Hello, from eastern Canada

[Hal]

Hello all, I have to admit I never saw this one coming. I feel like I was standing in the middle of a meadow on a clear blue-sky day, and then hit by a train out of nowhere, left in a crumpled heap among the flowers. As late as mid-July, I was an active hiker spending our week-ends enjoying the beautiful coastline here in eastern Canada. Then, for whatever reason I am still trying to understand, I was struck down with WG, and my life has now been turned completly upside down. I am 50 years old and male.

In hindsight, it was probably brewing for a little while, as late last year I developed sinus polyps, and required surgery to remove them earlier this year. At the time I figured it was just "one of those things", but now after reading the literature on WG, the sinus are one of the areas typically targeted.

My symptoms starting in late July were intense pain in the nerves of my limbs. My Immune system started over-reacting, and I became crippled with arthritis-like symptoms in a matter of days. Painful. It took two trips to the ER before the doctors realized something serious was happening to me, and they admitted me. During the first part of the first week the working diagnosis was Reactive Arthritis, a reaction to either a virus or bacterial infection. They did numerous blood tests, and they all came back negative.

Thankfully, the hospital I was in has a world-class Rheumatology doctor. She listened to my symtoms and was able to quickly zero-in on WG, confirmed by the specialized blood tests. In many respects, after reading about how people can go on for a long time without ever properly being diagnosed, I should consider myself fortunate I guess, to have such a short period of time pass before the WG struck me down, and I was diagnosed and started treaments.

That initial attack has left a lot of tissue damage that will need time to heal. I have started the Cytoxin now, and have my fingers crossed that in time, I will heal. I have blood clots in my lungs, swollen legs and feet, and most worrying, extensive nerve damage in my legs and feet. The lack of sensation in my feet is really limiting my mobilty. Has anyone else suffered nerve damage, and if yes, what are you experiences with the healing process for that please?


I find it very difficult to talk and even write about what has happening to me, so typing this has been quite theraputic. Thank you for reading.

[DEE]

Im just going a welcome to this group as there is alot more people more experiancec that me who will answer your questions
listen to them they have heiped me out many times
i was reluctant to go onto thr forum at first but they have be my life line on many a bad day
stay with us it helps DEEx

[Sangye]

Hi Hal, welcome to the group. I'm sure most of us here can relate to the feeling of being hit out of nowhere. At my first visit, my Wegs doc at JHU told me one of the reasons Wegs is so harsh is that the majority of people it affects didn't have diagnosed medical conditions before, so it's not like they were accustomed to being sick and taking meds.

It's amazing that you were dx'ed so quickly, though I'm sure that isn't much of a consolation right now. I also had tons of blood clots in my lungs and have an ongoing problem with lower extremity swelling. Hopefully your swelling will improve as the Wegs gets under control.

To help your nerves recover (and help prevent further damage), I suggest a quality B complex vitamin. If you're on diuretics you may need more than the usual dose. I suggest you see a holistic physician for this, since over-the-counter brands are poor quality. You may also benefit from other nutrients and/or herbs. With nerve involvement, it's important to act quickly. You have a small window of opportunity to recover function.

[elephant]

Welcome Hal, give it time...you will heal but it will take time. We are here to listen to you and help you in any way.

[Geoff]

Hello Hal,
Tough luck on joining our 'Merry Band' but congratulations on finding this web site. Like you I had lots going on in my lungs (scan looked like there were spiders in a web making frenzy!!) also nerve damage in my feet (which fortuantely has repaired in the 2 years since DX) It sounds as tho you may have fallen on your feet with regards to the rheumy and associated care. Be prepared for life changing developments but take heart, there is life after DX! Keep us informed as to your developments.

