How to know when you're having a flare

[moyan]

Hi, I too, have been living in a vacuum rergarding the disease, but thanks to Andrew and all the talk here I am so much more educated now. An in-ternist in Canada is a specialist on diseases in your tummy, intestines etc. I trust mine to know about my kidneys, but ENT, Rheumy and others are needed also. Have one for lungs. Good luck to you in finding out more. Moyan

[Sangye]

Moyan, do you have kidney involvement? If so, you should also have a nephrologist on your team. If not, the rheumy can work with your internist to keep an eye on your kidneys.

Internists are the same here in the US. But there are still GI specialists, nephrologists, pulmonologists, etc....

[moyan]

Yes I do, but he is on top of that, seems to be his main area. Moyan

[Natalie]

Ok Well I had aching legs last night and this morning my ears changed pitch . I have never thought of the aching legs as a sign of a flare until i Found this forum a week ago . My tell tail signs are severe headaches and deafness a . These are big signs .. but have never listened to my body for the little signs . I just thought all these crazy little thngs happening to me were just normal .
The issue with my Boob may just be WG related ?

[sharon]

Hello nat
Ii can't remember if you are on pred, i have found when i have over done it, my legs ache and also i get like restless legs, i always thought it was from the pred but from what i have read here it may well be wg, its seems a lot of us have problems with our legs. With your other problem, it could be wg but remember our treatment leaves exposed to a whole range of infections that would normally not bother us. Hope u r feeling a bit better today.

[Natalie]

true Sharon. Might be reading to much into it ,, come on lab tests ! .. I always think the worst then work my way back from there lol.

[Sangye]

Natalie, one of the most important things I've learned about Wegs is that you can't rely on lab tests alone to tell what's going on. The Wegs specialists rely heavily on signs and symptoms, which often show Wegs building before the lab tests go out of range. (Apparently Wegs read the lab book and knows how to cheat the exam....)

If your boob wound is Wegs it's harder to treat than infection. The only way they'll be able to tell is to biopsy the tissue. It's a very simple procedure-- just numb a small area in the office and take a tiny piece. They often do 2 or 3 biopsies at once.

[Natalie]

ok thank you for the info again Sangye .. just a bit freaked but i will get there

[elephant]

Natalie, I know how you feel. I think I had a month of freakiness....then it subsides. I had a breast biopsy 15 years ago, it was not bad at all. You will do great.

[Sangye]

If there's an open wound it's not the same as having a breast biopsy. It's much easier! They numb the area and then use a little tool to cut a tiny piece (2 to 3mm) of the wound. The only thing you feel is the tiny injection of the lidocaine in the beginning, but it's not that bad--very small needle. The biopsy is so tiny it only requires one stitch to close it. It isn't very deep, either. I was pretty freaked out the first time I had a wound biopsy--the leg ulcers I had were already excruciating and I couldn't imagine doing anything more painful to them. But it's really nothing.

I've freaked out so many times with Wegs I wish someone would pay me for doing it. My Arizona therapist would tell me, "It's okay, let's just reel it back in now." I love that. It always calms me down and I realize I have the power to control where my mind goes. Hang in there, Natalie. You'll be okay.