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pberggren1
03-26-2009, 02:38 PM
I first started to get sick around the middle of February 2003. I was taking a 2 year diploma program in Water Resources Engineering Technology at a local technical school at the time. I was in the second semester. The first symptoms I had were like that of a cold, sore throat, plugged sinuses, run down feeling, etc. I didn’t pay much attention to it and just upped my intake of garlic, ginseng, echinacia, vitamin C and D, etc. By the end of the month I felt almost 100% better. But then a few days later all the symptoms came right back. By the middle of March my joints and muscles were aching all the time, my sinuses were almost completely plugged, I was extremely tired all the time, and started to have quite a headache all the time. I saw 2 local GP’s in the span of a week and both said in was a bad case of sinusitis and gave me prednisone, some antibiotics, and nasal sprays. By the end of the month I was much worse and was going to a local health food store for my supplements and advice. I got a book there called Healthy Immunity by Lorna R. Vanderhaeghe. After reading this book and talking with many other people I came to the conclusion that maybe I had some autoimmune disease.

I wrote my last final exam of the semester on April 2 but still had to participate in a survey camp that ran to the end of the month. My sinuses were so plugged by this time that I couldn’t breathe through them and would lay in bed and pour salt water down my nostrils to try and loosen it up a bit. It was like concrete in my sinuses. I was also using a tiny metal spoon to dig around in my nostrils to get stuff out. On April 4 when I was doing this in the morning it felt as if things were loosening up. I continued to work at them for quite a while. Then I tried blowing my nose very gently. I then had a very severe pain in my right ear as if a nail was driven into my eardrum. My hearing prior to this had gone down just a little over a couple of weeks. After blowing my nose my hearing in my right ear went down quite a bit. I went to the ER and the doctor there said the same thing as the other 2. I told her that she was wrong and that I needed to see a team of specialists to find out what autoimmune disease I had. She just gave me the same stuff as before with the other 2 doctors and some ear drops. I told the school I was no longer able to continue on and the next day I took a bus home to my parents house as I was unable to drive.

I got home and saw my mom’s GP and told him everything and he said the same thing. My parents were quite worried. 2 days later the pain got so bad that I told my dad to admit me to the hospital so I could get demmorahl or morphine. The next day I saw an ENT who was visiting and he did a CT scan of my head and said he has never seen sinuses that plugged and hard before. He also said that it is just a bad case of sinusitis. He said that tubes in my ear drums would allow the fluid in the inner ear to drain out and bring back my hearing. I stayed another 7 days and then was released early one morning as to me and my parents surprise. The ENT wanted to see me in Saskatoon, 3 hours away. We thought it was to have the tubes put in but he just wanted to see me in his office. The highways that day were covered in thick, chunky ice and by this time I could barely walk. I never saw my parents so mad before. The tubes were scheduled to be put in on April 29. My mom was talking to her sister who is a nurse about the whole situation. I was also coughing up bloody mucus starting while I was in the hospital. By April 23 I was so bad my dad decided to take me to the ER in Saskatoon. I was diagnosed in 20 minutes by a doctor who is now my Nephrologist. They first wanted to do a biopsy on my lungs and then on my kidneys, but they decided it was too dangerous and went for the sinuses instead. They had to clean out the sinuses anyway. It proved positive and the next day I started on 125mg of Cyclophosphamide, 60mg of Pred, and Cotrimox. I was released 3 weeks later. I went from a very healthy 155 pounds to a very sickly 95 pounds in less than 2 months.

The ENT I first saw is still my ENT. I have had 3 relapses but have definitely learned a lot about this disease. I am very fortunate to have good doctors that listen to me.

I could have gone into much more detail making this several pages long but most of you have heard much the same story before.

Jack
03-26-2009, 06:15 PM
Sorry to hear that you had such a bad time, but your story is by no means unusual as I'm sure you know.
My own symptoms were very similar to your own, but the saga continued for over a year with numerous sinus wash-outs and finally a "bi-lateral Caldwell Luk" operation to remove my sinus linings. Ouch!!
It was only when I went into renal failure that a visiting consultant suggested Wegener's.

