On my first test the AN (HEp-2) A was positive at 160 find speckled (that is considered low according to Dr. Brackmann)
ANA (mouse kindney) neg -40
Anti 68kD (hsp-70) positive
They did many more tests and all were neg.
Last summuer I was tested for more things.
Sed rate was 47 should be less than 30
DNA antibodies was a false positive what ever that means
CRP was 4.86 (very high) should never be over 3 and 1 is good
C0mplement component C3 180 should be 75-161
Complement component C4 was 50 should be 16 to 47
Conclusiion on last test was not sjogrens, vasculitis, not lupus
Immco Diagnostics sent serology comments that were interesting. They are long just such as anti-collagen !! occur in 22% of patients with idiopathin SNHL, 30% of patients with sudden deafness and 67% of patients with Menier's disease. If you have a fax machine I would be happy to share all of them with you.
For almost two years I took a hearing test every month or two. I have learned when I will have a large drop in hearing. I test almost daily on a site for Floyd Hearing aids that offers on line hearing test. With a set of good head phones the test is pretty accurate from 250 to 2000 range. Now when I notice my hearing drops I immediately go on 60 mg of prednisone with taper. It is the 28 days HEI suggests. This is used for AIED and Menier's hearing loss. The problem is getting the doctors very interested in helping before total loss. Dr Brackmann said you don't lose your hearing with out a reason. Even though I decided not to have surgery with him he was a ealth of information. He also told me they had a few patients that developed AIED after surgery maybe 2 or 3 to his knowledge.
My neurosurgeon does not think I lost my hearing because of the AN. She thinks AIED. A year before the AN was diagnosed I had only 60% hearing in my AN ear. Shrugged shoulders, age, loud noise etc suggested and nothing done.
I do email a lady with AIED and CH she has had them for about 10 years. It has been a real battle for her. She had to go to several doctors before a true diagnosis was made. Unfortunately she lost all hearing in one ear and a lot of hearing in the other. She will go to HEI in April to see Dr. Derybery the AIED and Hydrops expert. I am waiting and if she does will I will go.
Last summer it was suggested that I go on Cytoxan a chemo drug. I passed for the time being. I will save that as a last resort.
Yes the hearing in the only hearing ear fluctuates. As of now it is good. It can drop 30 db in a matter of days. In the deaf ear it was a slow process.
Let me know if I can help you.