Re: Flares--how long--how often Betty

[Guest guest]

Hi Betty:

That is a really hard question to answer because

everybody is different, and every flare, at least for

me, is different, and affects different joints,

although most of the time it is my feet, elbows, hips

and hands, but not necessarily in that order lol. I

think that whatever you are feeling is absolutely

normal for you right at this time. That is not saying

that next week will be as good, you could be flaring

again, it just cannot be timed or willed, as in the

case of seeing the doctor and actually feeling good on

that day. Believe me, I have been there, and too

wished that there was something that the doctor could

see! But there is no reason for the doctors to not

take notice of the lab results, even if you are having

a good day, if they are good rheumys who understand

the nature of flares.

Ask for copies of your lab work, and that way, if

there is a problem with what one doctor writes to

another involving lab work, you have the copies.

There in no lab work for raynaud's that I know, I just

know that my doctor has talked to me about my symptoms

and diagnosed from there, and sometimes my hands are

very cold and white with purple when I go in, so she

sees it. Can't will this stuff to show up on demand,

or go away on demand, for that matter. Now that I

would enjoy. Go away, dang it, I want to do such and

such today! Poof, it's gone, and we can have some

fun.

Ah dreaming again.

I am sure that the new rheumys will probably want to

run their own labs, and if you have an autoimmune

disease the labs should point to it. They should, but

there is always the chance that you also have a

seronegative RA say, that does not show up as positive

RF factor. It can get very confusing. Have you had

positive ANA? That, I believe, would tend to point

more toward lupus or scleroderma. I am sure a or

would have more information on tests in general.

Write down everything before you get to this new

doctor - everything you can about your flares, where

is the pain, how long does it last, is there any

redness or swelling, how about limitation of movement,

fatigue, just feeling downright sick, all of it.

Also, any questions that you want to ask him - write

it down so you remember to ask. Each new doctor is

like being dx all over again - just be honest and

don't try to sugarcoat anything, be real with your

pain, and what you go through.

I wish you the best of luck - let us know how it goes

-

Kathe in CA

__________________________________________________

[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. That lasted a couple weeks and has not reappeared. 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.

Betty

Re: [ ] Flares--how long--how often Betty

Hi Betty:

That is a really hard question to answer because

everybody is different, and every flare, at least for

wished that there was something that the doctor could

see! But there is no reason for the doctors to not

take notice of the lab results, even if you are having

a good day, if they are good rheumys who understand

the nature of flares.

Ask for copies of your lab work, and that way, if

there is a problem with what one doctor writes to