What the Newly-Diagnosed Need to Know

[elephant]

Thanks JanW for taking great notes! Much appreciated here!

[Palmyra]

With my limited (4+ year experience,) with this disease and coaching my daughter, I cannot agree with Sangye's original recommendations more. Get thyself to a major vasculitis center as soon as possible. All else is a poor second. But, that being said, second is better than third! I attended a local VF meeting here in the wilds of the great plains of North Texas to find a VF (under Doc Seo and Faulk,) trained Rheumy, ready to educate all of us locals.

So many attending were being over-medicated (10-15 in our small group alone), still on high dose cytoxin or pred, risking permanent damage to kidneys, bladder and much more. He repeatedly stated that once diagnosis was made, the singular mistake he saw regarding treatment was over-medication.

For all of our brothers and sisters in the US, UK and Australia, I offer a modest request for guidance for our newest members. Get a superior diagnosis and treatment plan. It is so very hard when just starting out on this journey. Jump to that high bar, and know that you are on the right course.

Floss! :-)

[onatreetop]

Yes . yes and yes again. Be sure to give the docs all of your concerns and bring notes!! So many questions have been missed just because I forgot til after I left the appt.. I do call back and ask but then have to wait.
The other BIG mistake I made was worrying so much about the weight gain that I did to much cardio and ended up tearing the legament on the bottom of foot. lost feeling in 4 toes and feel like I am walking on rocks now. When I am on my feet to long it swells. I saw a foot doc who said try rocker shoes first. They were great for my hips and back pain went away but the foot is still messed up. The only other thing he can try and do is remove scar tissue from around the nerves and hope it doesnt come back 50/50 chance? Becareful the pred can do alot to your body and mind. Iam no superhero with superpowers. Just a wg on pred. watch me run around like a chicken with my head cut off. yep thats me.
That and a bad space bar.

[pberggren1]

Yes, while on Pred one has to take it easy and no heavy lifting. Pred weakedens tendons and ligaments, and too heavy of an exercise can tear those.

[DEE]

be careful onatreetop i over did things week before last paid for it with three days wipeout last week be careful DEEx

[pberggren1]

Most American surgeons don't even do Caldwell Luc anymore according to the speakers at the conference. They described it as being very gruesome (which for an ENT is saying a lot). The problem with surgery in WG is that you are potentially stirring up inflammatory tissue without realizing it, and that you would do something that alter anatomy that could stop the blood flow to the area -- that's how a saddle nose develops for instance, and there's no way to get that blood source back. One woman described her son who had a tumor around the ear -- but still retained nerve function -- and the advice from both ENTs was to keep the tumor in place and just wear hearing aids. They were very big on not altering anatomy -- that got repeated several times.

This was originally posted by JanW on anther thread.

[freakyschizogirl]

The problem with surgery in WG is that you are potentially stirring up inflammatory tissue without realizing it, and that you would do something that alter anatomy that could stop the blood flow to the area -- that's how a saddle nose develops for instance, and there's no way to get that blood source back.

Hmmm that seems very interesting to me!! I was never erally told how the saddle nose developed!

[JanW]

For you, Sam, it might be that you developed that hole in your septum and your nose simply collapsed from that. However, I have no hole or really any sinus problems at all, but my bridge collapsed because it stopped getting blood to the area. Another reason you should not put another person's tissue, or something synthetic, into that area for repair.

[freakyschizogirl]

I'll have to remember that when i FINALLY get them round to sorting out my nose!!

But how did i get the hole?? I did hear a whispered conversation from my ENT consultant to the registra that they may have caused it either by the first biopsy they did, all the cauterizations i've had or from some of the sprays they perscribed.

[JanW]

Absolutely all of those things could be true. Our, I suppose that tissue inside the nose could have died, causing the hole, which then caused the collapse.