Stress

[Reetsky]

Hi Guys

medics have told me that stress is not a contributing factor to GPA (WG). I'm not so sure. What do you think?

[Reetsky]

Most of us seem to start symptoms with Sinuses. It would be interesting to know how many of us had Tonsils/Adenoids removed previous to onset of WG and could this be a link n the chain of symptoms?

[annekat]

Hi Guys

medics have told me that stress is not a contributing factor to GPA (WG). I'm not so sure. What do you think? I would say that is a bunch of BS and they don't know what they are talking about! Just watch, during your recovery, you will find that any extra stress will almost always increase your symptoms and you will feel worse. At least that is the case with me. And I also believe stress can be a trigger in getting GPA in the first place, along with other triggers, perhaps.

[annekat]

Most of us seem to start symptoms with Sinuses. It would be interesting to know how many of us had Tonsils/Adenoids removed previous to onset of WG and could this be a link n the chain of symptoms? I never had my tonsils or adenoids removed. My sister did, and does have some of the same symptoms I had before being diagnosed.... just not as severe or pervasive, but enough to concern her that she could get WG. I have, of course, told her it is not likely.

[Pete]

Still have my tonsils and adenoids...

[drz]

Hi Guys

medics have told me that stress is not a contributing factor to GPA (WG). I'm not so sure. What do you think?

I think the consensus among most patients and doctors is that stress is a contributing factor to most things including Wegs.

[drz]

Most of us seem to start symptoms with Sinuses. It would be interesting to know how many of us had Tonsils/Adenoids removed previous to onset of WG and could this be a link n the chain of symptoms?
My weg expert at Mayo said my years of sinus and ear problems probably set me up for Wegs or contributed to me getting it.

[Reetsky]

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)?

[mishb]

I believe stress to be the biggest factor for me.

I had a serious car accident, and then the week my father died, a routine mammogram found lumps in both breasts that needed a biopsy. Three things all piled into one big stress load........is what I believe set it off for me (the night of my fathers funeral).

I also suffered from ear infections and tonsilitis most of my childhood, and then sinusitis in my early adulthood - but I did not have my tonsils or adenoids removed.

My ENT's theory is that it attacks the place that is the weakest or the place that the immune system has always worked hard to fight infections on - therefore as I/we have ear, throat and sinus infections in early years, this is where WG has taken hold - on the vulnerable area.
With this theory in mind, I wonder if the lungs are attacked with people who always suffered chest infections or bad colds when younger, and with kidney's, did it attack people who suffered from UTI's in earlier years.

[drz]

I believe stress to be the biggest factor for me.

I had a serious car accident, and then the week my father died, a routine mammogram found lumps in both breasts that needed a biopsy. Three things all piled into one big stress load........is what I believe set it off for me (the night of my fathers funeral).

I also suffered from ear infections and tonsilitis most of my childhood, and then sinusitis in my early adulthood - but I did not have my tonsils or adenoids removed.

My ENT's theory is that it attacks the place that is the weakest or the place that the immune system has always worked hard to fight infections on - therefore as I/we have ear, throat and sinus infections in early years, this is where WG has taken hold - on the vulnerable area.
With this theory in mind, I wonder if the lungs are attacked with people who always suffered chest infections or bad colds when younger, and with kidney's, did it attack people who suffered from UTI's in earlier years.

Interesting theory and it makes intuitive sense. My Wegs attacked all three because i have had issues in those three places before Wegs, with sinus problems, ear infections, kidney damage, and lots of bronchitis in my history.

[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.

[Barbara N]

I believe stress to be the biggest factor for me.

I had a serious car accident, and then the week my father died, a routine mammogram found lumps in both breasts that needed a biopsy. Three things all piled into one big stress load........is what I believe set it off for me (the night of my fathers funeral).

I also suffered from ear infections and tonsilitis most of my childhood, and then sinusitis in my early adulthood - but I did not have my tonsils or adenoids removed.

My ENT's theory is that it attacks the place that is the weakest or the place that the immune system has always worked hard to fight infections on - therefore as I/we have ear, throat and sinus infections in early years, this is where WG has taken hold - on the vulnerable area.
With this theory in mind, I wonder if the lungs are attacked with people who always suffered chest infections or bad colds when younger, and with kidney's, did it attack people who suffered from UTI's in earlier years.

