READING THIS POST COULD CAUSE EXTREME DROWSINESS.
Cutting to the BASICS – I wonder if anyone has experience with Wegener’s Granulomatosis and also suggestions for tasty alternatives to wheat bread? And there really IS a library connection. I promise.
OK. It has been a long time since my last post. Retirement has been busy – and mostly fun – but too much of the “busyness” has revolved around doctor appointments. It would seem that we are finally closing in on a diagnosis of Wegener’s Granulomatosis. Say that three times fast…I dare you! Yuk. Nasty, rare, immune disease. Leave it to me to be different.
In addition to my GP, I have been to 2 pulmonologists, 1 ENT, 1 Allergist, and 1 Rheumatologist, and it has taken 18 months so far to get a diagnosis that makes some sense. Maybe I should ask my hairdresser. He is a smart guy and has about the same chance of a correct diagnosis as some of my specialists.
I have had a constant cough, have felt mildly ill and have had hoarseness, loss of smell and sinus infections, and periods where I was short of breath. Asthma/COPD meds gave only very limited relief. I was in the hospital for a week in August. Lots of antibiotics and prednisone, x-rays and CT scans throughout the past 18 months. All the health professionals I have seen are convinced that the asthma/copd drugs they give me are going to give me instant relief and I am going to shout “Hallelujah!” Then they watch me take the medicine and are surprised when, indeed, there is very little improvement. Well, duh! That’s what I have been telling you! But I guess they just have to see for themselves.
The allergist said testing showed only mild allergies to grass and trees. But she became concerned about an elevated ANCA level in my blood work and sent me to the rheumy who has diagnosed “mild wegener’s”.
From all I read, I am very skeptical of the diagnosis, because, with the exception of the hospital visit, I don’t seem anywhere near sick enough to have Wegeners. Right now I have no symptoms other than a constant cough and a wheeze on expiration that won’t go away. Still…I have plenty of energy, and have felt good most of the time since December. From my research, I did discover the difference between limited and systemic Wegener’s. But both seemed pretty serious to me – and way beyond the degree of sick I am right now.
After all, I can walk three miles. Granted, the first mile I sound like Darth Vader, but I am getting plenty of oxygen. After a mile, I can finally clear my throat and do the last two miles comfortably.
I don’t want to take the Imuran the rheumy has prescribed. It seems a bit like swatting a fly with a baseball bat. On the other hand, the doctor tells me if I don’t take it, I might develop full-blown WG. The treatment for that is prednisone and a chemo drug called Cytoxan….which would be more like swatting a fly with an atom bomb!
Right now my plan is to insist on a biopsy, since that is the only way to know for sure.
My PCP, who is a wonderful doctor, feels that I should not take an imunosuppresant at this point. She is an integrated medicine doctor and likes to look for natural cures. She has prescribed me plenty of “traditional” meds – but wants me to try cutting out GM wheat, corn and soy from my diet before trying Imuran. I know the research connecting those foods with immune problems – but if it has lead to WG, it has taken about 63 years to do so. Dropping them now does not seem like a quick fix to me. I switched to about 80% organic two years ago, and now plan to purchase a heavy-duty mixer so I can make my own bread with organic flour. I think we would be healthier as a population if we eliminated GM products from our diet. However, as a cure of this ongoing illness I have? Not so much….
I have to wonder why it takes so long to get a diagnosis. When my sinus problems began to linger on for more than 2 month, I started doing research and Wegeners kept coming up as a possibility. I should have said something to my doctors – but reading the symptoms, especially from those who have the disease, I just decided I was not sick enough to have it. Oh well. Hindsight is 20/20 as they say….
I just do not feel entirely comfortable about this diagnosis. I guess no one can satisfy me. I have been complaining about how long it has taken to make a diagnosis, and then when a new doctor makes a diagnosis after two visits and a few lab tests during a period of time when I feel almost normal…I complain that the diagnosis is too fast!
TAKE-AWAYS FROM ALL THIS?
- I need to know if cutting out wheat, corn and soy are worth the agony.
- Will organic wheat be less inflamatory? I REALLY do not want to give up bread. I keep getting inconclusive answers – and I sure would love to kill all those “research articles” AKA ads for wheatgrass juice!!
- It all makes me hope that I have taught my students well – to research deeply and think with an OPEN MIND. None of us fits into a formula.
