Diagnosis

[jola57]

Hello Shannon, I share your hearing trouble and can relate to the terrifying moments. Unfortunately for me both medicines have not restored my hearing to what it was before. When I tried the hearing aids even my tinnitus (ear ringing) was gone but I just didn't feel I need one as yet. Your balance should come back once the inflamation is under control. Do you have any other symptoms, how was WG diagnosed.

[Doug]

It's like playing 'whack-a-mole' (Whack-A-Mole, Online Fun, Dorney Park)

What a hoot! Much more fun than the whack-a-mole games in pizza emporiums (emporia????) Plus you can go for in in the privacy of your own computer place.

[Doug]

The hearing loss is very stressful. I lost hearing in my right ear due to a severe media otitis infection during my run in with herpes zoster. (Oh yes, as a Weggie, you will be more susceptible to infection the rest of your life, but never so much as when you are in treatment, or, after things stabilize medically, any time you become run down.) The worst part is loss of stereo hearing. When my cellphone rings, it better be where I know where it is because I hear it but can't gauge where the sound is coming from!

As you can see from the avatars and comments in this formum, there are lots of animal lovers (whack-a-mole aside!). Pets aren't animals but members of the family long before they pass or have to be euthanized to spare them pain: I, too, am sorry for your loss. That's a long life for that breed.

Anyway, I hope we regulars on this forum can be of help as you work through the issues your illness brings up. I hope, too, you have a very supportive boss and good medical coverage. That, plus a good support group or two will help you through this unsettled and unsettling time.

[Shannon T]

The balance restoration is great to hear. Thank you.

I have had lumps that just appear on the top of my hands. They swell and are painful. The last time it happened to my left hand (left handed) and a tendon was severed to ring finger. Surgery will be required.

Then I would awaken in the morning and would experience significant pain that was not there the night before, shoulder, ankle, knee, horrible fatigue, chest pain (had to use wheel chairs at the medical center 4 times because I just could not walk). Dizziness comes and goes. Blood red eyes. Sinus infection, nose draining for weeks, cough.

Diagnosis by Rhuematologist - used ANCA test as indicator along with head MRI showing sinus disease and prominence in brain thought to be arachnoid cyst. He said a definate diagnosis would require a biopsy. Said one could be taken of sinuses but did not think it was necessary at this point. Cytoxan starts Monday.

Thank you for your response.

[Sangye]

Hi Shannon,
Nice to meet you -- I'm glad you got diagnosed so fast and found this group so fast, too. I'm so sorry to hear about your dog Annie. I hope your heart heals quickly, because it's just devastating to lose an animal.

The lumps on your hands don't sound like Wegs, though. (Well, at least I haven't heard of that symptom. There are so many!) Your other symptoms sure do, so it's possible you have an overlapping autoimmune condition.

Anyway, I'm glad you're starting treatment right away. Keep us informed--there's a lot we can help you with, and this is a great place to just vent, too.

[coffeelover]

Shannon,

Welcome to the group. I have a quick question....are the "lumps on your hands" ones that come on suddenly like a swelling?
Prior to my diagnosis, I would get swelling areas that would come and go in different areas of my body. (hands included) I decided that weather changes were a significant factor in my "traveling pains" as I called them. I told people I was just like cattle in that I always knew when the weather was going to change and knew when it was time to get to the barn before the storm hit.
My "barn" was to relax and do nothing until the symptoms passed. Which they never completely did. I was originally diagnosed with palendromic Rheumatism and put on medicine(hydroxicloroquine-a malaria drug) for that that helped with these pains, but after my stenosis surgery, my rheumy decided to do further testing and diagnosed me with WG.
Anyway...just another WG individual story. We are all so different, but yet the same.
Lisa coffeelover

[Sangye]

I told people I was just like cattle in that I always knew when the weather was going to change and knew when it was time to get to the barn before the storm hit.
Lisa coffeelover

Oh, no... It wasn't bad enough that we implicated innocent rabbits, but I can see that now we're gonna spin cattle into our Wegs web.... Like "Which came first, the rabbit, the cattle or the Wegs?"

[Doug]

Well, between semesters at university, I did work on cattle ranches. I was exposed extensely to bovine "stuff". Once a dairy cow ("Honey" the Jersey) mistook me for her calf and licked my hair with a juicy, rough tongue. Ick! I never was a country kid, though horses are great!

[Jack]

The lumps on the hands are just another Wegener's symptom and will go with the immune suppression treatment along with all the other symptoms. At least, mine did! I had three different types of lump, some looking like warts, others joint swelling and my hands used to bleed on the steering wheel! Yuk!

[coffeelover]

Thanks Jack! It is always good to know that I am not going crazy with these odd symptoms of WG.

Doug I knew a Nebraska boy would have a cattle story, after all aren't you in cattle country?

bunnies have been exhausted, so cattle it is? ha ha
LIsa