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Autoimmune disease? - Seeking Answers
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Autoimmune disease? - Seeking Answers

Hi all.  I'm trying to find out what's causing all of my symptoms.  I have chest pain, eye pain & burning, skin rashes (sometimes painful), fatigue, sinus pain, headache, left ear ache, shortness of breath, occasional sore hands and feet, loss of appetite, and weight loss (no complaints with this sign).  I have a history of asthma, allergies, IgA deficiency, mild chronic sinusitis, high lipoprotein (a), and mild tricuspid regurgitation.  

My primary care doctor just treats symptoms and blames them on allergies and asthma.  I disagree.  I know how my body feels with allergies and asthma attacks and this isn't it.  My allergist / immunologist thinks an autoimmune disease may be possible.  My pulmonologist last year thought I might have some form of vasculitis (possibly Wegener's Granulomatosis or Churg-Strauss Syndrome) but wanted to rule out sinus and allergy concerns.  I've been to an ENT and back to my allergist.  My allergist recently sent me for blood work to test my thryoid antibodies, microsomal antibodies, and chronic urticaria index (this last test due to skin rash).  Pending results.  My pulmonologist last year recommended an open lung biopsy to test granulomatous nodules (some calcified) in my lungs but decided against that in favor of going to ENT & allergist.  

Recently had a bout of gastroenteritis (per ER doc) where a CT of my abdomen also showed a liver lesion and retroperitoneal lymph nodes.  Also, recent tests for my checkup with cardiologist showed my lipoprotein a (lp a) to be 3x higher than the normal limit.  My HDL and LDL cholesterol were normal.

I can't help but think these signs and symptoms are all related.  I've shared copies of labs / CTs with each doctor but get nowhere.  Any suggestions as to what I should discuss with my physician?  Should I return to pulmonologist and insist on open lung biopsy?  I just want my quality of life back with a diagnosis and some relief of these symptoms which affect my work and personal life.
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6 Comments Post a Comment
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434278_tn?1324709825
has anyone done an ANA?

Another option might be CFS or fibromyalgia.  I don't think anyone should rule out that there might be more than one thing going on.
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Avatar_f_tn
Thank you for your insight.  Pulmonologist checked for cystic fibrosis and alpha-1 antitrypsin deficiency last year - both negative.  No test done for ANA or fibromyalgia.  What are they?  I see my allergist/immunologist in 2 wks for a follow-up to my recent blood work.  I'll ask him about ANA and fibromyalgia tests. I'll post a follow-up after I see him.  Thank you.
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434278_tn?1324709825
ANA is a test for the autoimmune disorders.  

There is not a test for fibromyalgia.  The rhematologist checks 18 pressure points to see if they are tender.  11 are required for a dx.
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Avatar_f_tn
Well you sound like you have some auto-immune vascular disease to me.
My best advice would be to get an ANCA blood test done.
Vascular diseases can be hard to diagnose, a biopsy is usually best.
But the ANCA is also a good marker, plus an ESR blood test to check for inflammation.
The best thing is to get this diagnosed and treated as soon as.
Vascular diseases can cause all sorts off problems, some being dangerous, so the sooner tis is diagnosed, then you can have the best appropiate treatment for you condition.


Keep me posted best of luck to you
Nicola.
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1330108_tn?1333680904
I would suggest a second opinion from a rheumatologist. It could be RA, AS, lupus, chronic fatigue syndrome, fibromyalgia or one of the other 115+ forms of arthritis. Best of luck.
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Avatar_f_tn
Thank you all.  Good advice. It's time for me to be more proactive and insist on these tests with my doctors. If necessary, I'll see another doctor(s).  I see my allergist & ENT later this month.  I'm calling my pulmonologist's office tomorrow for an appointment.  I'll post again soon.
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