After a three year journey, I've come home for good.

[crowneagle]

I first joined and posted on this site in Jan 2013. At the time, I suspected I had Wegener's but I could never quite pin it down. Well, after a lot of damage and a recent brain biopsy, they have officially diagnosed me with GPA. Over the past five years, I've had Uveitis, kidney infarct, spleen infarct and numerous Tia's and brain hemorrhage's along with other manifestations. Things turned for the worse this past summer while my elderly father was dying of congestive heart failure. I was his health care proxy as well as his executor. The stress of the moment made my disease go into over drive. After taking a pnuemonia vaccine in July, I ended up in the hospital with a nasty stroke. Steroids were the treatment. That did not last long, as just two weeks ago, I ended up in the hospital again with sudden blindness in my left eye. I just got done a five day IV steroid regimen. Cytoxan is next on the agenda. My CNS involvement has been the most difficult to deal with. Foggy brain and messed up blood work has left me in disarray but alive. My case was difficult because I never tested positive for MPO or PR3 antibodies. I now have a lot to learn and absorb. I used to be an extremely healthy individual with text book vitals. Now, I feel every system in my body is chronically ill. My heart was the only organ not seriously affected. My personal name for my disease is "Death by a thousand Cuts". Anyways, I'm here again and you are all my extended family now. My primary focus will be to deter any further damage and to live as high a quality of life as possible.

[mishb]

Hi crowneagle, I really hate saying welcome back, that sucks :crying:

I am glad that you now have a name for what is making you feel so crap, but I'm sorry it wasn't something as easy as a cold or flu, causing all of the trouble.

Well, welcome to this big extended family that you have just gained - again. :hug1:

Any questions, that you didn't ask before, feel free to ask away.
I guess you can also yell and shout in here, at us or with us, and we will be a sounding ear for you.

Take it easy, reduce the stress and hopefully that crazy wegs dog will go to sleep

[Middlesista]

Crowneagle - you have had some tough times both physically and emotionally - sorry about your Dad and know that your positive attitude going forward is a good thing.

I think GPA has been lurking in me for at least 2 years if not longer but other than hearing loss that wa attributed to "idiopathic viral" issue I was just going along not paying attention to fatigue and I had a work up due to elevated inflammatory markers years ago but nothing ever came of it

Anyway - in October I suddenly had vision issues cultimatng in loss of vision in my left eye and that is when GPA first reared its ugly head as my diagnosis. Is your vision back? My vision came and went for two cycles of prednisone and it was not until my secon d admission that the my vision came back after high dose IV steroids. Also having Rituxin infusions and am so hopeful that this will knock this thing out of me so I can live some semblance of my life and I am sending healing thoughts your way also so you can attain your goals

[MaxD]

We're with you, crowneagle. Take it one step at a time, with a lot of patience and as little stress as possible, and faith in your docs. You gave your dad all you could, now it's time to be kind to yourself. Best wishes!

[Birdie]

My personal name for my disease is "Death by a thousand Cuts".

The Nazi doctor is nobodys friend.

Things start looking better once you know it's him, and learn as much as possible. Read read read... ask every question you can think of, we all learn from that.

[annekat]

Welcome back, Crowneagle, although we'd rather you had no reason to be here. It sounds like your doctors are able to handle the quirky ways in which WG is playing with you. The stresses you have been through with your dad's passing and everything around that has given the Wegs dog an opening back in. Things will get better, they usually do, and like middlesista says, there is hope of vision returning in your eye, if it hasn't already. Let's hope you can have some easier times, and opportunities to find pleasure and relaxation in life, so that this beast can turn it's tail and run in the other direction. Keep us posted through the holidays and beyond.

[crowneagle]

Crowneagle - you have had some tough times both physically and emotionally - sorry about your Dad and know that your positive attitude going forward is a good thing.