Sangye
03-27-2009, 12:35 AM
I feel compassion for those of you with sinus symptoms. Just having a simple sinus headache is bad and makes it hard to concentrate, relax or want to do anything. I don't know how you do it.

andrew
03-27-2009, 06:59 AM
Hey there and welcome! I got sick around the sam time you did. Sinus is where mine started too. They got so stuffed up my eyes were not opening properly. They weren't nearly as bad as you so I can only imagine that kind of pain. Ouch! Pity that you had to go through so many different docs to get a diagnosis but I'm glad you did!!

How are you doing now?

coffeelover
03-28-2009, 04:02 AM
I too started with sinus problems and still have problems. mine are nothing compared to what you went through. But annoying and difficult breathing non the less.
My sinus problem eventually continue by adding problems with my trachea and now I wear a trach.
(and still suffer from sinus clogging)
My rheumy diagnosed me right away so I was also lucky and I started MXT in Jan. ( I was the delay in getting treatment as I was thinking allergies...silly me!)
Since starting MXT in Jan. I recently had blood work done and got the results back yesterday. I am not able to tell you all the numbers (because I am at work and did not bring it with me), but it does appear the MXT is starting to work as the ???? number was 19 and is now 16. ( it appears this number, to be norma,should be below 9 or better yet 6)
I see my rhuemy in 2 weeks and my ENT in a month so maybe more answers then.
Advice welcome!
Lisa

Luce
03-28-2009, 04:42 AM
Hi

Sounds like you're referring to your ANCA or PR3 number. I have been told that for non-weggies a normal result is 0 or 1, for me to be classed as in remission it needs to be under 5.

I thought I was getting close as it dropped to 23 but it has since shot up to 176, so I'm back on the cyclophosphamide and increased pred for a month at least to try and regain control.

andrew
03-28-2009, 05:24 AM
Hi

Sounds like you're referring to your ANCA or PR3 number. I have been told that for non-weggies a normal result is 0 or 1, for me to be classed as in remission it needs to be under 5.

I thought I was getting close as it dropped to 23 but it has since shot up to 176, so I'm back on the cyclophosphamide and increased pred for a month at least to try and regain control.

Ya know, Luce, this is the first time I've actually noticed what the normal ANCA reading should be. :eek: That's weird. Mine's currently at 25 so I have a little way to go yet. How bizarre. It's one main telling factor of WG and I had absolutely no clue what normal was. I'm gonna have a think and a good lie-down. :D

Luce
03-28-2009, 05:36 AM
Wow, I'm really surprised no one has told you about that. I've been using it as my main goal, although I'm not sure how healthy it is to get caught up in numbers. It is a good way to show people my progress though - the number was 329 when I was admitted into hospital.
As I understand it PR3 is the protein that is produced when WG causes the body to make these autoantibodies which form granulomas and start eating away at our sinuses, kidneys and lungs. If you don't have WG then your body doesn't produce any PR3 so you should get a negative result.
I also believe the number refers to the amount of washes it takes to rid your blood of the PR3 proteins. So at first it took 329 washes (or filtrations perhaps) before my blood was clear of the PR3.

This is something I quite often have to explain when I go to the pathology lab for a blood test. My doctor tends to write the test as PR3 titre and they don't know what this test is - I have to explain it's part of ANCA and then they get it.

andrew
03-28-2009, 05:56 AM
Thanks Luce, I didn't know that either!! I'm stunned how much I don't know about this critical test. I thought that number was the level of 'x' in the blood and figured it'd come down evenutally LOL. I can't remember what my original measurement was when I was diagnosed. I was probably told but I was concentrating on breathing at the time :D

Jack
03-28-2009, 06:49 AM
I gave up watching my test results long ago and prefer to just go by how I feel. I sometimes ask about my kidney function (transplant) because I see it as my lifeline and I also know that my Potassium levels are always too high. When I used to watch them, my ANCA level never followed what was happening to my body.

