Melbourne Wegners Experts?

[danny]

Hi,

I am in Melb. Does anyone know a good Wegners doctor here. I have a rhematologist and a kidney guy but they dont talk and Im not confident they know whats going on. For example, last week I started to get pins and needles / go numb in one foot and this week I have pins and needles in my other foot and they dont know what problem is. I look on web and see neuro problems with Wegners is common.
Anyone know who the Wegners expert is in Melb?

[andrew]

Hi Danny, welcome to the forum! I'm currently getting recommendations for WG docs in Sydney from my doc here in Canberra. I'll add Melbourne to the list! Hopefully will have something for you tomorrow but may be next week.

[jola57]

Hi Danny, unfortunately what you read is true. I have neuropathy in both feet and have had it now for 2 years. I have adjusted to the fact that my running days are over. At the beginning I was lucky not to break anything, I kept tripping all the time. I used a cane for over a year and now manage quite well without it. Although I seem to be stuck with the neuropathy but there are a lot of weggies here who had it and now are OK.

[Doug]

I had it in both feet from the start (or sometime in that time frame- it's not clear just when it began, six years later). The left foot cleared up fairly soon- within a year- but the right foot continued to have some degree of neurapathy until last spring (May). It almost went away, but came back to a lesser extent than before.It's not an issue, really, as I've got used to it.

The thing that continues to bother me, however (and the topic is instability on one's feet requiring a cane or support of some sort) is the looseness in my tendons that causes me to feel like my knees are going to pop out while I walk. I can get around on even surfaces without support, but slanted ones or irregular ones give me fits unless I use a cane. Unlike years ago, I accept the benefit of the cane, and don't fight it when my body tells me to use it!

[Sangye]

That looseness in the joints is the lingering adrenal insufficiency caused by the pred. Not much you can do about it without sparking a Wegs fire.

Just be aware that your joints--especially weight-bearing joints-- aren't held together as strongly. That over-flexibility (ie beyond the joint's normal range) makes it easy to damage them.

Downhill is very hard on knees anyway. They're not supported in that position. A cane is a good idea. Even better is doing any exercise to build thigh muscle (front and back). Muscles don't exactly stabilize the joint--only ligaments do that-- but they help brace the area.

[Doug]

It's worth the effort!

[elephant]

Doug, will your insurance pay for physical therapy? Of course your physician would have to order it. It would be worth the try.

[Sangye]

Good idea! They can teach you a lot of strengthening exercises that you can continue at home.

My private insurance doesn't require a doctor's order for PT. Medicare does, of course, and they limit how many visits you can have each year. Check your policy--

[Doug]

I can check into it. I'm not eligible for Medicare yet, having taken very early retirement (just short of 61- I was a couple months short of 61 when I retired).

[andrew]

FYI: Still waiting on a response regarding a contact. Hopefully will get something early next week.