Hi! Guys

[Reetsky]

Thought I'd share my story with you. It can take a long time to come to terms with this illness and the trauma you go through to get to the other side.

A year ago I felt unwell. Slow build up of real nagging pain beginning in my hands, going into my wrists and then moving to my lower legs plus lethargy. After about a month of this i went to bed one night, lay down and got right back up again with incredible pain in my lower jaw; it was like a searing burning heat. Relative took me to A&E (ER) where doc diagnosed severe ear infection, prescribed antibiotic, ibuprofen and sent me home to rest.

A week later, didn't feel better so made emergency apt with GP. GP was young locum who checked ear, said I hadn't given meds long enough to work and should go home to rest. Duly did this but week later still felt really unwell so made another emergency apt with GP who then diagnosed Mumps! Gave me ibuprofen and co-codamol and said rest some more. Duly took these tablets and was violently sick; don't take any more. So, two-and-half weeks later, by now unable to eat (no appetite) or drink, I phone to make another emergency apt but was told by receptionist that she would call back. GP calls back instead for phone consultation. "What can I do for you (:crying: - didn't he read my File?). So I explain, as above. "What colour is your urine" he asks? Like tea says I. Not eating or drinking, too weak to try now. " ok says he, take a teaspoonful of water every 15 minutes". :w00t: Did he not hear me say I couldn't manage to drink. Anyway, I take one teaspoonful of water. It tastes unpleasant so don't manage any more.

Couple of days later I ask relative to take me back to hospital where I am instantly put on a saline drip (15 bags full over 2/3 days), am admitted to high dependency ward for tests and assessment, then moved to intensive care where they finally realise that my lungs are bleeding and kidneys failing. Go on to life support (ventilator and feeding tube etc) and family are called in as I may not make it through the night. Obviously did :sneaky:! After one week I am moved to the renal unit at another hospital. Dialysis required to remove the 15 bags of saline that the kidneys can no longer cope with (2 litres per day removed), blood transfusion (haemaglobin too low), kidney core biopsy taken then moved to a third hospital for blood transfusions and x-rays and plasma exchange to clean out the ANCAs attacking my body. Taken back to Renal Unit to have appropriate meds prescribed and observed for effects.

3 weeks ill at home, 6 weeks in hospital then discharged back home. Attended renal clin every week for 5 months, now every 3 weeks. Been taking cyclophosphamide but had to be stopped due to adverse effects. Prescribed another moefitil med, same again. Now on moefitil (low dose) but stopped again due to WBC count and haemaglobin being ridiculously low. And so it goes on....:mad1:

I would be dead by now if I had depended on my GPs care (or lack of it!) and not taken matters into my own hands by going back to A&E.

but, I'm still here, still standing and getting on with life best I can. Nice to meet you all.

[mishb]

Wow, Reetsky, I'm so glad you got back to the hospital.

Going undiagnosed is basically part of this package that we have.
It is scary that there are so many stories just like this........surely doctors can all work it out by now, but unfortunately it is not so :crying:

Are you still going to the same GP for your normal medical requirements? I bet he/she is doing things differently now.

[Alysia]

Hi Reetsky.
if you are a weggie this is the best place to be in :hug2:
you have being through hell and back. very scary :w00t:
you were lucky to survive it.
the negligence of the docs makes me so angry :predrage:
I think you should find yourself good WG doc
welcome.

[Pete]

Hello Reetsky,

Welcome to the forum. Hope you get the information you need. I second Alysia's advice about getting a good weg's doc. They're invaluable when you're trying to sort out symptoms (as in do I have the flu or is this the beginning of a flare??).

Also, where are you from in Scotland. My grandfather emigrated to the US in 1902 from Dundee.

Good luck and better health!

[Reetsky]

Hi M

Still with same docs at moment, only just recovered enough to think about changing. However, my meds are free so it costs GP practice a fortune. There is some justice there after all.

[Reetsky]

My Consultant at hospital is very good. It's the potential flare diagnosed as 'mumps' that will concern me.

[Reetsky]

I'm living in Hamilton, South Lanarkshire but my Son went to university in Dundee. Thanks everybody for quickest welcome and responses. It's good to feel supported.

[Reetsky]

Yesterday is history, Tomorrow is a mystery, Today is a gift. That's why it's called the present. - ​that Chinese fella Confu..........

[HopeinTN]

Welcome and glad you found us!