I think GPA has been lurking in me for at least 2 years if not longer but other than hearing loss that wa attributed to "idiopathic viral" issue I was just going along not paying attention to fatigue and I had a work up due to elevated inflammatory markers years ago but nothing ever came of it

Anyway - in October I suddenly had vision issues cultimatng in loss of vision in my left eye and that is when GPA first reared its ugly head as my diagnosis. Is your vision back? My vision came and went for two cycles of prednisone and it was not until my secon d admission that the my vision came back after high dose IV steroids. Also having Rituxin infusions and am so hopeful that this will knock this thing out of me so I can live some semblance of my life and I am sending healing thoughts your way also so you can attain your goals

Most of my vision came back even though it's still darker and foggier. At the moment, I'm having terrible constipation. I get it every time I get an attack. Hoping to clean myself out today. I think that would make me feel better. After signing all the disclosures pertaining to the cytoxan regimen, I'm going to make my first appointment today or tomorrow. They said I cannot wait until after the holiday's. Have a awful taste in my mouth. Might be from the steroids.

[crowneagle]

Thank You very much. I'm trying to keep up my spirits.

Welcome back, Crowneagle, although we'd rather you had no reason to be here. It sounds like your doctors are able to handle the quirky ways in which WG is playing with you. The stresses you have been through with your dad's passing and everything around that has given the Wegs dog an opening back in. Things will get better, they usually do, and like middlesista says, there is hope of vision returning in your eye, if it hasn't already. Let's hope you can have some easier times, and opportunities to find pleasure and relaxation in life, so that this beast can turn it's tail and run in the other direction. Keep us posted through the holidays and beyond.

[debra]

Crowneagle, hello. I remembered u because you're from Mass. I am as well. I'm sorry about you're dad and all you're going through... Im sure u know already about how great everyone is here... Support is so important... Knowing you're not alone helps so much...... Best to u,crowneagle..... Deb.

[Middlesista]

prednisone does leave nasty aftertaste I agree. Glad you are starting treatment soon. Did they find optic nerve inflammation or what did they think was causing the vision loss? I have been reading about the various issues that can actually do this to our vision - so many ways that GPA can affect us. Glad you got most of your vision back and be sure to let doc know immediately if things go the wrong way. Did u see a neuro - optomologist?

I also had the foggy vision at a few points - felt like I was looking out of a window smeared with Vaseline and then everything went sort of white

Take care, always sending healing thoughts your way....

[Middlesista]

Constipation - do u take a stool softner or Miralax- keep those bowels moving !!!

The sooner u start the treatment the better for getting that vision improved

[debra]

Sister in the middle, hi! I keep hearing about the weird taste in the mouth issue,and I'm sure meds cause this as well,but interestingly I had this bad and no meds. It was so horrible for the first year and a half or so,that I was sucking blow pops all day. Anything with a stick,was in my mouth. Why lollipops, who knows. Maybe I was afraid I'd choke,cause so many bizzar things were happening! Still get the mouth thing on occasion,but not like before... My eyes are a constant struggle. Always changing. My goal, Dr. Steven foster!!!!!!! Crowneagle,he's near u,in Waltham I believe... Deb.

[crowneagle]

Crowneagle, hello. I remembered u because you're from Mass. I am as well. I'm sorry about you're dad and all you're going through... Im sure u know already about how great everyone is here... Support is so important... Knowing you're not alone helps so much...... Best to u,crowneagle..... Deb.


Hello Deb, Where abouts are you in Mass. I'm on the shores of Webster Lake or by the indian name
Lake Chargoggagoggmanchauggagoggchaubunagungamaugg
roughly translated to mean "You fish on your side, I'll fish on my side and nobody fishes in the middle". It's my pleasure to meet you.

[crowneagle]

Thank you for your thoughts. I've been focusing on this today; but not that closely LOL!. Been using Miralax, epson salts, olive oil, laculose and plenty of clear fluids. I do not want to start chemo until I've flushed myself out. Don't want anything in me for the chemo to bind to. Has anybody else had this problem. I get it every time when I've had a nasty attack.

[crowneagle]

Nothing seems to work except warm
salt water was helpful.

[crowneagle]

Nothing seems to work except warm
salt water was helpful.

[crowneagle]

I've seen Dr Foster. I'm now under the care of one of his former fellows__Dr Anessi. Great guy. He was way ahead of many of the other doctors. I see Dr Anessi in Worcester. I grew up with some of his assistants; so he takes extra time with me. Eye problems were the first manifestation of my disease.

[debra]

C.E., nice to meet u as well... I'm from westroxbury Mass. Origanaly, on border of Rosie and border of Dedham, currently in the ever so lovely Nashua,NH... It's a very small world huh? I still look and wonder about Gary from Boston,and hope he just stopped posting cause he got cured! Always looking for local people, to see who they see for doctors ect... Anyway, I hope the best for u! Hope to see u around, but of course sorry u have to be here...... Deb.

