Stress

[Alysia]

my WG attacks also the colon which before was only "irritable".

[Danica]

That totally makes sense as to why it attacked my lungs primarilly since i was a smoker most of my life. It is now going after my nose, eyes, throat and a small issue with my right ear. I also had a long history with tonsilitous until they were finally removed when i was 17 years old.

[drz]

Sounds like there is some anecdotal evidence for this theory so far?

[annekat]

I'm puzzled. Most of us seem to have evolved this illness from the sinuses/ears. Surely research is being carried out to follow the trail from ENT to GPA? I've had two sinus ops, couple of burst eardrums through infection, numerous chest infections and asthma. Sorry if I sound naive but I am trying to come to terms with what suddenly happened to me and why doctors are so ignorant of this potential killer that they don't even consider it when faced with symptoms. I know it's classed as rare but from what I see there seems to be more and more sufferers. Could this be because doctors lack knowledge of GPA (WG)?

I think a lot of us wonder the same thing. My ENT seems competent enough that he knew about Wegeners and should have thought, during the 2.5 years that I went to him before dx, of the possibility. But I didn't go to him at all until the severe ear infection that was the start of it all, so he didn't know me and didn't know how uncharacteristic such an infection was for me. I guess he sees enough people who really do have recurring sinus and ear infections, along with allergies, which I have always had, that he thought I was just another one of those and I just happened to get an unusually stubborn ear infection. As I was growing up, I had bronchitis and asthma probably due to both allergies and other causes like stress and viruses, and some hay fever here and there, but not a lot of sinus issues and no ear infections. I did start having some tinnitus and other weird feelings in my ears a few years before the big ear infection, but nothing was severe enough to get help with, or if I mentioned to anyone, they really couldn't put a finger on what it could be. Nothing was infected and I wasn't in pain. Just a possible precursor to WG, maybe. I agree with you that the "rare" classification isn't doing all the new sufferers any good; it seems to me, too, that there are enough new cases all the time, as evidenced by a steady stream of new forum members, that a lot more attention should be paid to this disease and doctors should always have it on their list of possibilities. They definitely do lack knowledge, but they can be trained and can learn.... I've often thought that if our docs who aren't known specialists took the time to read this forum, they would know a heck of a lot more about WG/GPA than they do now...

[drz]

I think the biggest problem doctors have in recognizing Wegs even when the collection of symptoms is pretty clear in hind sight is in their orientation from their training. The basic rule in their training is "That when you hear hoof beats, don't think zebras!" They will always be inclined to consider the most common diagnosis to explain the symptoms they see.

In this day of specialization few are going to ever even be concerned with more than one or two of our symptoms. I saw several ENT doctors and they were only concerned about the scabs and bleeding in my nose. The orthopedic surgeon was only interested in my joint pain. The eye doctor (optometrist) only treated my scleritis but not being a medical doctor he was only one beside the podiatrist (who was medically trained but also not an MD) who mentioned or even considered my problems might be systemic and related. The podiatrist evaluated and treated the "plantar fascitiis" that disappeared with Wegs treatment. Podiatrists are trained to recognize that many feet problems are caused by other medical problems. He referred me to the physiatrist who checked my nerves and neuropathy to see if it could be causing my problems. The family doctor who saw blood in my urine referred me to a nephrologist. Another internist referred me for x-rays for arthritis. The nephrologist who knew I had blood in my urine started treatment for bladder infection. The internist who saw crap in my lungs from Wegs treated me for pneumonia which seemed more likely to cause my problem than Wegs.

Only when they all realized I was quickly dying and they didn't have a clue why, did all these doctors start to consider other options and search for some help to diagnose what was wrong with me. They also didn't want me to die in their hospital either since it is bad for their records so they tried to send me to Mayo Clinic who refused to take me for inpatient care since I was Medicare patient, but Mayo did agree to test my blood and urine samples and suggested I most likely had Wegs. The local hospital had no idea on how to treat Wegs so they sent me to the nearest big city hospital that had some experience treating Wegs and would accept me. There I got the necessary care to survive my severe Wegs that had attacked my kidneys, lungs, ears, sinuses and eyes.

Doctors are not likely to diagnose what they can't treat, partly because they won't recognize something they have not seen before, and because their training and inclination is to treat their patients so they will provide the treatment for what they know, even if that is not our problem.

Our best hope for quicker diagnosis of GPA are computer programs where all your health symptoms and issues and data are feed in to a program who will suggest most probably explanation for all the data. FindZebra is such a program and Wegs comes up first or second for all combinations for my presenting symptoms on it. Computerized records and using the data in them for diagnosis should greatly increase recognition of GPA. As more people also learn about it from us, more people who have our symptoms will also make their physicians aware of it, and ask them to consider this diagnosis.

[annekat]

drz, what happened to you isn't the way medicine should work, IMO. But my opinion will never fit in with this imperfect world, I guess. The computer program thing sounds great. It's too bad it takes that for doctors to do their job and treat the whole patient and not just whatever symptoms they "specialize" in treating. But all the same, I'm glad that FindZebra exists and I hope it becomes widely used.