[annekat]

Welcome, again. Your story sounds so typical and very different at the same time. So many of us have had to take matters into our own hands to get a diagnosis and save our lives. So many convolutions to go through to find out what we really have! Mine started with an ear infection, too, followed by 2.5 years of ear and sinus problems with intermittent joint pain before it went into my lungs and became bad enough that I was diagnosed, in a roundabout way. If I hadn't already heard of Wegs and found this forum, I would not have know what to look for or ask for. Even then, I had to argue with the doc in order to get taken seriously. It's fun to prove doctors wrong sometimes.

[Barbara N]

You sound great and like a very strong person. It is good you finally took over your treatment. I have a much smaller but similar story my hands look like I put them in boiling oil and are so painful. I was prescribed antibiotics and some very expensive hand cream. They kept getting worse but each doctor did more or less the same so I made a private appt. with a doctor who believes in me and also who discovered that I had WG and he said no cream will get rid of that you have to back on Pred, so I did event though I hate it and now they a starting top improve. It just shows with this disease you have to take control yourself and if you don't agree with the doctor get another one until you find one you like. Good for you coming back to a better life. I am sorry you had to go through so much at the hands of incompetents.

[Reetsky]

Hi Barbara, nice to meet you. You would think that by now clinicians would be more clued up on this illness. There are a few sites on the Internet where you can get information but in my case my Consultants have told me they don't know what affect the prescribed meds are doing to my system. All they are doing is trying to dampen down the WG, the rest I have to worry about. Keep well and positive.

[annekat]

Hi Barbara, nice to meet you. You would think that by now clinicians would be more clued up on this illness. There are a few sites on the Internet where you can get information but in my case my Consultants have told me they don't know what affect the prescribed meds are doing to my system. All they are doing is trying to dampen down the WG, the rest I have to worry about. Keep well and positive. I still say that this forum is a better source of info than most of what you find on the internet, although there are some good pages on the Vasculitis Foundation website and other good links that people have shared on here. You also might try Marta's Babbly Blog.... you will find links to it in her posts on this forum, and try Andrew's web page on WG..... Some of these things may be found in the Stickies that are listed at the beginning of the forum main page.

[Reetsky]

G'day! Had bloods taken today. Off to renal clinic on Thurs. will know then if WBC count (currently 236) and haemaglobin (currently 10) have improved and whether I remain off Moefitil (this is what is causing the drop in levels). All the meds make me feel as if I rattle when I walk!! What a journey! :glare:

[marylz]

Welcome Reetsky! I think you will enjoy all the supportive people you will "meet" on this forum. It has a lot of good info on it!

Mary

[Joyce3692]

Hi your story sounds a lot like mine. Breathing tube the whole bit. Glad to see you are still with us. Good luck on you healing process.

[Barbara N]

I still say that this forum is a better source of info than most of what you find on the internet, although there are some good pages on the Vasculitis Foundation website and other good links that people have shared on here. You also might try Marta's Babbly Blog.... you will find links to it in her posts on this forum, and try Andrew's web page on WG..... Some of these things may be found in the Stickies that are listed at the beginning of the forum main page.

All but one of my doctors here tell me that since the can't cure my what they can do is keep me comfortable and prepare me, I assume for the up coming death. I am having a full flare at the moment and I fell of my horse yesterday so I really hurt. I have to in for xrays today. That was all I needed at this time. It was completely my fault, she was going great and we were having a wonderful ride but >I forgot to tighten my girth ant the saddle slipped around to her side and I was having a hard time staying on and she started to buck because the saddle was falling off.

[Barbara N]

I still say that this forum is a better source of info than most of what you find on the internet, although there are some good pages on the Vasculitis Foundation website and other good links that people have shared on here. You also might try Marta's Babbly Blog.... you will find links to it in her posts on this forum, and try Andrew's web page on WG..... Some of these things may be found in the Stickies that are listed at the beginning of the forum main page.

Hi Reetsky my answer to you is farther down the page on a mail to annekat, I don't know how i missed not putting it here. I just don't understand computers.I started a blog because I couldn't find any information so I started my own web, then I found this forum and found most of my information was wrong so I stopped writting.Maybe now that I know a lot more I will continue with my blog. I have had no luck with the Vasculitis Foundation or the auto-immune or the rare disease foundation-. I tried them all last year and they were all very nice and now I am officially registered as having two rare diseases. This year again, I wrote to alll of them and talked on the phone at great length and they never even sent me a pamphlet

[Reetsky]

Hi Barbara, sorry to hear your unwell. Keep asking questions and you will get answers from fellow sufferers. This site is superb and the people on it are all like us, victims of this pernicious assassin. :unsure:

[annekat]

All but one of my doctors here tell me that since the can't cure my what they can do is keep me comfortable and prepare me, I assume for the up coming death. I am having a full flare at the moment and I fell of my horse yesterday so I really hurt. I have to in for xrays today. That was all I needed at this time. It was completely my fault, she was going great and we were having a wonderful ride but >I forgot to tighten my girth ant the saddle slipped around to her side and I was having a hard time staying on and she started to buck because the saddle was falling off. I'm so sorry, Barbara. But if you can ride a horse with a full flare, I think your doctors have the wrong attitude and aren't giving you much credit! I hope you get through the flare and any injuries from the fall in short order and get back to your better days again!