[debra]

C.E., wow you've seen Dr foster too... I've talked to his nurse but that's it so far. Good for u! My eyes also were the first to be effected... It's great to know you're in great hands.. take care of you're self...... Deb.

[crowneagle]

Let me see, I'll list all my doctors. I have a occular immunologist, two neuro immunologists, neurosurgeon, hematologist, rhuematologist and a pulmonologist and of course my GP. I lost my sight in my left eye because I had a hemorrhage in the back of my brain. The sight has come back for the most part. My main doctors right now are the neuro-immunologists. They are pulling all the strings. My lungs never got that bad even though I had granulatomas that were biopsied but the biopsy was inconclusive. My brain biopsy was a trip and I was very happy with the neurosurgeon. He was out of Loyola in Chicago. He sliced my forehead from temple to temple and peeled back my forehead and biopsied a lesion in my right frontal lobe. I was up and walking laps around the medical unit that night. I live in Massachusetts and we have some of the best minds in medicine and it still took five years for a definitive diagnosis. My Wegners is atypical which is why it took so long to pin down. The doctors all get locked into their way of doing things and sometimes have a difficult time thinking outside the box. In the end, they acted fast because the disease was progressing rapidly. The biopsy of the brain confirmed everything. In hindsight, the only doctor that never wavered was my occular immunologist Dr Anessi. He told me three years ago he was going to try to save my life. He fellowed under Dr Foster in Boston at Mersi. Here is a MYSTERY DIAGNOSIS episode on You Tube https://www.youtube.com/watch?v=b62YET6QVUY

[Jaha]

crowneagle,
I am so sorry for the loss of your Dad. It sure has been a very stressful period for you while being stricken with this ugly disease. I'm wishing you all the best with your treatments and doctors, to get you feeling better. Take care of yourself and please keep us informed with your progress.

[debra]

C man, hi... Wow,I'm sorry u had all this to deal with... May I ask what symptoms u had, when they decided on opening you're head? Also in those five years, I'm assuming u were being treated, with atleast pred? Sorry, I will go back and re read... Youre doctor list is to be expected right? Be glad you're in Boston, or rather right near..... The video u included, I had seen and what always seems to be the case in these, is the fact the patient is the one to put the peaces together! C man, again I'm sorry u had to deal with all this, but hopeful things will improve for u... You have great doctors, so that's a lot..... I wish u the best..... Deb.

[crowneagle]

C man, hi... Wow,I'm sorry u had all this to deal with... May I ask what symptoms u had, when they decided on opening you're head? Also in those five years, I'm assuming u were being treated, with atleast pred? Sorry, I will go back and re read... Youre doctor list is to be expected right? Be glad you're in Boston, or rather right near..... The video u included, I had seen and what always seems to be the case in these, is the fact the patient is the one to put the peaces together! C man, again I'm sorry u had to deal with all this, but hopeful things will improve for u... You have great doctors, so that's a lot..... I wish u the best..... Deb.

Isn't that the truth? I'm the worlds foremost authority on my own personal brand of Weggners. The difficult part is explaining it to lay people. Every single case is different. I believe that's why doctors have such a difficult time with it. Biopsy is the gold medal standard and even that didn't do for me until they found the right lesion in my brain. The hospital I was in is a teaching hospital. I actually held kind of a class in my hospital room for the medical students. They were taken aback by my knowledge.

[debra]

Crowneagle, I see you're sleep schedule is off as well...... I'm guessingyoure antibodies were negative as well? Need to go back and read again, its late, or early... I remember Gary from Boston did this with his doctors as well. If I recall correctly he was doing a power point presentation... My long term memory is Realy good, short term not so great.... But yes it seems the patient should maybe put on the lab coat at times..... Well, good night,or morning...... Deb

[Middlesista]

Sounds like you have been doing all the right things for constipation. I know folks get bound up with some of pain medication that is required by some folks but not sure if constipation is association with GPA flair.

