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Thread: Survivor from Missouri

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    Default Survivor from Missouri

    Hi,
    Dave here. I was born in 1956, diagnosed in 1994, and still alive today on 10/28/2013. I was told wegeners is an orphan disease, meaning so few people are diagnosed that there are no treatments or active research studies. After losing my career, my marriage, my health care insurance and most of my sanity I managed to survive until my SS application was approved. Then I went back to the medical profession and was told my wegeners was in remission, evidently since I had lived beyond the expected survival period. I followed the best advice I could find on the internet at the time of the diagnosis: get plenty of rest and don't over do it when you are having "good days".

    Other than that, all I did was move out of the city (and away from a job located close to pollution spewing industry). To this day, I do not know for sure if I actually had wegeners or that my immune system was only reacting to high pollution. There must be some way to know for sure?

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    I'm glad you are surviving Dave. You have come to the best place for Wegs info and support and friendship. I know there are a few Wegs experts in KC. I take it you are med free and have not seen a doc in many years? Do you remember what meds you were on and what organs were affected? What were your onset symptoms?
    Phil Berggren, dx 2003

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    Welcome, Dave. I'm glad you found us. I know there are others on here who were dx'ed even longer ago than that, went into remission, and then some have flared again... so it is lifelong for many or most in that sense, but it doesn't necessarily shorten our life expectancy if it is managed well. I guess I've had Wegs for about 5 years but only have been dx'ed for 2.5 of them. That's pretty common. Can't answer your question as to how to tell if you actually had Wegs. But I'm glad you are doing well and showing no signs at present. It sounds like you were pretty lucky given the attitudes and lack of expertise of your docs at the time you were sick. If you do flare, docs today should be better prepared to treat you. I hope some of those old-timer Weggies will see this and if they do, I'm sure they'll respond.
    Anne, dx'ed April 2011

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    Default Reply to an inquiry:

    Quote Originally Posted by pberggren1 View Post
    I'm glad you are surviving Dave. You have come to the best place for Wegs info and support and friendship. I know there are a few Wegs experts in KC. I take it you are med free and have not seen a doc in many years? Do you remember what meds you were on and what organs were affected? What were your onset symptoms?
    I live on the other side of the state from KC, St. Louis area.

    Was taking allergy shots for dust and cat dander at the time of the diagnosis (1994). Symptoms leading to the diagnosis were extreme fatigue, chronic sinusitis, sleep disturbances (which later were attributed to sleep apnea) and the loss of septum in the nose. When the allergy doctor noticed the septum was gone he ordered a catscan to rule out tumors and I was referred to a sinus specialist (Ear, Nose and Throat) who diagnosed the WG.

    I was told then about WG being an orphan disease, that there was no known cause or treatment. He attempted a septum repair with a small piece of skin from behind one ear, but it didn't work because the area needed for stitches to take hold crumbled away. I think this was called necrosis, the ongoing deterioration of flesh surrounding a wound? Then implanting a button in the hole was tried which also failed. There really was no follow up after that ... and attention was given to treatment of depression (which is recurring, and at this time I was having my 3rd serious bout with it.)

    After taking 3 years to get Social Security Disability and have medicare started is when my new doctor (Palliative Care) declared I was in remission. Next was ten years of treatment for depression to no avail, no anti-depressant seemed to help, and I tried many options.

    Other problems during those ten years were one case of kidney stones (after which I was told one kidney had failed). Then some years later had gall bladder removed and was told both kidneys were fine. Also was finally diagnosed with the sleep apnea and put on CPAP which did help somewhat with the extreme fatigue, but did not provide full recovery and return to a normal life. Recounting this from my poor memory, really not sure which came first or what order, but quite sure I was told a kidney had failed and then later that both were fine.

    Gave up for the next 5 years, no doctor visits, no anti-depressants, no CPAP ... just day to day bare-knuckle survival. As a side note, the symptoms of severe depression diminished during those 5 years off the meds. Could the anti-depressants have actually been worsening the depression? Symptoms seemed to worsen especially with the Prozac, which was the first anti-depressant taken during those ten years. Another med taken was Zoloft which I cannot even recall, but the doctor insisted I had been on for about a year. Wow, just wow.

    Finally, in 2012 I decided to take an early distribution of a pension and returned to the same palliative doctor. Pretty much thought I was done for and time to hit the nursing home. But he diagnosed Diabetes, I started the pill form of meds and began a Diabetes diet. Lost 40 pounds in about 4 months and am beginning to feel much better on the physical front. Weight loss after those initial 40 pounds are not coming easy.
    Despite feeling better, I still believe at 57 that I have the physical strength of someone 10-15 years or more older.

    Feel like I'm rambling, so I'll stop for now.

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    Your symptoms and the progression of things have some real similarities to mine, and others'. I also was on allergy shots at the time of my dx, for all kinds of pollens and molds as well as cat dander and dust mites. I also had recurring sinus infections and ear problems, including infections and loss of hearing. I also have a hole in my septum, which caused the cartilage to collapse, so I have a saddle nose. That loss of your septum combined with the other sinus stuff leads me to guess that you did, or do, have Wegener's. I was also on Zoloft for depression, but not any others. I should probably go back on it, as I found it helpful without being heavy in any way. I'm sorry about your bouts with depression, which sound a little worse than mine, and for the negative effects your illness has had on your life. Also that you now have been dx'ed with diabetes. There are others on here who have been through some of those things and will no doubt respond once they see this. There are some on here who almost died and came through. It doesn't sound like you have ever gotten proper treatment for Wegs, assuming you have it, and I hope you can get in touch with a doc experienced in it who can go over your case and provide an assessment of what you might need now or in the future. And don't worry about rambling, we all do it, it is hard not to when reciting the progression of our Wegs. You will find this to be a patient and caring group who will offer support, friendship, and information. It is OK to get on here and vent if you ever need to. We are here to listen.
    Anne, dx'ed April 2011

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    Hi and welcome.
    you have been through rough times. I am sorry for you.
    do you have a saddle nose ? I am asking because as far as I know, it is a kind of a "stamp" of wg. so many weggies have it.
    considering your depression, maybe it was not "major depression" ? maybe this is why the meds didn't help you ? maybe it was a derivative of your medical state ?
    there are some symptoms that are common to depression and wg: loss of energy, sad feelings, being tired, feeling empty of powers etc. besides, being sick can make anyone depressed. I know it. I have days and moments of being depressed.
    taking away this depression with meds is against the "expression" of the soul's pain. your soul must be strong, not willing that the meds will take away legitimate feelings, arising from sad state.
    I hope that the rough times gone. since you are here, you are not alone anymore with the questions and feelings
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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