[pwc51]

Hi Hal, I will add my welcome to the others. Like you I lead an active life, lots of walking, some climbing, leading expeditions to remote places for months at a time and lots of sailing. By the time I was diagnosed, which did not take long, I was 57 and unable to climb a flight of stairs without getting breathless. (I thought it was a symptom of 'old age'!) I have to say I was able to start walking again after about a month of treatment and gradually built up over the next few months. During our brief summer I was walking reasonably again - covering nearly 4 miles in an hour. Have not walked for much more than an hour though (there never seems to be enough time!). I had 6 months of Cyclophosphamide and am now on mtx and prednisolone. Just had a fantastic days sailing - I can't say life is back to normal but I am fortunate to be able to pursue at least some of my original hobbies in a modified form.

Once the drugs start working, apart from some of the side effects, I have to say I started to feel better relatively rapidly.

[Sangye]

Wow, pwc51 that's awesome. I'm glad you're doing so well! :smile1:

[marta]

Hi Hal and welcome to a place nobody wants to be welcomed to but everyone is glad that they are, if you know what I mean. This is a great place to be when you're sportin' WG with really really good people. There is a wealth of info, support, wisdom compassion and understanding here (none of it coming from me, other than the compassion and understanding of course). These folks have been here for me and helped me out through my moments of panic and I'm sure they'll be there for you, as will I.

Oh, and it's just as theraputic for us to read what you write as it is for you to write it. It shows me that I'm not imagining what's happening to me (as I sometimes fear I am) and that it is in fact real symptoms and thoughts and experiences that go with the gig. It also shows me that in it's reality, it is something that can be taken on and eventually overcome.

Here's to a future where we are all stronger and healthier and this has been just a blip on the road and a memory that has made us all better people - if that's possible (us being better people that is) :w00t:.

[jola57]

Hi Hal and sadly welcome. Glad you were diagnosed so quickly and started on our wonderful meds.

[JanW]

Hi, Hal, and welcome. I was diagnosed in January 2010, and I am doing better every month on methotrexate. I had surgery to repair my windpipe and I have a saddle nose which is deforming (I get some second looks, but not children running away screaming -- yet), but at least for me, the drugs have really worked. I had lots of left foot/ankle pain so I know what you mean about mobility -- for months I couldn't walk more than a city block, had a cane, and a VERY pronounced limp -- it really does a number on your self image. And it wasn't even that I was such an active person - just a regular old mom.

[elephant]

I find it interesting that wegeners attacks the foot/ankle....what is so special about our foot?? More nerves?

[drz]

Hi Hal, I will add my welcome to the others. Like you I lead an active life, lots of walking, some climbing, leading expeditions to remote places for months at a time and lots of sailing. By the time I was diagnosed, which did not take long, I was 57 and unable to climb a flight of stairs without getting breathless. (I thought it was a symptom of 'old age'!) I have to say I was able to start walking again after about a month of treatment and gradually built up over the next few months. During our brief summer I was walking reasonably again - covering nearly 4 miles in an hour. Have not walked for much more than an hour though (there never seems to be enough time!). I had 6 months of Cyclophosphamide and am now on mtx and prednisolone. Just had a fantastic days sailing - I can't say life is back to normal but I am fortunate to be able to pursue at least some of my original hobbies in a modified form.

Once the drugs start working, apart from some of the side effects, I have to say I started to feel better relatively rapidly.

This is encouraging post to give us hope for a better future. I am disappointed that improvement is so slow but encouraged that it seems to be happening even if slower than I wish.

[JanW]

My rheumy says that he doesn't know for sure, elephant, but has noticed that various AI diseases are associated with certain parts of the body more than others. He is still amazed at how well my ankle responded to increasing mtx by 2.5 mg and I'm sure when the next WG patients walks in the door he'll take the foot pain that much more seriously.

[elephant]

JanW, I am so glad to hear that your foot is so much better!

[jola57]

My ankle has a probabilty of having a stress fracture, that is why I am to go to see an orthoped. At the same time they will take out the two toe screwes. I often wondered if it wasn't these screwes that triggered the wegs.

[pberggren1]

My ankle has a probabilty of having a stress fracture, that is why I am to go to see an orthoped. At the same time they will take out the two toe screwes. I often wondered if it wasn't these screwes that triggered the wegs.

what are the screws in there for? how long have they been in?

