General Category > Hearing Issues

okiesandy

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Windsong:
HI Sandy,

I got time out while posting a reply to you so here goes my second attempt.

Thanks for all the info. Wow, you did have a lot tests didn't you. I have only some of mine at home. The mroe detailed ones were coming later and i forgot about that, but no one called me about any findings so presumably they were ok.

My c3 and c4 were fine though and the ANA was 180, then and labelled postive but i think that's a low pos.

I'm glad you found some new docs and good help. You've been on quite a journey with your hearing. I heard that they do sometimes give chemo for that.

Thanks again. It's nice to be able to get info like this. So much of what we go through can be quite bewildering.

All the best,

I forgot to post under your previous reply so my apologies if this comes up as a new post
W.

okiesandy:
Your ANA is a little higher than mine. Still worth looking at as a marker. I would seriously push your doctor toward some kind of treatment to help perserve your hearing. You have somethng going on.

Do you remember if you had Anti-68 kD (hsp-70) antibodies test done? These were really my only positive results besides the higher CRP two years ago.

What ever you have you are losing your hearing and the doctors are just letting it happen. They think I have some other autoimmune issue and can't figure out what it is. Not that any body really digs into it. I am totally sick of doctors at this time. Too little, too late is their motto. I have taken an in your face attitude lately and it is working a lot better than my previous attempts to get someone's attention. I had to ask to have my blood tests done by Immco Diagnostics. Positive ANA denotes the presence of autoimmune disorder. Also, had to ask for the second series of blood tests.

You hang in there and keep pushing for your hearing. It is precious.

Sandy

Windsong:
Hi Sandy,

Thanks so much for taking the time to share this with me. This whole autoimmune factor keeps coming up with me regarding a number of things in my health and iso something I am pretty convinced plays a role in a few diagnoses I've had the last tne yrs. More recent research seems to point that way at least as far as the focus of many studies. Certainly lupus and ms and sjogrens and such along with my Ana count was first mentioned by a dear rheumatologist in the mid 90's. Unfortunately, shortly thereafter i had to switch my family doctor to someone in my own town  so the referrals now are to new people for some things.

I don't know if the specific tests which were found positive for you are actually availlable up here? I will ask.

Your c3 and c4 counts are done differently than up here? mine are 1.12 and .25? (G/L)

Do you know what ENA tests are? I had a bunch of them done but that was negative. My anti ds DNA was low really at 40.4 and up to 200.0 is ok.
(they made changes to the reference range at the beginning of June last year).

The precise causes of so many ear disorders isn't really known is it? Basically they treat the symptoms and even that doesn't work most of the time.

We do have a menieres clinic at the hopsital out of which my neruotologist works and I know he has a strong interest in hearing preservation, as for example he wrote a book about how drugs affect hearing with respect to otoxicity etc. It's all so ompclicated really the biochemistry of the inner ear.

I've even heard that hypoxia can play a role and a host of different things. One can get dizzy pondering all this lol.
I am glad you were able to get to the bottom of your situation and sincerely cheer you on in preserving your hearing!

I am still following up on my previous tests as i really don't know which were done that were more detailed. Perhaps a new set during this exacerbation of mine would be a good idea. In any case I am having an mri soon to rule out some things as I have other things going on in my nose too.

Funny how male voices are easier to follow? Some female announcers on tv are totally gobbledygook for me rofl...

Big thanks,

W.

okiesandy:
windsong

I dont know how long my hearing will be preserved. It is up and down. I am just buying time at this point. At least when it has gone to the pits they have always been able to bring it back. Only having one hearing ear is a breeze compared to losing all hearing. I am very protective of the only sound I have.

Womens voices are sometimes hard for me. I can't understand my lady boss. Wrong pitch I guess.

I am taking allergy shots and that may be helping some. Allergies and autoimmune are all tied to gether so I understand. When tested I was allergic to several things and not strongly allergic to anything.

All your doctor has to do is order the tests kit from Immuco. They are in Buffalo NY. I think my tests were about $600.00. It was worth it to me. I am really tired of the guessing.

I have no idea what ENA tests are. When you find out let me know. My DNA (ds) was a false positive at 34 my printout says -30 negative 30-60  Low Positive 61-200 Positive 200+ is strong positive

I am sometimes shocked at how many of the AN people have Autoimmune issues. Still the doctors say no connection. Yet when you get to really researching you can see there could be a connection.  Someday some smart doctor will put all of this together.

As I say try to save what hearing you have, what ever it takes

Sandy

Windsong:
Sandy,

The ENA tested for Jo_1;  RNP ;  Scl_70;   Sm ; SS_A, and SS_B.

Well, as we know all know, when we have one ear left for hearing we must guard it like the crown jewels if we can.

I have confidence in my neurotologist and his investigations. I will gently ask if he's considered the autoimmune factor. The thing is when you get down to checking out the research it doesn't come up with a whole lot of treatment. Along with the chemo and the dexamethasone i did see methotrexate as being tried. On the menieres org site there is a long list of things to try  such as foods, and so, but so much becomes anecdotal too. In any case it doesn't hurt to try a lot of them.

My latest difficulties were harder this time around because of the horrid pressure also in my ears, worst it has ever been. So far today it seems lessened which is a relief.

Please know how good it is to have this sort of thing shared here. For each person who writes about one thing there are alwasy plenty more who don't write in but benefit from it.

Keep well,
W.

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