[annekat]

Hi Reetsky my answer to you is farther down the page on a mail to annekat, I don't know how i missed not putting it here. I just don't understand computers.I started a blog because I couldn't find any information so I started my own web, then I found this forum and found most of my information was wrong so I stopped writting.Maybe now that I know a lot more I will continue with my blog. I have had no luck with the Vasculitis Foundation or the auto-immune or the rare disease foundation-. I tried them all last year and they were all very nice and now I am officially registered as having two rare diseases. This year again, I wrote to alll of them and talked on the phone at great length and they never even sent me a pamphlet Yes, Barbara, continue with your blog. You can correct the things that are wrong. The more blogs, the better! I'm sorry you have had so little help from the organizations you mention.

[Reetsky]

I'm appalled at the lack of real face to face support for WG (GPA) sufferers. Foundations, Societies and Groups exist that print glossy info booklets and pamphlets and make them available on the Internet but try suggesting sit down, face to face chats about the impact this disease is having on you and their eyes glaze over.

It is being proven that talking about traumatic events, getting the fear and anxiety out, aids healing. People who are able to talk about it get better quicker. This Forum is an aid to improvement! You are not alone.

Questions, no matter how banal, nieve or silly you may think they might be actually lead to helpful and informative responses. They might be researching the clinical aspects of this disease but we are learning about the human cost and limitations that it can put on your life.

Can you imagine the uplifting, healing and spiritual atmosphere there would be if everyone on this Forum got together in one room? This is the closest thing to that. Sharing, caring and understanding heals.:w00t:

[annekat]

I can't imagine life without this forum. I hate to think of the old days before the internet when this wouldn't have been possible.

[Joyce3692]

I am new to this whole illness myself. I didn't have to argue with my Dr. Just am changing to one who specializes in autoimmune illness. Hopefully, he will not add me to the group of "you have a cough, therefore, your systems should be... just like "everyone" else". Well, we all know, with WG, we are Not like everyone else. Good luck on your recovery. I am glad I found this forum. I know already, I will help me to coup with this much better, knowing there are others out there that I can chat with and get advise. Thanks everyone

[Alysia]

Can you imagine the uplifting, healing and spiritual atmosphere there would be if everyone on this Forum got together in one room? This is the closest thing to that. Sharing, caring and understanding heals.

Hi Reetsky and everybody, yes I can imagine that :love:
I wish we could all be together at the same room
although this is what we ARE doing "virtually"
in another post Andrew wrote something about organizing a meeting....
maybe just my imagination, maybe not: Israel is in the "middle" between Europe, Australia, and US/Canada... I wish you were coming here...

[Debbie C]

Hi Reetsky...like everyone else I want to welcome you to the forum and be the first to say I love the picture you have posted !!!! If nothing else that makes my day:biggrin1: But I am sorry you had to go thru all that mess to get over your ear infection and the mumps ! It is very important you find a good dr. that is familar with wg and get on the right meds,as you found out your life depends on it. I hope your bloodwork comes back good, I went and had mine done today as well so we shall see. In the meantime keep us posted and good luck.

[Reetsky]

I'm glad you like my Guardian Angel! He's quite dishy, isn't he? Bloods were good but now on another med for high blood pressure and protinuria!! And so it goes on.............

Yesterday is history, tomorrow a mystery. Today is a gift, that's why it's called the Present. What are you going to do with your present today?

[annekat]

Reetsky, I thought maybe that was YOU in the pic, but was afraid to ask!

[Reetsky]

Sorry Anne, yes the photograph in my info area is me but the Angel is a picture I found on the 'net'. Don't be afraid to ask me anything, will always answer where I can.

[Meredith]

I had the same problem - gland started swelling up on face, went to doctor multiple times over a 3 week period because of so much pain. He diagnosed me at first as possble ear problem, then mumps, etc. On high dosage of antibiotics. Finally one weekend went in (they were open on Sat. mornings) and when he saw me he patted me on my leg and just said to "hang in there things would be better in a few days". When I mentioned maybe I needed to go see a Eye, Ear, Nose specialist I could tell it made him mad. Long story but I made the appt. and went to specialist who saved my life - still took 3 months to figure out what was wrong but as soon as he saw me he put me straight in the hospital and started running tests. The last test he did was the one to check for Weg.