Mayo Clinic doesn't take Medicare patients? Sheesh.

[drz]

drz, what happened to you isn't the way medicine should work, IMO. But my opinion will never fit in with this imperfect world, I guess. The computer program thing sounds great. It's too bad it takes that for doctors to do their job and treat the whole patient and not just whatever symptoms they "specialize" in treating. But all the same, I'm glad that FindZebra exists and I hope it becomes widely used.

Mayo Clinic doesn't take Medicare patients? Sheesh.

Mayo Clinic does see me now for consultation evaluation as part of their longitudinal study on long term treatment of GPA. Their web site says they will accept only Minnesota residents for Medicare assignment but they weren't willing to do my BAHA surgery so I had to go to UM Hearing clinic for that. Medicare reimbursement rates are so low that most doctors in our country won't accept it and in our area it was very tough for me to find a doctor that would agree to accept me as a new patient when I left the hospital and again when i left the nursing home. That was before they cut the reimbursement rates again. Medicare only pays a small percentage of the actual bill medical vendors send out and it is sometimes as low as 3% of total cost for services they agree to cover. Some services they just don't cover at all. If Mayo had accepted me for my inpatient care three years ago they would have had to write off about a million dollars of the charges i would have incurred if they had provided equivalent treatment. So it is easy to understand why they don't want to accept Medicare patients. They do take some charity cases from all around the world and Mayo did provide free consultation on my initial diagnosis and treatment for GPA.

This month it became extremely difficult to get my monthly diabetic supplies due to Medicare changes and further cuts in reimbursement rates. Probably part of the new "affordable health care act". I had to spend over 50 hours on the phone and make numerous calls over six weeks to try find a vendor that would sell me supplies for my insulin pump. I have always had to buy my continuous glucose monitoring supplies out of pocket since I went on Medicare. Blood glucose test strips will now become very difficult to purchase under new Medicare rules and rates unless you pay for them out of pocket. Some people get as few as 2 or 3 test strips a day even when they should test their blood glucose levels 6-8 times a day. It is very difficult and exhausting much of the time to try fight the Medicare vendor system to get the supplies and care you need. Yet for some things they waste money in unbelievable ways. I reported a fraudulent bill to them and they appear to have no interest or even vehicle it seems to investigate such events. This event happened in December where a vendor billed for supplies I did not order and no refund has been pursued or issued so far and most likely never will be. Much of Medicare money is wasted on such fraudulent claims which will become even more widespread once the new Medicaid coverage takes effect for millions of new people.

Medicare is much better than no insurance if you can find a vendor that agrees to accept it but that is going to become much more difficult with the continuing cutbacks in what they will cover or what they will pay. Medicare never has covered things like hearing aids, eyeglasses, continuous glucose monitors and many other such things they don't consider essential to your health. The only way you can get good insurance that covers these things once you turn 65 if is to keep working and keep your insurance at work. Self employed people can also do this too i guess if they can afford the rates.

[annekat]

Well, that is not encouraging about Medicare. A lot of people are on it or will be when they turn 65. It's hard to see what the point of it is if people can't get the care they need and can't afford to pay for it themselves. I wish the system could be fixed so that doctors would get enough reimbursement to make it worth their while to take Medicare patients. As for self employment, when you are a really small business like me, it is pretty much impossible to afford one's own health insurance. I am thankful that Medicare exists, though, imperfect as it is.

I have been very lucky with my health care costs since having Wegs. They have been very low, as I have had no major complications or procedures that would have run up the cost. It has mostly just been my share of office visits and the cost of the meds, under Medicare or the previous state low-income plan I was on. At the onset of Wegs, I was in the hospital overnight and had a CT scan among other things, and my share of that was only about $360.

[Reetsky]

Your stories make me visualise a huge jigsaw where each piece is a different symptom and diagnosis. However, there is a huge hole in the jigsaw - right in the middle and it can't be completed until the final pieces have been recognised by the medical profession and designed. Those pieces are the emotional and intellectual effects of trauma on the psyche due to the immediate mental and physical battering taken by the body during the first attack of Wegs, the resultant and often brutal treatment and the lack of psychological support following that attack and diagnosis.

At renal clinic on Thursday I told my Consultant that I was disappointed at this lack of support. His response was "have you thought of joining a Forum". I was disgusted but I told him I had and was in touch with the worlds most knowledgable people on Wegs in just about every continent who probably knew more than him about the disease and what it felt like to have it.

Thank you for being there guys. For the support, the knowledge and the understanding you offer to those seeking answers to what has hit them; including me.

Big Kahuna, Andrew, ace site! Well done you for your humanitarian vision.

[mishb]

A GP I saw, was in shock when I told him that I was okay with my diagnosis and had come to terms with it.
I told him I no longer stress and it is because of some wonderfully experienced people that I had found on a terrific forum.
I told him all of these people are experts in WG - because they live it everyday.

He thought that it was excellent and recommends that anyone finds a suitable forum that meets their specific needs.