I have recently seen an ENT surgeon as I have had hearing issues for many years which have just got worse, but they have been (what I felt) the least of my symptoms. I had meningitis, optical neuritis, encephalitis and recurring vertigo. hearing issues came and went. About four years ago I went blind in one eye and started with inflammation on the heart, in my ribs, on my lungs and varying virus nasties that hospitalised me on IV steroids and at times antibiotics. I have been on steroids and immune suppressants since the eye issue plus other medication to deal with the joint and nervous system problems. I get bells palsy in the left side and have left sided weakness constantly which gets worse when I get another virus. I've recently had shingles and my nervous system is affected and hearing loss more apparent. I am waiting for my ENT surgeon to do MRI and Audiology tests then confer with my other consultants. I have been undiagnosed for many years just 'rare and complex auto immune condition'. So a diagnosis would be fantastic news for me. Has anyone else had the diverse symptoms that I have had? Ear issues seem to be what is directing towards a Cogan's diagnosis and I have looked at case studies of Cogan's where sufferers do report some similar symptoms as mine but not anyone to the same extent. I would be grateful for any responses or feedback. Thanks
Hi, yes I have been under the same ophthalmologist, rheumatologist and neurologist for the last four years. The only diagnosis they can provide is 'rare and complex auto immune disease'. The ENT surgeon feels with the hearing issues I am experiencing, Cogan's is a likely diagnosis. I have looked at Cogan's and yes I do have the symptoms described but seem to have others beside especially inflammation of organs. Thanks for your reply
They tell me I have had tests for the top 40 auto immune diseases and I do not have distinct indicators for any specific one. I do however have symptoms that straddle many. Vertigo is a real issue for me also and I know now that when I start with vertigo something bigger is on the way. I've just been in hospital with shingles and on antiviral I and antibiotics IV. Discharged with oral version. really affected my nervous system and im jittery and needles are extremely painful at the moment, even though i have blood tests every month and never had a problem. The shingles went but on the opposite side of my body in the same place the pain has continued. I was given pain pads for ten days. GP then saw me and thinks mastitis. So im back on antibiotics, I see her again tomorrow because may need to go to the breast clinic. Since shingles i have off my usually medication of ciclosporin and mycrophenalate both immune suppressants.
I also take prednisolone, celebrex, pregabalin, calcium, candersarten, folic acid and have B12 injections 3monthly. I have constant flu like symptoms and the moment, very sluggish and lethargic. I suffer alot with chronic fatigue and did sleep constantly for a week at the start of the shingles but now mind quiet and inactive but im not really brain tired. I live in the UK and my issues have spanned over 20years, since having meningitis and encaphalitis in 1995. I work but my 'illness' causes numerous absences. Thank you for taking the time to reply and share information. I have tried other auto immune sites in the past but not really found a connection. Being undiagnosed for so long has meant it has been difficult to find common ground with others.
Firstly, I'm so please to hear you are in a good spell. I know how that feels, mixed with the thought of how long will it last and what is around the corner. I am really grateful for your ramblings, it is just what I need. I am a fish eating vegetarian, not eaten meat for almost 35years. I am an organic consumer as much as possible and I avoid any parabens or pollutants. Having said that I fill my body with synthetic drugs! Prior to the blindness starting four years or so ago, I took medication as and when I needed it. When the eye condition came on, which literally was going to bed with a bit of eye pain and waking up to find my pupil glassy, fixed and staring blindness. It was frightening and the only 'control' has been steroids and immune suppressants. When I've tried to taper down if I go too low the blindness returns so I know I'm stuck with them. However other things I'm willing to give a go and try and I do as much as I can.
I agree about the calcium, folate and B Vits, I have been considering that for a while, especially in good health spells when brain switched on and I can be practical. Then I get an illness or flare up and can't seem to work basic things out. I had a 'virus' in September and was hospitalised for 3wks. I completely lost the use of my left side including bells palsy. Face and upper body returned to ok but left leg just dragged and I could not read or recognise numbers, it took months before I could confidently say a number out loud, I've been in rehab physio since and just started to feel getting somewhere when shingles hits. I really do need to review diet and take your advice, thank you for reminding me and pointing it out, I will note it down before brain fogs over!
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