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Old 12-16-2011, 10:51 PM   #1
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Should I have the autoimmune labs done?

My ENT just ordered a ton of labs for autoimmune problems. There is a strong family history of autoimmune disorders. He is currently treating me for mastoiditis, and hearing loss. Do the benefits of knowing you have autoimmune problems outweigh the risks of labeling yourself with pre-existing conditions? Any advice would be appreciated.

 
Old 12-25-2011, 07:26 PM   #2
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Re: Should I have the autoimmune labs done?

I can't speak to the pre-existing conditions part as I am not knowledgeable about insurance. However, I would definitely want to know. Especially since your ENT may want to tweak the treatment accordingly. If I remember from another board, you are a nurse too? Wouldn't it drive you crazy not to investigate it??? Best of luck to you.

 
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Old 12-26-2011, 08:29 AM   #3
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Re: Should I have the autoimmune labs done?

Thanks! It is driving me crazy not to have answers. I don't want to make myself uninsurable if I ever need to get private insurance. In 2014 the insurance companies will not be able to discriminate with pre-existing conditions, but I plan to work full time until then. I feel like the ENT has limitations on how to treat. He admitted that this disorder is something they "throw a lot of things at until something works". The lab results may show I need to see a rheumatologist or a neurologist. I am also reading up on otologists. There is one at USF who is supposed to be very good. You are right...as a nurse, I need to keep on investigating!

 
Old 12-26-2011, 09:31 AM   #4
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Re: Should I have the autoimmune labs done?

That is great that you are still able to work! What kind of nursing do you do? I normally work in a critical care float pool and have been unable to work since my symptoms started - left mid-shift and have not been back since. The first line of treatment - steroids have not worked for me - but I am started imuran now and am really hoping it is a miracle drug for me and that I am able to return to work. I think it is more likely that I will get somewhat better but not better enough to return to such an intense environment, may need to find an area of nursing that is lower key. It's hard to think about leaving my hospital though, I have so many great co-workers. Anyway...

Have you looked into seeing an immunologist? It is such an awesome specialty, in my observations. The one I saw is a straight-up immunologist, not an allergist, and it was amazing how quickly he was able to diagnose me after so many other specialists were unable to. He said that the field of immunology has changed dramatically in the past ten years and he seems to have a lot of information about diagnosing autoimmune inner ear disease (and others) that has not yet made it to all of the medical literature and he said that a lot of ENTs do not yet realize fully the role of the immune system in a lot of inner ear problems. It sounds like your ENT is trying hard to figure you out, but if you find a good immunologist they may have the diagnostic upper hand.

Good luck! Keep me posted.

 
Old 12-26-2011, 09:31 PM   #5
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Re: Should I have the autoimmune labs done?

Great information. I will google search immunologists. My ENT's wife has Lupus, so he seems to understand that link. My mom had discoid lupus, ulcerative colitis and a seizure disorder they said was cause by collagen disease. My sister tested positive for ANA and has a lot of problems with mouth sores. My former primary doc said I had gluten intolerance, and I went gluten free for 3 years, but didn't really see a difference. Two GI docs disputed his diagnosis. Still just think it is IBS.

I hope your medication does work for you, and you can go back to work. I was a teacher until I was 51. Then I went back to LPN school. I was an EMT in my 20s, and always wanted to go back for nursing. I work in long term care, which is my nitch. I love working with elderly, and especially end of life issues. I would think working in a clinic could be a slower pace, at least until you get your stamina back. I am pretty healthy, just this ear issue has been a pain.

Keep me posted as well!

 
Old 01-02-2012, 04:51 PM   #6
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Re: Should I have the autoimmune labs done?

yes, it is totally worth it to have those labs done. I had been having joint pain for awhile and was told it was only "growing pains," but when i went in for my 15 year old check up my doctor decided to run labs to check for autoamune disorders and it turned out i was ANA positive (which means my immune system never turns off so it attacks my joints)and my ANA disorder is very sinilar to athritis. I am currently taking plaquinil and doing physical therapy. i am feeling much better and so yes it is totally worth it!

 
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Old 01-02-2012, 10:13 PM   #7
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Re: Should I have the autoimmune labs done?

Thanks. I will be getting labs done in a couple weeks. The list was extensive, and cost over $1500, so I decided to wait until my yearly physical and get as many as possible done as routine labs. (CBC, Thyroid, etc). Although my ear is the problem I am dealing with, my hip joints have been very painful for a couple of years. The bone density scan showed no osteoporosis or osteoarthritis. Joint don't hurt like that for no reason. I am 56, sorry to hear you are going through this at 15. Treatments are getting better all the time, so hopefully in your lifetime it will be very manageable. Also..I lived in Milwaukee for 25 years. Moved to FL 3 years ago. Lots of memories there

 
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