Luce
03-28-2009, 06:59 AM
I know that ANCA isn't reliable for everyone but it does seem to be useful for my doctors. Although they can't explain why mine has shot up as that's usually a reaction to an infection. I personally think it's because they reduced my dose of azathioprine too much and it wasn't controlling the disease activity anymore.

coffeelover
03-29-2009, 01:51 AM
This is GOOD to know. Thanks for all your posts. I, like Andrew thought it was just a number that would eventually just go down with meds? Not realizing that it could be totally unrelated to how I may feel or that is could be affected by an infection.
I got three pages of tests back, but do not understand any of it, so when I go to see my rheumy, I will ask her to explain.
I too want to use this as a progression tool when explaining to family and friends. (Oh, how I am sick of explaining!)

Speaking of explaining...just a quick gripe to get this off my chest but the comment I hear from family and friends the most is "well, you have such a good attitude about your illness". This bugs me (rabbit phrase) because they say it like I have a choice.
Ok that is off my chest....feeling better.

By the way....I run a hotel and yesterday I decorated with bunnies.:D
lisa Coffeelover

jola57
03-29-2009, 02:09 AM
Lisa, good thing its Easter :)
ANCA is an unspecific test by itself and only when paired with others a good indication where one is at. 0 or negative is "normal", too bad this is not a blood test they do automatically with WBC at regular check ups for normal people maybe if cought early we could find out we are sick befor it gets too far.
Mine fluctuates, above 250 it just states greater than 250. At the moment it went up fro 24 to 56, but I was fighting a flu, which came and went gently due to flu shot. I am still waiting for my last results, it seems to get to me later and later.

Luce are you on both cylo and aza? Any side effects from aza. My rheumy will be putting me on aza in June (to take on the last month of and along with chemo). For how long I don't know I guess its better than chemo.

Luce
03-29-2009, 03:07 AM
I was on aza until last week when I got moved back on to cyclo. I loved aza so much, no side effects at all for me! The problem I think came when I first switched from 150mg cyclo to 150mg aza because I then became really anaemic. So they reduced my dose of aza to 100mg which I now think was dropped too low, my ANCA shot up and increasing me to 125mg aza wasn't enough to get it back under control.
So now I'm back where I started on 150mg cyclo for at least a month - hopefully I can move back to aza as I have a lot more energy when I'm on that.

jola57
03-29-2009, 03:53 PM
Thanks for the info. I'm still on 150 cyclo and 35 pred, aziatropine will be given in June if all goes well. Anemia is dangerous especially for us, so the lowering would make sense. There is just no way to win with this disease, if it's not one it's the other. :(

Jack
03-29-2009, 04:31 PM
There is just no way to win with this disease, if it's not one it's the other. :(
Have to agree with you there! Just as soon as you get one problem sorted, along comes another. Some symptoms last for years, others only days or months, but they are forever changing.

andrew
03-29-2009, 07:58 PM
There is just no way to win with this disease, if it's not one it's the other. :(

It's like playing 'whack-a-mole' (Whack-A-Mole, Online Fun, Dorney Park (http://www.dorneypark.com/public/online_fun/mole.cfm))

Luce
03-29-2009, 09:15 PM
I forgot to say that you will need to slap the sunscreen on when you start taking azathioprine as it increases your risk of skin cancer. Not cool to be wearing SPF 40 on a cold English February morning but I'd rather that than skin cancer.

Yes, whack-a-mole indeed!

Doug
03-30-2009, 10:51 AM
By the way....I run a hotel and yesterday I decorated with bunnies.:D
lisa Coffeelover

(we would not expect anything less....!)

Shannon T
04-10-2009, 02:56 PM
I experieced severe hearing loss and weakness. GP of 30 years sent me for blood tests on 2/25/09 and sent me to ENT on the same day, 2nd opinion ENT on 3/19/09 and Rhuematolist by 3/25/09. On 4/2/09 had a diagnosis. On 60 mg Prednisone and start Cytoxan Monday.

