Not sure I belong here...but if not here...where else?

[Ellie]

My name is Ellie and I'm a 46 yr old woman from the northside of Brisbane, Australia, and 2014 is supposed to be a much better year than it's proving to be so far (2013 was pretty bad for a variety of reasons, so the only way was supposed to be up!)

My story so far...

Late 2012 I had spots on my legs, and a couple on my arms, which I was referring to as the 'spotty-dotty flu'. My GP did a punch biopsy and the diagnosis was leukocytoclastic vasculitis. I was treated with prednisone, and it settled reasonably quickly.

Early 2014, the LCV returned, again on my legs. My GP decided the recurrence warranted further investigation, and sent off some blood & urine tests. Significant findings included +ANCA-C, -PR3, slightly elevated CRP & SED rate. Microscopic red, white & epithelial cells in the urine. At this point I felt quite well, tho my reading/research had led me to link the chronically blocked sinuses with whatever else was going on, a connection I hadn't made before. I was referred to a rheumatologist at our major hospital, and saw him in early March. They ordered a plain chest film, more blood & urine tests, and referred me to an ENT for a sinus biopsy.

The sinus biopsy was horrific! She did say there would be bleeding...but when the ENT is saying 'oh ****, that's not supposed to happen' and you are bleeding all over the carpet in her very poshly decorated offices, you know something is not going to plan. She thought given the extent of the bleeding (took almost 3 hours to stop), that the likelihood of finding something going on was pretty good...but the test was inconclusive.

Back to the rheumatologist in April, by now I'm also suffering SOB after the mildest of exertions (including heated conversations). Rheum refers me for a chest CT & RFT. CT finds one small calcified mass. RFT is pretty good.

May 6 evening I had some pain in my left ankle...took some paracetemol with codeine (OTC) and ibuprofen, and went to bed. May 7 the pain is back, took painkillers again, by mid afternoon I'm googling 'self-amputation of limbs' for procedural guidelines, so off to the GP I go. He is concerned it might be DVT, so sends me to the hospital. Unfortunately our nearest hospital is not where my rheumatologist is but as I hadn't linked my ankle with the other stuff yet, I went on auto-pilot to Charlies. They gave me progressively stronger pain killers (Panadeine Forte, Endone, morphine, phenternyl) while I continued to writhe on the bed in agony. X-ray, ultrasound, ankle CT all negative. Finally I convinced them to ring my rheumatologist to see if he had any ideas, and he said it sounds like either arthropathy or neuropathy, start her on prednisone. They did, I started on 50mg and am currently on 10mg.

I saw the rheumatologist the following week, and by now I am feeling positively awful. I'm so tired, so weak, eyes are watery, blood when I blow my nose, ankle is still giving me the shits. Rheum isn't sure what it is...I decide that going to the hospital to see a dr every visit is not a good use of my time (I'm still working full time), so I go back to my GP and in tears ask for a referral to another rheum that has offices not in the city.

Saw her yesterday. She's not entirely sure either. She is sure of 2 things tho, that it is auto-immune, and that all the symptoms are linked and caused by one thing.

More tests...see her again in a month.

I understand not wanting to be diagnosed with this godawful thing cos the treatment can be horrible, but I'm also anxious to have a diagnosis so treatment can begin.

I'm getting married in October and have a US honeymoon booked for late Feb next year, and I'm going damnit!

[drz]

Even without a diagnosis I think you had a legitimate need to vent so this was a good spot for you to do so. Hope you get answers soon. many of us know too well the frustration of having serious symptoms with no diagnosis or hope of help for our symptoms. So we can offer empathy for your situation.

[mishb]

Hi Ellie,

Which hospital/specialist are you going to?

It certainly sounds like you should be here and I can try and point you in the direction of a good hospital, if you are not already going there.

I have just spent 5 days on the Gold Coast and met a lovely lady there who has Wegeners and Diabetes and a few others thrown in.

Ellie, if you are on facebook, we have a Group for WG and I'm pretty sure that there are about 6 people from Brisbane that have the same or similar symptoms.

Check us out at the link below, otherwise we can try and help you on here as well. A lot of knowledgeable people are on this forum.
Hang in there and we will certainly try to get some answers for you. I'm so glad you joined.

https://www.facebook.com/groups/516643745050360/

[windchime]

Welcome to the forum Ellie. It's the best place to be if you do have wegs. There is a ton of information in the archives that should be very helpful to you. It's very frustrating not having a diagnosis and many on here have been or are currently in the same boat. It's a scary time wondering what will happen next and how will I get through the day. NO self amputations though, sounds really messy and painful.

