Just Diagnosed

[Shannon T]

I was just diagnosed 4/2/09. Hearing impaired, balance horrible, chem starts Monday. Just want to know if full hearing and balance are ever restored? Hearing ability changes daily to some extent. Both inner ears do not function apparently.

I want balance enough to work, walk my dog, travel, maybe a little golf and skiing. Is that possible for many?

[pberggren1]

Hi Shannon,

Good to see you found us. The hearing issue is different for everyone. As for myself my left ear is now totally useless and my right ear has about 75% loss. Loss in both ears is due to nerve damage. Your loss right now sounds like fluid in the middle ears. Have you seen an ENT yet? What about a Rhuematologist?

My hearing loss early on was mostly conductive, but when I had my first flare up my left ear went totally dead. It was a wierd experience. I felt all sick and dizzy and wanted to lay down in a warm bed. I layed down for a while and when I got up my left ear was dead. From May 2003 to July 2004 my hearing would change in each ear. Sometimes my right ear would be the good ear and then the left one would be. In the very begining my right ear was the bad one. I blew my nose and it felt like something was puncturing my ear drum. Very painful. I still get the odd dizzy spell.

I suggest you read my post in the New Member Introduction area. This will give you a better idea.

I hope you have good doctors.

Over and Out,
Phil of the north

[andrew]

Can't comment on hearing loss. Are you affected anywhere else? I would hope that the treatment affords you some reliefe from the symptoms but it depends on whether any damage is permanent or not. 'fraid only time will tell. Usually treatment will kick in within a short time (days) but can take longer epending on how deeply the patient is affected.

I've been able to live a pretty much normal life except for the fact that the brick wall is closer now and I hit it much more frequently!

Welcome to the site!

[Shannon T]

Symptoms - main concern is hearing and balance but also experience blood red eyes, sinus disease, misc. pain in joints, fatique, weakness, shortness of breath, growths on hands that swell and are very painful, one episode severed a tendon to a finger.

Pleased to have found this forum. Thank you for the welcome.

[RCOSSIO]

Welcome to the world of WG...as you read each members profile you will notice different degrees of symptoms...mild to severe!

Although I did not have any hearing loss I do hear on occassion feel like Kate Beckinsale is whistling in my ear...WISHFUL THINKING!

Anyway...as you will see I now start calling "WG" my new "BFF" (best friend forever lingo in text world).

As Andrew mentioned the meds do work..it will take time...but with WG "patience is a virtue"

[coffeelover]

I've been able to live a pretty much normal life except for the fact that the brick wall is closer now and I hit it much more frequently!

As I am a fairly new diagnosis, I am wondering how long some of you have been working with your new "BFF"? I know there is not a cure and I have this for life, but I really want to NOT be hitting a brick wall constantly. Is there hope for some "normalcy" to last a while?
Lisa

[Sangye]

I'm a long way from not hitting a brick wall, but lately the wall is a wee bit further out than it has been for awhile. I've been on treatment for nearly 3 years (*gasp* has it really been that long?).

[andrew]

Been working with my BFF for 6 years. In fact, I think it was some time around today 6 years ago that I was moved from critical care (step after ICU) to the renal ward. Ahhh...memories....hospital food (actually quite nice except for the powdered eggs on weekends)....puking in the dialisis room...practicing breathing without oxygen tubes....being woken every 2 hours for obs....makes me all misty-eyed for days gone by...NOT!!

Oh...where was I? Oh yes, that brick wall...ouch! Just stubbed my toe on it Sorry...too much caffeine...

The brick wall got ever so slowly further away. For instance, I started practicing walking around my bed when I was in hospital. Then it was walkking to the loo, then to the dialysis lab...then down the hall...then down 5 floors (in the lift) and out the door. Now I'm bolting up the stairs at work and yelling at people when I get to the top It just takes time. You'll find your brick wall and then learn to recognise when you're about to hit it face first. The trick is to see it coming and slow down before you hit it face first.

[Sangye]

The trick is to see it coming and slow down before you hit it face first.

Yeah, I've gotten better at picking up on the more subtle clues that the wall approacheth. I'll start to get a little grumpy and I'll feel chilled regardless of the temp. If I ignore those signs, then my legs get a little trembly, I'll feel like someone siphoned out my blood and I get tearful. If I ignore all that and don't sit down right then, the whole house of cards comes down.

[jola57]

For me it being breathless, like someone sitting on my chest, then my legs get wobbly. The most ambarrasing is when I need to go for #1 or 2, I need to go now, so my first priority is to scope out where I am for bathrooms. I guess we all learn how to adjust to that wall and we can scale it once in a while but most of the time we just try to stay clear of it. Personally for me I think tha twhen I loose some of this extra 50lb I seem to have packed on a lot of this ill feeling would go away. Honestly the will is there but with all these holidays and hving a wonderful cook for a mother who just wants to braise the illness away (and boy oh boy is her food delicious)I don't stand a chance. There is just no way that I can not sample the duck with apples, or the cranberry turkey or the cheese blintzes, or pierogi, or, cabbage rolls, or beef rolls..... Now you see my dilema.