Guess Houston doctors worked well for me. But hearing loss and balance loss are terrifying. If I can't hear and walk I can't work.

Started balance therapy today and stopped taking Meclizine and Diazepam because they made my balance problems even worse.

Hearing not stable so no hearing aids yet.

So much to absorb in one week and had to put my beloved 12 1/2 year old Chocolate Lab, Annie, to sleep this morning, cancer etc.

Appreciate a place to let this out so maybe it will press a little more lightly on my heart.

jola57
04-10-2009, 04:25 PM
Hello Shannon, I share your hearing trouble and can relate to the terrifying moments. Unfortunately for me both medicines have not restored my hearing to what it was before. When I tried the hearing aids even my tinnitus (ear ringing) was gone but I just didn't feel I need one as yet. Your balance should come back once the inflamation is under control. Do you have any other symptoms, how was WG diagnosed.

Doug
04-10-2009, 04:31 PM
It's like playing 'whack-a-mole' (Whack-A-Mole, Online Fun, Dorney Park (http://www.dorneypark.com/public/online_fun/mole.cfm))

What a hoot! Much more fun than the whack-a-mole games in pizza emporiums (emporia????) Plus you can go for in in the privacy of your own computer place. :p

Doug
04-10-2009, 05:02 PM
The hearing loss is very stressful. I lost hearing in my right ear due to a severe media otitis infection during my run in with herpes zoster. (Oh yes, as a Weggie, you will be more susceptible to infection the rest of your life, but never so much as when you are in treatment, or, after things stabilize medically, any time you become run down.) The worst part is loss of stereo hearing. When my cellphone rings, it better be where I know where it is because I hear it but can't gauge where the sound is coming from!

As you can see from the avatars and comments in this formum, there are lots of animal lovers (whack-a-mole aside!). Pets aren't animals but members of the family long before they pass or have to be euthanized to spare them pain: I, too, am sorry for your loss. That's a long life for that breed.

Anyway, I hope we regulars on this forum can be of help as you work through the issues your illness brings up. I hope, too, you have a very supportive boss and good medical coverage. That, plus a good support group or two will help you through this unsettled and unsettling time.

Shannon T
04-10-2009, 08:47 PM
The balance restoration is great to hear. Thank you.

I have had lumps that just appear on the top of my hands. They swell and are painful. The last time it happened to my left hand (left handed) and a tendon was severed to ring finger. Surgery will be required.

Then I would awaken in the morning and would experience significant pain that was not there the night before, shoulder, ankle, knee, horrible fatigue, chest pain (had to use wheel chairs at the medical center 4 times because I just could not walk). Dizziness comes and goes. Blood red eyes. Sinus infection, nose draining for weeks, cough.

Diagnosis by Rhuematologist - used ANCA test as indicator along with head MRI showing sinus disease and prominence in brain thought to be arachnoid cyst. He said a definate diagnosis would require a biopsy. Said one could be taken of sinuses but did not think it was necessary at this point. Cytoxan starts Monday.

Thank you for your response.

Sangye
04-10-2009, 10:20 PM
Hi Shannon,
Nice to meet you -- I'm glad you got diagnosed so fast and found this group so fast, too. I'm so sorry to hear about your dog Annie. I hope your heart heals quickly, because it's just devastating to lose an animal.

The lumps on your hands don't sound like Wegs, though. (Well, at least I haven't heard of that symptom. There are so many!) Your other symptoms sure do, so it's possible you have an overlapping autoimmune condition.