I had my tonsils until a few years before being diagnosed. I had WG for many years before being diagnosed. I had two operations a few years earlier to reconstruct a shattered nose and jaw and the doctor,,now deceased, used me as a guinea pig and put home made un -approved soft palates. I was 6 weeks in the hospital and I rejected the transplant twice but the feed tube they gave me in a main vein got infected and I got another rare disease the Rhototorula(sp) that killed my kidneys then slowly went for my heard. It is a fungus in the blood that you can only get from and main vein IV. They think I got the WG from all of this but I think I had it before because >I was always going deaf and having operations on my ears and started to go blind add the kidney trouble from the RHT and you basically have wegerners, then a few years later they discovered that I had -WG. It does attack the weakest place because every time I had surgery a few months later something came and ate all of the new part.I now don't exist in the files of the first hospital because they screwed up really badly so they say they have no records of me ever being in that hospital, WE were there Xmas, New Year and three Kings. I never had colds or chest problems as a child and was never sick.

[Debbie C]

When I was a child (About 2 yrs old ) I had whooping cough and broncitsis (sp ?) at the same and almost died, I have also had pnemonia a couple of times and my involvement is basicly in my lungs. I also had ear infections (which I believe was wg in hiding )was given anti-biotics 3 different kinds and ended up very sick with c-diff.But lately my eyes have been bothering me and also I've been getting headaches and dizzy. I had a ct scan of my brain which should a 1 cm white mass on the left side of my brain but no one seems to concerned about that either. I had in infartic stroke and 5 tia's at sometime which I did not know about. So there may be something to wg hitting the weakest point , but then why would there not be people who are really sick with other diseases also end up with wg ?

[Reetsky]

I also had whooping cough as a baby. The symptoms and synchronicity just keeps growing with us on this forum. The more questions I ask the more posters respond with similar tales.

[annekat]

When I was about 5, my parents were told I could not use feather pillows and had me outfitted with a foam rubber one. This was before today's polyester fill. I don't remember having symptoms, but the doc said I was allergic. I had a lot of bronchitis as a child and a fair amount of asthma and allergies that were not properly dealt with. I had a lot of stress as a child and as an adult and think that it played a role in the asthma, too. Nothing like whooping cough, though. And no ear infections that I know of until the big one that got me at age 56 and was probably the onset of Wegs.

[Barry Forshaw]

When I was a child (About 2 yrs old ) I had whooping cough and broncitsis (sp ?) at the same and almost died, I have also had pnemonia a couple of times and my involvement is basicly in my lungs. I also had ear infections (which I believe was wg in hiding )was given anti-biotics 3 different kinds and ended up very sick with c-diff.But lately my eyes have been bothering me and also I've been getting headaches and dizzy. I had a ct scan of my brain which should a 1 cm white mass on the left side of my brain but no one seems to concerned about that either. I had in infartic stroke and 5 tia's at sometime which I did not know about. So there may be something to wg hitting the weakest point , but then why would there not be people who are really sick with other diseases also end up with wg ?

I wonder if it might be the other way around. What if the Wegener's is there lying dormant in the genes making some areas vulnerable to infection and disease? Over the years you have higher than normal problems in these areas. Then when the actual trigger for Wegener's (whatever that may be) hits the vulnerable areas the Wegener's can gain a proper foothold.

As for the stress, I don't know if it's an actual trigger but it's certainly not going to help. I know from experience that my wife, Alicia's, Wegener's has hit her much harder and her recovery has been slower when she's stressed.

[mishb]

But then, we have heard of a two year old and a three year old with WG.
What stress would this little kiddie have - it doesn't make sense :sad:

[Dirty Don]

Stress is associated with mental and emotional, but it's physical/chemical, so a little kid would suffer from stresses of sorts too.

[marys4373]

I totally agree with you that Drs. are inclined to consider common diagnosis with the symptoms they see. Every time I see a new doctor they say that I am very complex. I reply that it is going to take someone to sit down and pull it together (look outside the box) to come up with the diagnosis. Since my journey started with granulomas in my lungs I have seen a total of 24 plus different doctors. I have to say I am coming closer to a diagnosis. So far I know what is not wrong with me (that is a good thing).

[Dirty Don]

I totally agree with you that Drs. are inclined to consider common diagnosis with the symptoms they see. Every time I see a new doctor they say that I am very complex. I reply that it is going to take someone to sit down and pull it together (look outside the box) to come up with the diagnosis. Since my journey started with granulomas in my lungs I have seen a total of 24 plus different doctors. I have to say I am coming closer to a diagnosis. So far I know what is not wrong with me (that is a good thing).

Do you have access to Mayo in Rochester?

[marys4373]

Do you have access to Mayo in Rochester?
Yes, this is where I doctor all the time as I live there. I am very fortunate. I do understand Mayo is a teaching clinic but sometimes it drives you crazy. :rolleyes1:

[Mikek]

We had a very stressful situation in the family that went on for weeks. Then Jenny got Wegs! Coincidence????? Who knows.