I agree that you must have an active case of WG right now, because of the joint pain in particular. I would have thought that would have cleared up for you, were you getting WG specific treatment.

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Look at the resources available on the link above. It isn't clear where you live. You don't have to give us specific information beyond state, province, country- just something that allows people to get back to you with specific information about specific doctors (oftentimes) and institutions.

The insurance issue makes me think you are in America somewhere. States have departments of health and human services (they may go by different names, or variations on that name), social welfare services for the old, poor, uninsured, and numbers of conditions. WG, by new amendments to the Disabled Americans law, passed by Congress in January of this year, makes people with auto-immune diseases disabled by definition in Federal law. That can be especially helpful to you if you contact your state (or Social Security) office to seek some sort of help on medical care and bills.

It's a new enough law, you may have to be the one who brings the amendment to their attention! Were you to run into roadblocks (and you will!), you might even have to seek an attorney's help to establish your eligibility for assistance.

This, and the other comments, give you a lot of options to consider and look at at a time you aren't in the mood or in a physical state to consider doing anything about your issues. Do you have any family member who can help, who is computer-literate, tough, and willing to help you?

I am particularly concerned that you have doctors with limited WG experience, or so it seems, Brittany Leigh. I was near death, couldn't breathe without an oxygen mask, had to be taken by ambulance to the hospital, siren blaring, light flashing. Not the way you want to go!

I went through a variety of treatments- won't go in to them here, for the time being. In the weeks that followed, from the local general hospital, to the regional hospital, to the teaching hospital, the one thing I didn't experence was pain.

I only know one reason: they had me on some sort of painkiller, an IV, a pill, I don't know what. So I know an 55-year old guy (me then) who had lung and kidney involvement, had the joint pains you speak of before I went into treatment can be made comfortable, to be made unaware of pain. It was uncanny. I kept asking, in fact, why I wasn't in pain. It made no sense to be so ill and not have pain. The nurses and doctors in three hospitals told me that that was part of their job, to keep me as pain free as possible. I came to take it for granted, and to thank the staff when I left.

WHY, then, can't your doctors come up with a combination of treatments that bring your WG into control, and numb your pain? Believe me, we on this forum really want the most detail you can provide us to help you answer the tough questions you face. A person with a potentially fatal disease doesn't need some needlenecked pinhead bureaucrats playing "We can't treat you without insurance" games. We want you to have a fair chance at a long life, doing pretty much what you want to. That's not a bit too much to hope for! Look at Cindy! A weggie planning to climb Mt. Everest!