Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Suddenly Deaf in Right Ear

You are so gracious-thanks for your support in the midst of your own trials.

Hopefully you will get answers soon as well.

Hi Sue, Thanks for your thoughts and insights. Of course, my first thought was tumor... who wouldn't wonder?

I care about my health and do my best to maintain it, although some things have slidden due to our loss of income plus the added responsibility of child care-the children are precious to us...

If you read an earlier response to a reply here, you'll read about the saga of the ENT referral. I do however have an appointment with my rheumy and will request a head MRI to figure things out. She's quite proactive and astute. The receptionist for the ENT doc seemed quite compassionate and she'll hopefully get back to me early next week with an appointment time. Fortunately, their office is a 5 minute walk from where I work-I can be very flexible.

I thought I learned my lesson so many years ago with the chronic back pain I suffered with for so long. I'd suffered for about 8 years before I had a CT scan of my low spine, but it did not include the SI joints. Another 3 years passed before I got the iritis that ultimately got me diagnosed. But before then, I sucked it all up because my mom had chronic back and sciatic pain; I thought I inherited her spine. She refuses to be diagnosed for AS and will not get the appropriate tests, but her spine is already a mess as it is due to degenerative issues. She also developed hearing problems/loss in one of her ears a year ago Christmas after a head cold, so naturally I wonder if there is a genetic/autoimmune link.

I've also had tinnitus for many years and put it down to NSAIDs, and more recently began having dizzy spells with some staggering on and off since just before Christmas. It makes me wonder if these were warning signs I brushed off. I figured I was going to have my annual physical in March and would deal with it then...

So many questions right now... The moral of this story, if I may offer some sage advice, is don't leave health issues for several years, dismissing them as nothing... Look into it sooner than later...

i was cautious to even mention it as the word sounds so scary so glad you thought of it too, though its probably not it. but like you said, it is often where our minds go. just glad you're being so proactive now about dealing with it, going to the doctors. hope it turns out to be something transient or something they can easily treat.

as for putting things off about it til now, i know the thinking there. there are so many things we have to do to maintain our health, that the seemingly minor things usually end up having to take a back seat. who would have known you'd wake up one day deaf in one ear. but you're on top of it now, that's the important thing right now.

Sigrid: You are an angel to take care of children that are not yours with a disease. It is too bad their parents lack the discipline. I am sure the kids benefit greatly from being with you. In the meantime, hope you can still find time to take care of you.

Have you thought about taking a break from the Enbrel, just to clear up all the sinus stuff? I did that numerous times. My only regret being on Enbrel was that I stayed on it too long. I was on so many antibiotics, I developed antibiotic resistance. I didn't want to stop the Enbrel completely because I felt the best physically besides all the illnesses I was getting. It was my survival taking care of a baby and working. My Rheumy always advised me to stop it with any illness and then restart once I was completely better so I did. I was still able to function being off it temporarily.

I remember my ENT office ordering a test to check my hearing when I was on Enbrel. The lost hearing all cleared up with antibiotics.

Sometimes too, our diseases change with time. If you go off Enbrel, you may feel your disease is not as bad as it once was. Are you on a special diet? Diet is helping me.

Hope you feel better.

Shari

Sigrid,
My thoughts and prayers are with you.
Giving love and discipline to the children and those around you is a wonderful thing.
I sure hope that you get some help, get to feeling better!

Br'er Lon

Sigrid, I am keeping you in my prayers. I hope you get the hearing problem straightened out.

What you are doing for those kids is so wonderful. Children need to grow up in a loving and stable home. My husband and I adopted our two granddaughters when they were 10 and 20 months because their parents were so badly into the drug world. It is the best thing that we have ever done, for us as well as for the girls.

Thanks, Sue, for your words of comfort and support. I'm blessed to have colleagues at work that are willing to step in where I lack at this moment... Yes, I'm very blessed.

So here's the update...

I was able to see my Rheumy today-I called, stressed about having to drive myself to the app't next week, since Ron would be at work at that time, and I'd have the 5 year old with me, so they fit me in today. She said she couldn't help me, that I'd have to see the ENT doc but by all accounts, she said my symptoms fit with Meniere's disease, that I needed to get diagnosed, and that there was no cure or treatment for this disease.

I finally got an app't with the ENT doc, although it's next week on March 1. They may be calling me in for a hearing test before then, so that will get me in the door quicker and on my way to diagnosis.

I read up on the disease online and through the Mayo clinic pages, as suggested yesterday. They recommend a low salt diet (which I already observe anyway), and I don't drink caffeine, although there is a bit in the green tea I drink, and I'll try the diuretics they recommend. We'll see if that helps.

Thanks, again...

Hi Shari,

We love the girls and they've been a real blessing to us. I hope their parents can pull their act together, but the final outcome is in God's hands. I may have a disease, but the disease does not have me. It's part of my overcoming outlook and I endeavour to do everything I can and not let disease and disability get in my way, although modifications to my lifestyle have, of necessity, occurred.

The last 2 times I skipped my Enbrel dose, but this time I did not. I am seeing vast improvements in beating the sinusitis and it seems like a memory now compared to all the other stuff going on. I noticed that my old symptoms would come back after skipping a dose; with me, it's like by day six after my injection I'm feeling some symptoms and waiting for day 7 so I can take my next dose.

Good news is that my Rheumy renewed my prescription-I had been concerned that having had iritis after a 6.5 year reprieve might have meant that the Enbrel was no longer helping me... She reassured me that the Enbrel was still working so I'm quite relieved...

I've tried the NSD but it didn't help. I'm negative for coeliac disease so other than trying to eat sensibly...

You've made some excellent suggestions - thanks for your support...

Thanks, Lon. I really can say that I'm feeling the effects of the love and prayers coming my way from you and the others. Although it was a difficult day, I found I had more resources to make it through.

God bless you, my dear friend...

Hi Donna, I thank you also for your love and prayers. I'm trusting God with my life, with all our lives, and it's a relief to see that things are moving forward now. I'm still deaf and the ear hurts some, but I plan to try some of the suggestions made on the Mayo Clinic website and see if some of the symptoms lessen in their severity. At least the dizziness and vertigo were less intense today.

Sounds like you and your hubby are the real angels in adopting your granddaughters. To think, you're finished with the diaper and formula stuff at this point in your lives, and here you are all over again. God bless and honour your commitment to your family... I know a great deal of anguish went on behind the scenes in getting to the place where you could actually adopt them, and I know firsthand the animosity that comes toward you by the parents who think you're trying to take their children away, when in fact, you're trying to help them out by keeping their children out of the "system" and in the family where they'll be loved and protected. There's a lot more I could say, but know that we understand... God bless you...