Hey Al, newly diagnosed in Ohio.l

[nurse Bill]

It started out with neurogenic pain in my left foot which quiclkly evolved into swelling of both feet along with the purpuretic rash around both ankles. My doctor got me into a dermatologist who did biopsies of several of the lesions which came back as lymphocytoclastic vasculitis of my feet. Steroids were started after blood work showed an elevated crp and sed rate,with little relief of the pain. I was referred to a rheumotologist for further workup and my anca-c came back at 830. My new doctor had on my second visit a 4 page game plan for my treatment of the newly diagnosed wegener's which she shared with me,which included medications, lab work, and time frame for my treatment. when I was diagnosed it was a reality check for me because I have had pretty good health for a long time and it was very unnerving. I have since spent 4 days in the hospital receiving high dose iv steroids long with po cyclophosphamide and my blood pressure pills. In those 4 days I found that my lungs, kidneys and liver are involved and I met a very attentive nephrologist also. I was officially diagnosed with Wegener's on 9/2/2010 and so my journey begins.

[jola57]

Hi nurse Bill, sadly welcome to our forum. I am glad that you were diagnosed so quickly and started on the wonderful meds right away. Also glad that we get ot take this journey together.
Pretty soon we can all go on a cruise and fill up the whole ship

[marta]

Hey nurse Bill,

You have come to a good place from a not so good place. Your official date of diagnosis was on the birthday I thought I might not have when I went into the hospital in May, and here I am feeling relatively good (I don't want to jinx myself) with some great days and some strange days, but all in all so much better than my diagnosis date of May 09, 2010. I love Jolanta's plan to fill up a whole ship with Weggies and go on a cruise. Maybe we should pitch it to Oprah for her season finale... get all the good docs there too. Take care, stay strong, and you'll be feeling a change for the better soon, I think most, if not all of us did once the drugs hit our systems.

[eileenv]

Welcome to the group Bill, i am myself a fairly new member, but you will find on here a wealth of information and support from it's members. Glad you got such a quick diagnoses you like others on have a very bumpy rideat thr start, i hope now with the right medication you start to recover.

[Jack]

Hi Bill,
It is great that you got such a speedy diagnosis and have docs that seem to know what they are doing. It is good that they have a game plan in mind, but please remember that life with Wegener's is rarely predictable and the changes in direction can come thick and fast until things settle down.
You are now going to need quite a while to get to grips with your new condition so please ask any questions you may have or feel free to just have a rant at the world in general. We all do it from time to time and everyone will understand.

[elephant]

Hi Nurse Bill, Welcome! I noticed you live in Ohio, do you go to Cleveland Clinic for your care. That is where my Wegeners Specialist ( Rheumatologist) is at, her name is Dr Carol Langford. I had this disease for over 30 years and in 2008 I was diagnosed with WG....miss diagnosed all those years. I had a kidney transplant in 1989, and a ton of surgerie after that. I think I am doing great despite the damage it has done to my body.
Bill are you a nurse? I am so glad you were diagnosed so soon, you will do well.

[Geoff]

Hello Bill and welcome to our World Wide Brotherhood, Early days for you with regards to treatment and its true, as you say, that you will feel 'unerved' after years of sound health. Hopefully with continued good medical care (which you would appear to have) you will be able to adapt and get some normality back. Draw strength from this site with the courage and humour within. Keep us informed to your progress.

[JanW]

Welcome nurse Bill and feel free to ask any questions here. There are several healthcare professionals like yourself on here, and many newbies. I was diagnosed in January 2010 and had severe left foot pain as well (thankfully going away with methotrexate and PT).

[Psyborg]

Welcome Bill, I am also from Ohio and was diagnosed officially at the end of July. Not sure who you are seeing for treatment, but we have one of the best groups in the country at Cleveland Clinic, it's been worth the drive up from Columbus for me.

[Brooke]

Welcome Bill, you will find a lot of support, friends, thoughts, opinions, and much more on here! It is good that you were diagnosed so quickly so you can get the treatment right away. Hang in there!