Flares--how long--how often

[Guest guest]

First off I have not been given a diagnosis at all. January I had a

lot of autoimmune lab and they all came back positive. Raynauds was

really showing it's face when I finally got in to see a rheum. She

did some additional test, which also came back positive. Then, can

you get this, she sent letters to my GP and the lung doctor that had

the test ordered saying she found nothing at all. Raynauds is so bad

at times that the monitor for oxygen doesn't work. And there are

times it is 99%. My sed rate doesn't mean anything because it has

been high 3X normal. Yea right!!

I finally got an apt. with another rheu and that is next week.

beginning week before last I started to feel better. This week has

been the best I have had in a long time.

I often read about flares on this site. I am wondering if there is a

typical time. Is feeling OK for 2 weeks at a time typical or do the

flares come and go on a daily basis? Do the flares typically come and

stay for weeks on end? If next week holds true to this weak this

doctor might also ignore the labs. I hate to say this but I hope

Wed. next week when I see the doctor that I am really bad.

I know this is an individual thing but maybe you can give me some

feedback on this. I appreciate all the insight you can give me. The

labs point more toward scleroderma and/or Lupus but also to RA.

Thanks,

BVan (Betty)

[Guest guest]

Betty, So glad that you are being pro-active and getting a second oppinion....I

don't think there is a typical time for flares, However, it does seem weird that

so many of us are in one. They do come randomly and can last a short time or a

long time..You have good days and bad days...If you are under the care of a

rheumy they can help you with your flares....I sure hope you get the help you

need....Please explain to the new rheumy all of your symptoms...If you have the

time before your appt. write down how you have felt since your symptoms began

and what you are now feeling everyday till your appt.....Go over it with the

rheumy...It's so hard to remember everything and stay focused on all of your

symptoms while your in the middle of your appt....I know I have left appts. only

to remember on the way home something I wanted to discuss...and kicked my self

you know where for not remembering...I have felt poorly for days before my

rheumy appt.. and then on the day of it...I'm

having a good day...go figure...We all have good days, bad days...dealing with

our diseases....Good luck with your appt...Please keep us posted...Hugs

Betty <bvanOmega@...> wrote: First off I have not been given a diagnosis at

all. January I had a

lot of autoimmune lab and they all came back positive. Raynauds was

really showing it's face when I finally got in to see a rheum. She

did some additional test, which also came back positive. Then, can

you get this, she sent letters to my GP and the lung doctor that had

the test ordered saying she found nothing at all. Raynauds is so bad

at times that the monitor for oxygen doesn't work. And there are

times it is 99%. My sed rate doesn't mean anything because it has

been high 3X normal. Yea right!!

I finally got an apt. with another rheu and that is next week.

beginning week before last I started to feel better. This week has

been the best I have had in a long time.

I often read about flares on this site. I am wondering if there is a

typical time. Is feeling OK for 2 weeks at a time typical or do the

flares come and go on a daily basis? Do the flares typically come and

stay for weeks on end? If next week holds true to this weak this

doctor might also ignore the labs. I hate to say this but I hope

Wed. next week when I see the doctor that I am really bad.

I know this is an individual thing but maybe you can give me some

feedback on this. I appreciate all the insight you can give me. The

labs point more toward scleroderma and/or Lupus but also to RA.

Thanks,

BVan (Betty)

[Guest guest]

I don't know if this would help you, but it did in my case. I also

felt frustrated because before my dx, sometimes I would be in SEVERE

pain, with joints extremely swollen, hot and red, and then by the

time I got to a Dr's appointment, the joint would look completly

normal, and all I could say was , " Well, LAST week it hurt! " <g>

I was fortunate in that the docs I was working with took it

seriously anyway. But _I_ was frustrated that they never saw what I

was talking about. So the next time my hands swelled up, I had my

husband take pictures of them with a digital camera. I printed the

photos out, and brought them to my next appointment with me, where,

lo and behold, my hand looked normal again. :-/

The doctor thanked me for taking the pictures, and said that it was

extremely helpful for her to be able to SEE what I was trying to

describe to her. I think I would have gotten the dx of RA with or

without the photos, but she appreciated this added piece of

evidence, and _I_ felt better, because I knew that she could SEE

what I was talking about rather than just trying to interpret my

description.

>

> First off I have not been given a diagnosis at all. January I had

a

> lot of autoimmune lab and they all came back positive. Raynauds

was

> really showing it's face when I finally got in to see a rheum.

She

> did some additional test, which also came back positive. Then,

can

> you get this, she sent letters to my GP and the lung doctor that

had

> the test ordered saying she found nothing at all. Raynauds is so

bad

> at times that the monitor for oxygen doesn't work. And there are

> times it is 99%. My sed rate doesn't mean anything because it has

> been high 3X normal. Yea right!!

>

> I finally got an apt. with another rheu and that is next week.

> beginning week before last I started to feel better. This week

has

> been the best I have had in a long time.

>

> I often read about flares on this site. I am wondering if there

is a

> typical time. Is feeling OK for 2 weeks at a time typical or do

the

> flares come and go on a daily basis? Do the flares typically come

and

> stay for weeks on end? If next week holds true to this weak this

> doctor might also ignore the labs. I hate to say this but I hope

> Wed. next week when I see the doctor that I am really bad.

>

> I know this is an individual thing but maybe you can give me some

> feedback on this. I appreciate all the insight you can give me.

The

> labs point more toward scleroderma and/or Lupus but also to RA.

> Thanks,

>

> BVan (Betty)

>

[Guest guest]

,

Thanks. Someone had suggested I might fax some info and I think that is a good

idea. I intended to call today and ask about faxing, but I let the day slip and

then didn't. Monday is a holiday but my apt. is Wed. I have been trying to get

stuff together and have asked for suggestion. I am still open for any. I have

copies of some lab work, actually more than I want to give as I don't want to

overwhelm them. I will have a list of meds I am on and if I can come up with the

ones that I have taken that have been taken of the market, like Viox. When I saw

the lung doctor he was interested in any previous blood pressure meds.

Symptoms, pain, problems and such is where I have my problems with the doctor. I

really don't like to go in telling them how awful I feel and all that. When I

saw the lung doctor I had no problem with that aspect because I was loosing my

breath, not like when you run and run out of breath but I couldn't breathe. For

a while my husband really shadowed me and I pretty well stayed with him after

one episode that I realized I would be unable to walk from the room I was to

where he was. That time he heard me and came to me. I was about 30 seconds from

calling 911, but if I'm not breathing I don't think they would get here fast

enough. I consoled myself in that my husband can do CPR. But I had no problem

crying to the lung doctor. So maybe I just haven't reached the pain level that

would give me enough to get to that point.

I don't think I handled my apt. with the first rheume and that could be part of

the problem. I really did think the lab would be enough especially since the

problem was very plainly visible. In that light I am really trying to plan for

this apt. and I will have notes.

BVan (Betty)

----- Original Message -----

From: linda yeakel

However, it does seem weird that so many of us are in one. They