[Reetsky]

Hi there. Don't know if you've read my 'Weggie story' but similar to yours except I wasn't diagnosed until I was admitted to hospital, put on life support, family called in as might not make it through the night, moved to a renal unit, dialysis, blood transfusions, kidney core biopsy, plasma exchange more blood transfusions then shipped to a third hospital. Don't let medics tell you how you feel. Be adamant, forceful and question their diagnosis if you need to. The alternative can be fatal - almost was for me. That condescending Pratt who patted you on the leg could have killed you through ignorance. You go girl, well done you for taking the initiative.

[Meredith]

I think if I had not been so sick I would have done something - at least turned him into the Board. I did tell everyone about him and told them "I wouldn't take my dog to him"

[annekat]

Sorry Anne, yes the photograph in my info area is me but the Angel is a picture I found on the 'net'. Don't be afraid to ask me anything, will always answer where I can. No problem, Reetsky, I just didn't want to assume that it either was or wasn't you. I have yet to see the pic in your info area.... will make a point of doing that! You can bet the Angel got the attention of a lot of us.

[annekat]

Not sure whether it was the same gland as yours, Meredith, but right around the time my saddle nose appeared, my parotid gland, near the lower front of the ear, got all swollen up. So I had two reasons to go to the ENT I'd been seeing for a couple years; he took biopsies on the spot both of the parotid gland and the nasal septum, which led to my positive dx for Wegs. I never heard whether the gland had evidence of Wegs in it, but at least I knew it wasn't cancer, and the swelling died down soon after that, maybe after I started the Wegs drugs, I don't remember, but I was already on prednisone so had a head start.

[annekat]

No problem, Reetsky, I just didn't want to assume that it either was or wasn't you. I have yet to see the pic in your info area.... will make a point of doing that! You can bet the Angel got the attention of a lot of us. Reetsky, I just looked at your sideways pic in your info section and you are apparently a woman (a nice looking one, too)! I apologize, I don't know where I got the idea you were a man. Our Weggie minds get confused sometimes, as do some of us who aren't Weggies! And yes, the Angel is VERY dishy!

[Reetsky]

Nope. Definitely a woman and thank you for the compliment; gratefully received. I chose the angel 'cause this is how I would like to imagine him. A strong body to defend me and fight my corner. Muscley arms to catch me when I fall and put me back on my feet again. Soft downie wings to surround me and comfort me when I need shelter and nice to look at so he makes me smile. It is said that angels don't have a gender but I've taken a little poetic licence!

[Alysia]

Reetsky, I just looked at your sideways pic in your info section and you are apparently a woman (a nice looking one, too)! I apologize, I don't know where I got the idea you were a man. Our Weggie minds get confused sometimes, as do some of us who aren't Weggies! And yes, the Angel is VERY dishy!

Hi Anne. Im so glad that you are so honest.
to tell the truth, I also thought reetsky is a boy :blushing: because of the avatar and the sound of the name "reetsky". but I thought that I was mistaken because English is not my language.

Reetsky, I like your writing :thumbup:

[mishb]

Yep, me too :blushing::blushing:
Sorry Reetsky.

I would put the other picture - cute you :biggrin1:
(except you are sideways) :flapper:

[Barbara N]

Hi Anne. Im so glad that you are so honest.
to tell the truth, I also thought reetsky is a boy :blushing: because of the avatar and the sound of the name "reetsky". but I thought that I was mistaken because English is not my language.

Reetsky, I like your writing :thumbup:

peoples avatars can be very strange peoples avatars can be very misleading, I don't think Michelle is Kermit the frog and Anne is a lilly. My damn keybaord is broken and types where and what it wants. Sorry for the mix up. The person chosen in the avatar is very strong yet soft at the same time and I can see it would be comforting we can't tell by you name if you are male of female. It just didn't seem to make any difference. You are Reetski and we love you. Young old, male or female. Most people domn't put a resemblance of them selves as an avatar but I finally did with the help of my family and my horse. She over shadows me. I also like your writing.
Whether girl or guy the picture is very eye catching. I never said anything because

[Reetsky]

:hug3: I'm in remission! However, will be on immunosuppressants for life, Oh! Joy!! Here's hoping no flares :scared:

[annekat]

Congrats, Reetsky! :thumbsup:

[mishb]

Congratulations Reetsky........medicated remission is way better than no remission at all.

I hope one day that you can also become med free