Not Bechet's: I just finished my first round of... - Behçet's UK

Behçet's UK

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Not Bechet's

Brichel profile image
6 Replies

I just finished my first round of iv infusion for low igg levels. Constant bronchitis and UTI infections. My rheumatologist told me it's not the Bechet's. I was told by the hemotologist that it is not uncommon to have a secondary autoimmune disease. So it's back to the rheumatologist to figure out what it might be. Lupus seems to be the main character. Will keep you all posted.

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Brichel
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6 Replies
Minnskimoo profile image
Minnskimoo

Hi Brichel.

Sorry to hear there is a possibility of you having another autoimmune condition. Not the best news, but if it is of any consolation, I appear to be in the same boat right now. I have been experiencing many symptoms alongside the Behcet's for quite some time. The Oral consultant said aside from the manifestations within the mouth and genital region the myriad of symptoms do appear to overlap with a few other autoimmune conditions - but cannot pinpoint exactly what! Needless to say, I am now back to the rheumatologist - last seen April of 2017 with the thought I might have Lupus, MCTD or Vasculitis. Well the vasculitis part was correct, for sure. So, it rolls on.

Very difficult to know which symptom is part of the Bechet's or something else.

Do hope you find an answer soon. And certainly picking up from your bout of bronchitis and UTI's.

Take care.

x

Brichel profile image
Brichel in reply toMinnskimoo

Thanks. Today was the first time my rheumatologist made me feel he was patronising me. He is having me tested for Lupus but I felt he wasn't listening to what I was saying. I felt like I was being humored. Not good as it took me sixteen years of doctors eye rolling till they found my Bechet's and then it was a lung specialist.

Do you feel like you're going to fall over from dizziness and muscles hurt l I me you over exercised? Man, this sucks!

Minnskimoo profile image
Minnskimoo in reply toBrichel

Goodness -16 years! What a long time.

And yes, I constantly feel dizzy and In a drunken like state.

I like to do a spot of gardening but afterwards my poor arms, I am unable to lift them for quite a few days.

Yes, it most certainly does ‘suck’

Wondering if they might consider, Wegener’s. It’s another type of vasculitis characterized with respiratory issues and kidney issues.... just a thought..

Brichel profile image
Brichel in reply toLovingdragonflies

Will check it out. Thank you.

Brichel profile image
Brichel in reply toBrichel

By the way, I love dragonflies. I go outside and sit(live in the country) and they land all over me.

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