[drz]

Isn't that the truth? I'm the worlds foremost authority on my own personal brand of Weggners. The difficult part is explaining it to lay people. Every single case is different. I believe that's why doctors have such a difficult time with it. Biopsy is the gold medal standard and even that didn't do for me until they found the right lesion in my brain. The hospital I was in is a teaching hospital. I actually held kind of a class in my hospital room for the medical students. They were taken aback by my knowledge.

I remember being exhibit A for a dozen or two medical students and interns most days when I was able to tell them about Wegs and its symptoms. I hope some where some day some poor soul with Wegs gets an early diagnosis and is saved a lot grief from our efforts.

[crowneagle]

i hear you with the memory. Short versus long term memory

[crowneagle]

I avoid the pain pills as much as possible. Plus, I save them up for emergencies.

[debra]

C man, I do the same,with anything for pain,I'm scared of becoming immune to any pain meds! Man, this would suck.... Drz, I hear ya... Maybe someday,they will have a nation wide wegeners teaching seminar,that's mandatory for all doctors to attend. Damn, I wish they would at the very least remove the rare label!!!!!! I don't think it is... Just undiagnosed... But this rare label is,in my opinion what stalls things. My doctors,who never heard of it, as soon as they saw rare, they backed off the computer! And said no,u can't cause its rare.... Ya rare my ass. I'm not at all buying it..... Hey a wegeners awareness day,would be pretty cool....... Deb.

[crowneagle]

This might sound foolish but the c-anca test for me is useless and not an economical use of medical resources. I've never tested positive for the MPO or PR3 antibodies. I test positive for C-Anca but that is pretty useless. None the less, they keep the medical system churning income by continuing to use this test.

[debra]

C man, was going to call u,crownroyal again by accident! Why, can't a doctor just listen? Listen to the patient, and look at what u see!!! I understand the treatment can be dangerous, but what about not treating???? Put all symptoms together, rather than separate, especially when they all happened at once.... When I see zebra stripes I think its a zebra! Not a cow! You know, a blind man,blind all his life, sees more clear than a person who's had their sight all their life.... Deb.

[Birdie]

Maybe someday,they will have a nation wide wegeners teaching seminar,that's mandatory for all doctors to attend.

After several ER doctors had never heard of Weg, I was surprised when I got one who knew something about it. He told me it was on the exam for all doctors in Arizona. And yet, those who failed to impress on other points also claimed to have never heard of it.

[Birdie]

This might sound foolish but the c-anca test for me is useless and not an economical use of medical resources. I've never tested positive for the MPO or PR3 antibodies. I test positive for C-Anca but that is pretty useless. None the less, they keep the medical system churning income by continuing to use this test.

c-ANCA is my indicator and I can't get the VA to test for it.

[debra]

A nation wide mandatory teaching, add a financial penalty, and you'll see a response... And a Wg awareness day, or better yet month. Get the zombies that work in the media, to help... Wishful thinking, but maybe Some day? Birdie u can't get you're antibodies tested cause you're like me, u don't have the right insurance, that gold standard of medical care, just doesn't apply to us.... As far as anca,ect. This wouldn't be as much of an issue in terms of ireating,and believing versus not, if they were just more educated....f Ok!!!!! Why on earth can I not correct this?????? And what's up with the f????? So. frustrating!!!!!!!!!!!!!!!!!! Deb.

[debra]

That f up above Realy bothers me.. I actually put a lot of thought to assign a word to go with the letter, I can't seem to erase, but decided against it...... Smart phone, ya, ok!

[crowneagle]

I've been told it's an expensive test. I've had that test about ten times. I would have gladly given someone one of those tests if they'd let me.

[Birdie]

That f up above Realy bothers me..

Get a new phone. :)

[debra]

Ya Birdie.... Replacement sitting here, almost ready to take the plunge into the unknown.... Im a tech wimp.... Thank God I'm good with people!!!!!!!!! Ha ha..... Birdie I can hear you laughing from Arizona...... Deb.

[Birdie]

Ya Birdie.... Replacement sitting here, almost ready to take the plunge into the unknown.... Im a tech wimp.... Thank God I'm good with people!!!!!!!!! Ha ha..... Birdie I can hear you laughing from Arizona...... Deb.

Sorry crowneagle, was not paying attention, hijacked your thread when I thought it was Deb's noncents thread.

[debra]

Mr. C, I too am sorry, although I'm going to blame him.... The one above me...... Deb.