Anyway, I'm glad you're starting treatment right away. Keep us informed--there's a lot we can help you with, and this is a great place to just vent, too.

coffeelover
04-11-2009, 06:53 AM
Shannon,

Welcome to the group. I have a quick question....are the "lumps on your hands" ones that come on suddenly like a swelling?
Prior to my diagnosis, I would get swelling areas that would come and go in different areas of my body. (hands included) I decided that weather changes were a significant factor in my "traveling pains" as I called them. I told people I was just like cattle in that I always knew when the weather was going to change and knew when it was time to get to the barn before the storm hit.
My "barn" was to relax and do nothing until the symptoms passed. Which they never completely did. I was originally diagnosed with palendromic Rheumatism and put on medicine(hydroxicloroquine-a malaria drug) for that that helped with these pains, but after my stenosis surgery, my rheumy decided to do further testing and diagnosed me with WG.
Anyway...just another WG individual story. We are all so different, but yet the same.
Lisa coffeelover

Sangye
04-11-2009, 11:06 AM
I told people I was just like cattle in that I always knew when the weather was going to change and knew when it was time to get to the barn before the storm hit.
Lisa coffeelover

Oh, no... It wasn't bad enough that we implicated innocent rabbits, but I can see that now we're gonna spin cattle into our Wegs web.... Like "Which came first, the rabbit, the cattle or the Wegs?" :D

Doug
04-11-2009, 12:33 PM
Well, between semesters at university, I did work on cattle ranches. I was exposed extensely to bovine "stuff". Once a dairy cow ("Honey" the Jersey) mistook me for her calf and licked my hair with a juicy, rough tongue. Ick! I never was a country kid, though horses are great!:(

Jack
04-11-2009, 06:24 PM
The lumps on the hands are just another Wegener's symptom and will go with the immune suppression treatment along with all the other symptoms. At least, mine did! I had three different types of lump, some looking like warts, others joint swelling and my hands used to bleed on the steering wheel! Yuk!

coffeelover
04-12-2009, 01:03 AM
Thanks Jack! It is always good to know that I am not going crazy with these odd symptoms of WG.

Doug I knew a Nebraska boy would have a cattle story, after all aren't you in cattle country?

bunnies have been exhausted, so cattle it is? ha ha
LIsa

Sangye
04-12-2009, 02:00 AM
Moooooo....!!! I think cow faces are about the cutest thing. My dog Patch--the white/black dog in my avatar-- actually moos like a cow, and his big pink lips curl up when he does it. Anyone who's heard him (as in, anyone who lives within 10 miles of us) swears he's a baby cow.

Oddly, one of his other nicknames is "Bunny Boy."

Doug
04-12-2009, 02:34 AM
Get out of here! You trying to make me wet myself???? I'm still choking and laughing! "Bunny Boy": Get out of here again! "moos like a baby cow" was more than my poor heart could stand today! This has to be the best posting this week at least! (MAYBE EVER!) :D:D:D:D (This a 5 grin posting, but you know the rules!)

Doug
04-12-2009, 02:55 AM
1.7 million Nebraskans, 15 million cows. Or maybe it just seems that way. Most are to the east in the Sand Hills. As for exhausting the bunny theme: Hopalong Cassidy. Oh wait, he was a singin' cowboy. which brings us back to cows. Man, I'm still choking and laughing about Patch the pooch who moos like a calf! No wonder we like dogs, eh?! (Cow faces are sweet!) p.s. A rabbit "screams" like a human baby when it is slaughtered. It's blood-curdling.

Jack
04-12-2009, 05:42 AM
A rabbit "screams" like a human baby when it is slaughtered. It's blood-curdling.
Too much information! :(

Doug
04-12-2009, 06:04 AM
You probably don't want to hear what happens to cattle (sweet faces and all) when they trot single file into the abattoir, then, either? :(

pberggren1
04-12-2009, 11:27 AM
Speaking bovine,

Between June of last year and February of this year I drank about 4 liters of milk a day. I did this to help ease the dryness in my throat. My sinuses produce a lot of mucus and a lot of it goes down to my larynx and dries up there creating much discomfort. Drinking the milk coats the throat and loosens up the "chunks" as I call them. I am then able to cough them up and talk normally again.

Anyway, down at the local pool hall where I play, the bartender there sympathised with me and would buy me Jugs of milk and not charge me for it. He would label the Jugs: Phil's baby moo moo juice. All I would have to do to get more was make a mooing sound. People told me they couldn't tell the difference between me and a real cow.

