Many of us are Heading toward remission

[Lightwarrior]

I made a table based on Sangyes system to help me track symptoms, I changed thumb and first finger for shortness of breath since that is more of a problem for me. I hope I can attach, not sure how so my cut and paste may work. Here goes. Okay the cut and paste worked, now can I attach? I figured it out but I think the table thing makes the file to large, it exceeds limits. You can probably cut and past this on to a blank work document, if you find this format helpful.

Wegeners Scoring

0=none 10=worst possible

Date:________to________

Symptoms

Scores

Sun

Mon

Tues

Wed

Thur

Fri

Sat

Joint pain outright
Joint pain following activity
Joint pain at night
General stiffness
Shortness of breath
Fatigue unimproved by resting
Extreme fatigue/weakness
Low grade fever
Sweats
Blood streaks from nose
Vasculitis rash
Insomnia
Fluid in ear

TOTAL

Wegeners Scoring

0=none 10=worst possible

Date:________to________

Symptoms

Scores

Sun

Mon

Tues

Wed

Thur

Fri

Sat

Joint pain outright
Joint pain following activity
Joint pain at night
General stiffness
Shortness of breath
Fatigue unimproved by resting
Extreme fatigue/weakness
Low grade fever
Sweats
Blood streaks from nose
Vasculitis rash
Insomnia
Fluid in ear

TOTAL

[elephant]

This is great LIghtwarrior! My confusion is if I have three of the symptoms out of the 13 listed (of course everyone is different) does that mean I am going into a flare? This is where I start to get anxious and wonder what many of us go through ( infection vs viral vs WG flare vs side effects to meds vs permanent damage).
thanks so much for this

[Lightwarrior]

I think it would depend on how severe the symptoms are. i.e. three symptoms rated under 5 vs three symptoms rated over 5. Are the symptoms consistent? Every day are they present and are either staying the same score or increasing in score? I suspect from all of the posts and my new experience that most of us will rarely be "symptom free". But with Sangyes system we can figure out what is the "new normal" vs need to seek help. (Remembering that Jack is right and we have to not let denial take over). Side note we all have to remember that "de nile" is not a river in Egypt it is denial and can be dangerous for us LOL (Yes i have an odd sense of humor, I think it is a nursing thing)

[elephant]

Can we add Crabbiness to the "Wegener's Scoring System" ? I feel that when I start to get a symptom like for example my ears are feeling fuller than usual I get a little crabby. I think it has to do with no control over this stupid disease and the frustration of " Now What' or "What next" ??

[Lightwarrior]

LOL elephant, definetly add crabbiness, yesterday I was a 10 today more like a 3 :-) Most likely crabiness is directly related to symptoms.

[moyan]

Hi. Every morning when I wake up I ask the disease "Where are you gonna be today"?

[Sangye]

LOL-- this is great, Lightwarrior!

When you're making your list, you've gotta put your own symptoms unless the ones I listed are the same way Wegs presents for you. Blood streaks are a big indicator for me, since I wouldn't normally have even tiny amounts of blood. For someone with major nose involvement, blood streaks might be present during remission.

Elephant, first score yourself in remission--that's your baseline. (You might have to create a baseline score by reflecting on how you felt a few months ago.) Then score yourself each day for a week or so. If it's not clear to you whether it's an early flare or just a temporary wobble, share it with your doc (include the baseline score).

[elephant]

Thanks Sangye, I am hoping for some answers by the end of the week.

[Sangye]

I hope it'll be okay. It's so stressful and frightening to wonder.

[Brooke]

Nice system. Does everybody have or once had joint symptoms? I do not have any joint problems, never have thankfully. Only sinsus, upper airway, lung, and fluid in ears.