There are many caring, supportive and loving people here on the forum. There is usually someone around 24/7 since this is an international forum. In fact there are several active members from Australia. I'm sure Michelle and Inge will chime in soon. It's a good place to ask questions, vent and share stories. We're all here for each other.

Is is possible for you to take some time off of work using medical leave or something like it? The stress of working full time, dealing with the disease, and wondering when you're going to get diagnosed is stressful. Stress is not our friend it makes the symptoms worse and when you are in remission can cause a flare. So if you can take some time off work until things are sorted out I think it might help you.

Again welcome to the forum Ellie I'm glad you're here.

[Debbie C]

Hi Ellie,I'm sorry for all that you have been through, especially at the ent office.Hopefully you will take Michelle's advice and check out the fb page and maybe her or someone in your area will be able to get you to some good drs. Congradulations on your upcoming wedding and hope you will enjoy the states. I would love to come to Australia. Best of luck to you

[godgirl]

Welcome, Ellie. I am not officially diagnosed, either. My "adventure" started last fall... My rheumatologist is treating me as if I had Wegener's (prednisone and methotrexate), but it's so hard not having that diagnosis! My symptoms are also all over the place - sometimes I feel like a weird hypochondriac. "Is this new symptom a new manifestation, or just nothing?!" So I know how you feel. All the health issues AND the uncertainty of what's going on can be so stressful. By the way, I also work full time and go to school part time, so... I get that, too.

You've found a great resource and a wonderful bunch of people. I'm pretty new here too, and its so nice to be able to ask questions, vent my frustrations, read other people's stories, and know I'm not alone in this.

So again, welcome!

[annekat]

Welcome, Ellie. I'm so glad this forum can be of service to you whether you have WG or something else. I know the prospect of having WG is scary, but really, many of us have come through the treatments just fine and are pretty well stabilized, if not in remission, and living fairly normal lives. It is a "new normal" for many of us, and we must make adjustments, but it could be worse. In any case, you need to get to the bottom of what you do have so you can get proper treatment and be well enough in time for your wedding and honeymoon, followed by the rest of your life. Michelle is very knowledgeable about resources for WG treatment and support in Australia and I'd definitely follow any of her advice. Best to you, and keep us posted!

[Alysia]

Welcome Ellie
it sounds like WG to me. I am sorry for the rough times you are going through.....
you can check on facebook also in the vasculitis group : https://www.facebook.com/groups/332547823431093/
what treatment are you getting ?
since you are living in Australia, you are going to be ok, because of Michelle and her group....
take care and update us. and..... congrat for your wedding. I hope you can enjoy the honeymoon.

[Ellie]

Thanks to everyone for the very warm welcome. I've joined both Facebook groups, thanks for the info.

Mish, I have been seeing Paul Kubler at RBWH but saw Laurel Young privately at Redcliffe on Monday...and really liked her. She has other GPA patients also.

Cindy I'm trying to avoid taking time off work right now in case it gets worse and then I really need to take time off. Fortunately my boss has scleroderma (well not fortunately for him, but you know what I mean), so he understands all too well the difficulties of dealing with a chronic illness. I"m able to come and go to medical appointments as needed, and those days when it's all too hard I just go home. They are getting me a laptop this week so I can work from home if needed.

Alysia...I think it's GPA too...but my instinct isn't enough for a diagnosis...not entirely sure why not...sounds reasonable enough to me!

Glad I found this group...I've been reading for a couple of weeks...and yes it was time to vent.

[Lilly]

Hi Ellie, I welcome you to the site. I have read your story and all the information everyone has given you. I am sorry you are having such a difficult time getting diagnosed, and the things you have been through. I was sick for a year, sinuses mostly and tear ducts clogged, before I was diagnosed. I had to move back in with my parents because I could not work or take care of myself because pain was coursing thru my body from one muscle to the next, all day every day, my joints were so inflamed that I just lay on the couch, in cold sweats. If I had to use the restroom I just rolled off the couch and crawled slowly to the bathroom. It was all I could do to get on the toilet. Then It took forever to get off because of the leg pain. I had red dots on the inside of my hands and bottom of my feet. The ones on my legs got big, the size of nickles and dimes and quarters. My Mother took me to the hospital on Easter Sunday 1990. That's my story of before being diagnosed. Michelle, as you have seen, has great information. I wish you all the best. Keep us posted and again, welcome. Its great to have you here! And Congratulations on your wedding! You have a fantastic fighting attitude! That's what you need.....I was married 2 months after my diagnoses, prednisone at 80mg a day, so I was 30 lbs heavier with a moon face. But my fiancé, did not care! We were married and went to the mountains on our honeymoon.....So Have a great wedding and honeymoon! I wish you the best. Its gonna work out, and we are here for you!