New from the UK

[freakyschizogirl]

Hi all. My name is Sam...i was told on Monday that i have Weg and have to see a specialist.

It seems funny to me how different everyone's story is...so here is mine.

I was first told i had Lupus 3 years ago. But i'm guessing that diagnosis was wrong if i now have this.

I came here by way of ENT, which started 3 years ago after i had a big nose bleed, out of no where. Got referred to the hospital and had tests, nothing came back...bit odd. So my consultant decided to do a biopsy to see if anything was hiding in my nose. Tests came back inconclusive. After that i was told "you only see the consultant once" and was then passed on from person to person for 2 years and was told it was my weight, or it was just something i had to live with. I may be overweight but i think everyone can agree a nose doesnt hold a significant amount of that weight!

So my nose condition has moved on from nose bleeds to other things...which i wont go into at this stage...suffice to say i am well aware of my nose on a daily basis, and my sinuses and i also have Neuralgia.

I digress...so after 3 years i go back to my normal 3 month routine appointment in May and get told i have a hole in my nose in my septum and my nose is collapsing.

So i have another biopsy and blood work...and well here i am.

[misskay]

welcome aboard the WG rollercoaster Sam.... lots of good people here with lots of info.

[freakyschizogirl]

lol thanks

i honestly dont know how to feel at the mo...could burst into tears at any moment.

Suppose just have to wait til i see the specialist

[Jack]

Hi Sam.
I hope you are not going to have to wait too long. Wegener's has a habit of moving very quickly when you least expect it and you can't afford delays. What are your symptoms at the moment?

These are very early days for you so you can expect to go through the whole range of emotions. It takes a lot of coming to terms with, but knowledge of the disease helps a lot and this Forum is a good reliable source. In the meantime, if you want to rant or have a shoulder to cry on, just post and someone will come along to lend some support.

[freakyschizogirl]

Thanks Jack, feel like i need a hug!!

My symptoms are mainly saddle nose, hole in my septum, sneezing, crusting in my nose, nose bleeds that are heavy and long. And lately i've had what feels like phlegm on my chest that clears if i cough but i suppose it could be the WG?? Never really thought much of it.

It shouldnt be too much of a shock really. I have been told for years now it could be WG but no one really followed it up.
The ENT department in the Herts and Essex region are terrible. I dont think they ever cure anyone cos their waiting lists are getting longer and my appoiments always get cancelled.

[Sangye]

Hi Sam, welcome to the group. Ditto to everything Jack said. I think I went through every emotion possible in the first half-hour of hearing I had Wegs. And I continue to ride the emotional rollercoaster, 4 years after diagnosis.

I hope you can get excellent care quickly. We've sure had a lot of new members from the UK lately. A few months ago we got a bunch of Aussies. I think the Wegs dog must be a herding breed.

[freakyschizogirl]

Well its cos its a rare disease, people are collecting now obviously. lol.

[eileenv]

Hi Sam, I live in Romford in essex sorry to hear about the trouble you have had getting a diagnoses. I'm having a nasal biopsy on the 7thoct and then maybe i will get conformation wegs. I've had eighteen months of symptoms but no major organ involment other people on here have had terrible rough times. I've got a deviated septum and left sinus on CT shows it's filled up with muck. I'm currently on pred and plaqunil, nasonex and sterimar, none of which are helping nasal promlems. My ent appointment was marked as urgent i had to chase it up as they never even got the referal!!

[freakyschizogirl]

Thanks for the Hugs elephant...and ya i do need to stop beating myself up.

Jack...i'm expecting this beast to get worse before it gets better...had a letter in the post today for my lung function test next tues...nice to see things moving quickly. And a blood test on tues too...so whoopie!

Eileen, nice to know there is someone close. Do you go to a hosp in Romford?? Good luck with the biospy, my first one was a breeze, the second one wasnt! He took 2 layers of tissue outta each nostril and that HURTS! And the anaesthectic wasnt good this time round, i was so sick!

My ENT consultant wanted to give me nasonex...i've had it before and it didnt make any impact on my problems. I dont like spraying things up my nose...its got enough problems without hosing it with stuff.

[Jack]

I think you need to move away from this ENT as soon as you can. Many on the Forum have had bad experiences with ENT consultants due to their tendency to treat the symptoms rather than the disease because they don't understand what is going on. That is what yours is attempting to do by suggesting the use of a topical steroid. A Rhumatologist or even a Nephrologist (if you have renal involvement) should be in charge of your treatment.