CIDP and Hearing Loss
May 27, 2008 at 11:49 am
I have had CIDP for 15 years. I am now totally deaf in one ear. I have no idea if it is related to the CIDP or not. The doc doesn’t know either. 2 years ago CIDP put me into the ICU for 3 weeks. I went in with two working ears – not working really well but ok with two hearing aids. I came out of the ICU with only one ear working and 100% loss in the other. Who knows?
AnonymousMay 27, 2008 at 11:51 am
I didn’t experience hearing loss but have done some reading about it over the past few years when people have asked about it on here. There is the possibility that you could be experiencing Autoimmune Hearing loss, I recommend you do a google search because there are many good sources of information on the ‘net about it. Prednisone et al and IVIG are two of the treatments for it like other Autoimmune disease.
here is a link to an About.com page for it, it has many additional links for more information:
rarediseases.about.com/cs/innereardisease/a/011202.htm[/B] (cut and paste into a browser)
AnonymousMay 27, 2008 at 12:09 pm
I have a hearing loss and CIDP. However,I’m not sure there is a correlation. I spent 25 years around jets and things that when bang in the night. Plus, I’m getting a little long in the tooth.
The one great thing about hearing aids is the off setting. That really helps when you have to chaperon a Middle School dance or during a boring faculty meeting.
AnonymousJune 1, 2008 at 10:16 am
I have cidp since childhood…now big 40 🙂 my hearing is good …just I get sometimes buzzing and it is frustrating . I haven’t discussed this with my neuro …I always forget and other things to ask too when im there …I think I will start writting down my questions .
AnonymousJune 1, 2008 at 1:38 pm
I have tinnitus, a high pitched ringing in my ears. Both ears. It started being really prevalent around the same time as my CIDP was ramping up. I have always had brief periods of ringing since I was in the fourth grade. I was walking across a field out back and my ears blasted a high pitch for about 30 seconds. It was 1968 and I thought my head was being visited by aliens (ha-ha). I didn’t experience the pitch again for several years. In 1997 I had a two minute blast of unprecedented volume and clarity. Then I started having a “residual ringing”, which I have still today, only louder. I still get “blasts” from time to time, maybe a couple of months apart. Sometimes it happens several times a day. Whenever the ringing is loudest, frequent,and most obnoxious, I follow with an exacerbation of my CIDP symptoms.
My neuro has stated that ringing in the ears, while neurological, has nothing to do with CIDP. CIDP would not cause it.
While I do not deny his expertise, or refuse his explanation, I will stick to the point that, FOR ME, it seems like the ringing is a precursor to CIDP activity. It has happened too often to not be a coincidence.
Many of us have those feelings, or hurts, or premonitions prior to periods of CIDP activity. In many cases those signals are not related to CIDP, just signals of upcoming activity. I feel fortunate to have such a signal.
Even if it is a pain in the butt !!
As far as hearing loss itself, yes my hearing has deteriorated significantly the past four or five years, so has my body with CIDP. Supposedly there is no correlation between the two.
I have been to five different neuro’s over the past twenty years. Two were what I call “lumpers”. They said that all of the neurological stuff was inter-related. The other three were “separatists”, saying that there was a different cause for each condition. Two of the three separatists worked at prestigious research universities, the two lumpers didn’t know too much about CIDP (and admitted it honestly).
I try to be careful about lumping stuff together, but I do realize that I have ONE body. It is hard to believe that some things are not related to others. I try to be very careful about lumping.
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