Always a fight

[Geoff]

Good Luck Sam in Cambridge next week, my next visit is the following friday (I'll catch up with you one day!!)

[Geoff]

Good Luck next week Sam when you get to Cambridge. My next visit is the following week (I'll catch up with you one day!!)

[freakyschizogirl]

Another update from me.
Finally got those letters i was fighting for and my Rheumy's tone and overall arrogance in the letters has really hurt me.

Although you'd have to read the whole letter to get a sense of the arrogance here is an example, "...previously seen in the Rheumatology clinic by myself in 2007 when diagnosis of Limited Wegeners was entertained. At the time she presented with epitaxis. Blood tests at the time were also positive for ANA and Anticardiolipin antibodies and hence possibility of Lupus was entertained. At subsequent (3 month) review her nasal symptoms had improved and her ANCA became negative(screen positive but Pr3 negative)."

Also they say in my current CT of sinuses i have a "granulomatous lesion in septum in addition to perforation." I was NEVER told this! Isnt this something they should be discussing with me? And more inportantly what is it?

And finally the following is a short bit from the most recent letter, "...tests done previously showed raised ESR but more recent blood tests showed normal ESR. I note recently checked ANCA positive (C ANACA Pr3 positive) ANA negative anticardiolipin antibodies negative."

Cant anyone help me with this language...i've never heard of a granulomatous lesion (my mum its just a scratch with a scab on it, love her sense of humour!) and not completely sure what all the results mean...generally i know i am getting better but still puzzled by the blood tests. Please let me know if i'm fussing about nothing.

[Jack]

Nothing to worry about in any of that, it is just a description of you first presenting with nose bleeds and because of your blood test result they thought that it might be a disease called Lupus (very nasty in itself!).

"granulomatous lesion in septum in addition to perforation." Just means that you were showing a lot of inflammation and even a perforation to your nose lining. ie. it was in a right mess!

ESR and ANCA are blood tests that indicate the level of inflammation taking place within the body. One normal, one positive and one negative is typical of the confusing picture that Wegener's can produce.

I'm simplifying it a little, but there is nothing there to be surprised by.

[freakyschizogirl]

Thanks Jack, my Rheumy tends to just brush stuff away and not tell me about it. I knew there wasnt anything sinister there but i like to be well informed for when i go back!

Just funny how he doesnt mention the fact he didnt keep me under review and left me out in the Weg wilderness for 3 years.

Jeez, i've got so cynical in the last 10 months!

[Sangye]

I don't see anything in the bit you quoted that was arrogant, etc... That's normal language for a doctor's report, including the word "entertained." Not that your doc isn't arrogant--he may be-- but the letter doesn't reflect it.

A granulomatous lesion is an inflammatory lesion--sort of like a crusty scab that bleeds easily.

[freakyschizogirl]

I think you would have to read the whole letter to get a sense of the arrogance, those bits i typed out are just some that i wasnt fully sure i understood.

"A granulomatous lesion is an inflammatory lesion--sort of like a crusty scab that bleeds easily. "
I'm so ignorant but is this something that will heal??

[Jack]

My nose was in a terrible state too, but it rapidly improved when my Wegener's symptoms were brought under control. It is now no worse than the sort of thing I could expect with a mild cold.

[Sangye]

Yes, with proper treatment the lesions heal, but I don't know about what kind of scar tissue might remain. That's a question for a Wegs doc. If the lesions are on the septum, they will gradually erode holes in it unless the disease process is halted.

An interesting bit of info-- Dr Seo told me once that Weggies generally tend to either make granulomas or have vasculitis (inflammation and bleeding). He said the granuloma-types are easier to treat. I'm a vasculitis-type, which means my lungs like to hemorrhage. It's the hardest to treat. Rtx has been shown to be as effective as ctx, and is particularly good at getting vasculitis-types into remission.

[freakyschizogirl]

An interesting bit of info-- Dr Seo told me once that Weggies generally tend to either make granulomas or have vasculitis (inflammation and bleeding). He said the granuloma-types are easier to treat. I'm a vasculitis-type, which means my lungs like to hemorrhage. It's the hardest to treat. Rtx has been shown to be as effective as ctx, and is particularly good at getting vasculitis-types into remission.

That is rather interesting Sangye. I know i complain too much when infact i am rather lucky with my Limited Wegs.

My moods are all over the shop at the moment, down to 7.5mg of Pred now, didnt think it would affect me at such a low dose, and i havent really had mood swings while i was tapering down, until now.

I've had sinus pain alll week which started over my right eye and slowly went across my forehead. Add into that mix my nose is sore and crusty and my ever worsening post nasal drip.

Thanks for continuing to put up with me!