Positive diagnosis today

[annekat]

I think mouth ulcers do crop up more commonly once a person has WG. I had some, and I remember reading that others have. Also achy gums and teeth. All these cleared up for me with treatment. It's nice that the prednisone is having such a quick effect for Jenny in that area and I hope it is a sign that she will respond well to the overall treatment. And yes, if the ulcers had been nagging at her for awhile, I would guess that they could have been an early sign of WG. That is just a guess. But the term "smoldering Wegs" has been used on this forum for the various symptoms that can come and go for years before actual diagnosis. More commonly it is things like recurring ear and sinus infections, allergy-like symptoms, joint pain, etc. But everyone's case is a little different.

[Mikek]

Mike, do keep in mind that a chest xray does not always show enough to suggest WG. In many cases it takes a CT scan to see what is really going on in the lungs. But if she isn't coughing a lot, especially coughing up blood, or having lung pain, trouble breathing into her chest, etc., then your docs may be correctly assuming that it is only in her upper airway. I hate to think of the pain she is experiencing and hope they can alleviate that and get her started on a serious immunosuppressant soon. I'm glad to hear she got some good sleep. And do keep that Viagra in a safe place, but where you can easily access it!

I shall put it away for a rainy day and in case its a long time, Ive written some instructions.

[annekat]

I shall put it away for a rainy day and in case its a long time, Ive written some instructions.

Make sure you check the expiration date, and make a point of using it before then!

[Mikek]

Thanks for that information, Anne. A few weeks ago, Jenny had the most awful Gingervitis. Her gums swollen up like strawberries. Our dentists said it was the worst she'd seen. I can see now that this is all part of the bigger picture.

[Mikek]

Just hope that my expiry date doesnt come first.

[mishb]

She had a chest X-ray late last week and its sitting here in my lounge room. I think that her doctors have had a radiographer's report sent to them because they had a conference about her case on Friday. The 'stand in' rheumatologist (the top guy went on leave for a month on Friday) told me that they believe that the problem is constrained to the upper airway at this point. I've looked at the X-ray and can see no spots. She not about to drop dead as she's happily doing household chores but with the aid of painkiller pills and coffee. I may have to start looking around for a younger woman, I've had this one 50 and she might just be ready for the knackery!

Sorry Mike, I think you are stuck with this one for quite a while longer

Just untie her from the vacuum cleaner every now and then..........on higher doses of pred, she will feel like she has the energy to do anything, but then she will crash and probably ache all over.

In regards to the mouth ulcers, I also had many before diagnosis and the sore gums and the feeling that the teeth were actually moving.......it all came good after pred.
I still, after four years, cannot breathe through my nose and have to sleep while breathing through the mouth. Unfortunately, I have to wake every hour or so to have a drink of water because the mouth is so dry.....it gets easier.

In regards to ulcers, I hope the hospital also put Jenny on a heart burn/acid tablet because pred can create stomach ulcers, reflux etc. My hospital never told me this and I only learnt from this forum.

I hope she (and you) have a lovely, painfree weekend

[Mikek]

Well I hope that I am! It's one of those beautiful sunny winter's days and I managed to coax her out for a few minutes' walk along then river. She'd not been away from our property for a few days and she enjoyed the walk. It must have totally knackered her as she's asleep now. The information about the mouth ulcers does suggest that she's had this WG for quite some time brewing away. When we see the doc' on Tuesday, I will mention the stomach acid issue and thanks for that input. I should like to have your opinion on another matter if you would. We've been thinking about downsizing for a while and planned to buy into a retirement village and had Bribie island in mind. Now that she's seeing an ENT doctor and rhumatlogist in Hobart, both of whom have our confidence, maybe we should move into Hobart. How frequently do WG patients have to see thier doctors? for us, a trip into Hobart is more than 100km round trip. Another thing, can I claim a carer's allowance from Centrelink?

[mishb]

My mum lives in an over 55's gated community (that is what they call the retirement villages now) on a golf course and absolutely loves it. She has so much to do everyday........and her unit is beautiful.

When I was first diagnosed I was travelling to the City once every two to three weeks and then it went to once a month and then (after about 12 months or so) I went to six weekly and then three monthly and I am now at six monthly. I have bloods done every 4 weeks and see my own GP each month, in between the months that I don't see the guru's in the City. My Aunty lives in Hervey Bay and to see her rheumatologist, she has to travel for hours to Brisbane......just saying, even though Bribie is lovely, it may not have anyone close for Jenny to see and she would also have to travel to Brisbane which would then be a 2.5 hour round trip.

Wegener's is probably a condition where you would be able to get Carers allowance. You would need paperwork from her doctors saying that she needs your continued care, but if she is able to get out and about etc, then it may be difficult. I have WG but I work full time, so don't need a carer.......and hopefully, never will, even though my husband is wonderful and does everything for me, when I am at home.

[Alysia]

Hi Mike,

your love to Jenny is so beautifull...

there is a song in hebrew saying that love can prevail everything.
with my poor english Im trying to translate to you some of the song's words:

Between the dark and the occult
In our bitter world
They say there is still hope
Call it love…

Between confusion and disaster
You know there is a solution
Call it love...

There is love inside me
And it will wakes up and touch
Filled with love
And it will prevail

Im leaving the practical issues to the more knowledgeable here...

[Mikek]

Michelle, I hope that I'm not pestering you - you're local (ish) to us and so helpful. How close to a normal life can we expect to get? Jenny, in the past looked after our ornamental garden and I grew the vegetables. We have ten acres of garden and know that the time has come to downsize(I'm almost 70 but not really grown up). With the family grown and mostly gone, having a largish house is lunacy but when you've been in a place for while accepting common sense is a struggle: a move soon is inevitable. Jennys WG is going to be the catalyst that spurs me into action I guess and I'm thinking that an apartment in the city makes a whole lot of good sense.At the moment, I cant envisage Jenny gardening again but the fact that you are able to work suggests that I may have a too gloomy mental picture of what the future may hold.