[jola57]

I had operations on my two bunions at the same time with one repeat because of bone slippage. That happened about 1 year prior to wegs. The screwes were put in to hold the bones in place. They were to be removed in a year but then I got sick and that was that. Prior to that 2 years before wegs I had a burst appendix and a year before that I was totaly anemic and had partial hysterectomy. Its a good thing that I like hospital food LOL I think all the operations and anesthesia and maybe the screwes set off wegs which otherwise might have stayed dormant for a long time. Ah I forgot I had benign cancer in my breast and had an operation to remove part of my breast with a repeat a year later in between the hysterectomy and appendix. MMMM gotta love realy love that hospital food.

[Hal]

Hi everyone, thank you so so so much for your words of encouragement! It is actually wonderful to see such a group of people with so much will to beat this disease.

This too is what I have realized, that the only way to get well is to fight it and let let it take control. I have to admit that is is difficult at times. I am about three weeks into my Cytoxan treatment, along with the Prednisone, along with a bunch of other drugs and vitamins. I look at the months and months of hard slogging ahead, and sometimes I do just bury my head on the bed and take a deep breathe, and then try and get on the with day.

My feet, oh my poor feet! The left leg and foot are swollen with the vasculitis, with some nerve involvment, and the right foot if only half-dead. The bottom it almost totally numb except for the toes. It makes walking and standing an interesting situation for sure. I now use my hiking pole as a cane when out and about. Just think, in mid-July I used those poles to stand on th edge of 300 foot sheer drop cliffs, looking straight down into the ocean. Now, man oh man, I need my pole to help me over a curb!

I find it interesting that people have trouble with stairs. I too have to walk down stairs sideways, holding on to the rail. Going up is actually not so bad, but doing down.... arrgghhhhh.

I am getting regular bloodwork done. My kidney numbers are way too high, so that is being closely watched. I am under doctor orders that if I get as much as a sniffle, to head directly to my family doctor or the ER. To that end, I am trying to minimize the amount of time outside the house, so as not to pick up any germs. I always now use hand sanitizer any time I touch something like the gas pump or even a shopping cart handle.

I have fond memories of what a good night sleep feels like. Since getting out of hospital in August, the most I have slept in a single period is about two hours. Drinking all that liquid to keep my bladder flushed, because of the Cytoxan side-effects, is contributing to that. I almost feel like putting a pee bottle next to the bed (smile).

Thank you for the encouraging stories... hopefully as time passes I too can start contributing the newbies the same way you are helping me!

[Geoff]

. I almost feel like putting a pee bottle next to the bed (smile).

Nice one Hal, you will need to keep a sense of humour about you!

[DEE]

hi Hal
i to go up the stairs slow and steady but find it easier and less painful to come down sidewards :rolleyes1:
feet feel as though im walking on a rough surface some days
keep your chin up DEEx

[elephant]

You will get better every week, month that passes. Just enjoy resting, reading, watching tv or whatever....keep us posted.:biggrin1:

[Jack]

Hi Hal,
I'm sure that with an attitude like that you will do fine, but bare in mind that these are early days for you and it is going to be a long journey with a few ups and downs along the way. I'm not so sure that I would go along with your sentiments of fighting the disease and beating it, Wegener's is too tricky to respond to that sort of thing and just might turn around and bite you! Perhaps a better way is to allow yourself some slack so that your body can recover and have energy left for healing. This may involve a certain amount of acceptance of your condition, but is a long way from any idea of giving up. It is more a case of acknowledging what is happening and then working out the best course of action to minimise the harm and speed the recovery.

[Geoff]

Perhaps a better way is to allow yourself some slack so that your body can recover and have energy left for healing. This may involve a certain amount of acceptance of your condition, but is a long way from any idea of giving up. It is more a case of acknowledging what is happening and then working out the best course of action to minimise the harm and speed the recovery.
Crikey Jack are you some wise old sage or what! I think I will copy this quote down and post it on my kitchen wall as my maxim for life!

[Sangye]

Ditto to what Jack said. :smile1:

[Hal]

Elephant, yup taking it easy is the thing to do.

Jack, wise words indeed. Thank you so much.