Speaking of Nebraska, there are a lot of famous people from there: Fred Astaire, Marlon Brando, William Jennings Bryan, Warren Buffet, Johnny Carson, Willa Cather, Dick Cheney, Buffalo Bill, Henry Fonda, Gerald Ford, Malcolm X, Nick Nolte, John J. Pershing, Chief Red Cloud.

I'm sure there are more.

Doug
04-12-2009, 02:10 PM
Speaking bovine,

Between June of last year and February of this year I drank about 4 liters of milk a day. I did this to help ease the dryness in my throat. My sinuses produce a lot of mucus and a lot of it goes down to my larynx and dries up there creating much discomfort. Drinking the milk coats the throat and loosens up the "chunks" as I call them. I am then able to cough them up and talk normally again.

(Doug puts in this note: Crazy Horse died an hour's drive from Alliance, and is alleged to have been buried in the Rushville area, in a crack in a butte. His parents collected his body at Fort Robinson, knowing his grave would be desecrated because he was so famous, and chose the burial place so well no one's found it to this day.)

Anyway, down at the local pool hall where I play, the bartender there sympathised with me and would buy me Jugs of milk and not charge me for it. He would label the Jugs: Phil's baby moo moo juice. All I would have to do to get more was make a mooing sound. People told me they couldn't tell the difference between me and a real cow.

Speaking of Nebraska, there are a lot of famous people from there: Fred Astaire, Marlon Brando, William Jennings Bryan, Warren Buffet, Johnny Carson, Willa Cather, Dick Cheney, Buffalo Bill, Henry Fonda, Gerald Ford, Malcolm X, Nick Nolte, John J. Pershing, Chief Red Cloud.

Says Doug: Isn't that enough? Sandy Dennis (the mousey wife of George Seegal in "Who's Afraid of Virginia Wolfe" and great friend of Dick Cavett), Robert Taylor, Doc Everton (invented the strobe among other things), Howard Hansen the composer, and the guy who concocted Kool-Aid. Marie Sandoz lived in the Rushville area, and her father, Jules Sandoz (as in "Old Jules", M.S's first book), is buried in the Alliance Cemetery.

I thought milk promoted mucus formation... On the other hand, you and Patch the Pooch should get together for a contest to see who can bring the cows in! If I drank four liters of milk... Phil, Phil, Phil! I hope it was skim!
.

pberggren1
04-12-2009, 06:37 PM
Actually Doug it was mostly 3.25%MF, Homogonized. I went on a very strict diet of no meat, dairy, gluten, etc. Basically just ate fruit and vegetables for 2 and half years. No change in symptoms during this time and no change when started back on regular foods again.

Jack
04-12-2009, 11:23 PM
I tried going lactose free to reduce the mucus production - no change! :(

Doug
04-12-2009, 11:53 PM
The more I know the less I know! I keep finding out that I had a relatively easy time of it compared to many of you. You guys need to be the YouTubers!

coffeelover
04-14-2009, 07:49 AM
"Phil's baby moo moo juice. All I would have to do to get more was make a mooing sound. "

Oh my! We have sunk to a new low.....

I almost, took a pic of a MN farm with ...you guessed it...dairy cows...yesterday while walking with my siblings after a large non anti inflamatory meal. But, I chose not too as I thought maybe that was going to be too low for this group?
I too, thought milk would increase mucus production and personally, I stay away from the stuff. Always have.
LIsa

Gail
04-14-2009, 01:33 PM
Hi Shannon,
I also have the hearing loss, and wear hearing aides now, on the up side, I say to all the family when I've had enough of them, 'thats it, I'm turning you lot off!!' it's quite daunting not hearing all the little sounds anymore, like wind, birds or the page when you're reading amagazine but you will adjust. IWhen/if you get fitted with aides it will restore your balance. I am lost without mine now. I am so sorry to hear about your beloved dog Annie, we have four dogs from 5-12yrs in age, they are such a comfort, so I am feeling of you.