms and how insistent you are to find answers.  I have always tried to not think about my health - unless my body was yelling at me - But, alas - the diseases found me anyway.

I wish you well - if your condition warrants it - keep advocating for your health.  Never forget how important a balanced nutritious diet is, as well as a relaxed, fit body.  It doesn't always keep the doctor away - but it's so important with immune deficiency and autoimmune diseases.

Blessings, Jan
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