I was diag.w/ cogans syndrome,16 years ago at 21 years of age.
My hearing loss was sudden...along with sever vertigo and ulcers
Developed on the cornea of my eye's
The first treatment was 80 mg prednisone per day along with 25 mg of antivert twice a day.
After the first 2 years of treatment I had become depressed...
The "depression" I think, was caused by the predisone...along with having this syndrome with out any sign’s of relief.
After becoming depressed the doctors decided to try toxic med.’s
(methotrexate) ...still there was no relief ...
I stopped the treatment because I felt they were not helping
I recently started taking 10 mg of Valium once a day along with 25 mg of antivert twice a day I am happy to say that my vertigo episodes are much less frequent. And also my hearing has came back ...(its not 100 percent but I can communicate with others with out much difficulty. I am sorry to read that your Nephew is having such a terrible time with this "syndrome"... this is the first case I heard of that attacked the heart...I Feel for him, and wish, that he see some sighs of relief .
I think that if were a more common syndrome more research would be done.
Till this day I have no knowledge of how this syndrome was activated.
One said exposure to radiation type B or type A ...
One said it was brought upon me by trauma.
Another said a virus that found its way into my central nerve system. Who knows...(I am open-minded for those that might know the cause.
Is there any funded research being done (more that just the diagnoses of the syndrome?
Do we even have the right diagnoses for that matter?
There is so much I want to ask. PLEASE write back ANYONE!
I would love to get or share some info.