RE: (unknown)

[Guest guest]

Hi ....regarding what your doctor told you about stress..... my

doctors also told me that in the very beginning.... I had been under so

much stress way before the disease really kicked in... The day I got out

of the hospital I was told to stop doing anything that upset me and take

one day at a time. Now, I'm just an unemployed marshmallow....<grin>

Thanks for the info...sounds like he's a doctor that is interested in

learning new things. I'm glad you like him.

Take care,

Vicki

[Guest guest]

Dear S.

I have gone throught " the change " , although a little differently. I had an

emergency hysterectomy when was about a week old. I was 31 years old.

What your are experiencing does not sound right to me. My body would

still go through cycles but obviously no bleeding. I would bloat, cramp

etc... all the usual. My lymph nodes would even swell up and my knees and

under my arms would be very sore. What you are describing seems very

extremem to me. Menopause is not painful!!!! You should absolutely see a

Dr. you trust right away. Keep me informed of how you are feeling!

Hugs,

Cari

>From: gide672@...

>Reply-To: OurMyositis

>To: OurMyositis

>Subject: (unknown)

>Date: Tue, 27 Feb 2001 13:37:39 -0000

>

>Hi Connie- great ideas you have! I really can't afford to buy extra

>things right now so love the simple idea- will do it one of these

>days soon.

>After posting re: " female " difficulties, I realized there's no one

>old enough to have gone through the change, except for Ev and Teddi?

>I should probably find an appropo message board to ask these kinds of

>questions......

>Haven't taken Vioxx for 2-3 days now, and I sure am noticing the

>difference, discomfort wise. Problem might be that I wont be able to

>afford the Vioxx for long as my co-pay for that has gone up to 30

>bucks, especially when I add all the other drugs in. Am just going to

>have to experiment and cut out what may not do much for me.

>Off to eye doctor soon- will find out more about my " lazy " eye. All

>ahve a good morning.

>Deneen- will keep praying and " holding you up " in your battles. Get

>enough rest! Anythingl your doc recommends to help the hand rash? Try

>atarax for itching ( prescription antihistamine that has done wonders

>for me for years.) Love S.

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

<<<After posting re: " female " difficulties, I realized there's no one

old enough to have gone through the change, except for Ev and Teddi? >>>

Yes, and it's been so long ago I don't

remember......of course sometimes I can't

remember yesterday......LOL

Teddi

mailto:teddifromok@...

[Guest guest]

.... I guess that lets you out for the GOOD DRIVING discount for

the year...lol It just goes to show you what all those doctors appts.

can do to an individual.

Hope your feeling better today...

Vicki

Helpful Links Info

[Guest guest]

... Did you get your blood work back yesterday? If so, what was

the outcome?

Vicki

Helpful Links Info

[Guest guest]

>

>

> ... Did you get your blood work back yesterday? If so, what

was

> the outcome?

>

Not yet Vicki. Their phones were down yesterday. Maybe I'll try now-

thanks for reminding me!! J.

[Guest guest]

... when and if your doctor does call, ask him to mail you a copy

of the report. He'll do it....you just need to ask him. I've set up a

binder for my medical records and when my lab tests come in, I'm mailed

the results as well as a phone call if something is elevated. My binder

is getting big!

...there is nothing worse than the unknown. Not knowing why you

feel bad is very frustrating. Keep after the doctor until you get your

questions answered.

I don't know if you've tried this antidepressant or not. I tried some

of the others ones but they made me so darn tired all the time. I was

put on Effexor XR 75mg. I don't take it all the time. Only when I need

to get a good nights rest. But I have taken it like 3 or 4 days in a

row and it gave me a very good nights rest but didn't give me that

dragged out feeling the next day.

I think Mike is sitting outside waiting for the groundhog to show his

little face and cast that shadow so he can celebrate.

Take care,

Vicki

Helpful Links Info

[Guest guest]

and all

I have not heard anything about cancer and myositis either. In my case though,

it could be Freak and his lack of communication skills. I am very interested in

hearing more about this. Anyone with info please let me know. Thank you !!

[Guest guest]

Hi ,

Check out the following link entitled Malignancy and Rheumatic Disease http://www.moffitt.usf.edu/pubs/ccj/v4n3/article5.html

(It took my computer a bit longer than normal to load, and it's fairly technical, but still, worthwhile.)

As for me, this article illustrates another reason why I'm glad that I have not gone the prednisone, methotrexate...etc. route of suppressing the immune system and instead, have chosen to build it up and treat the myositis with antibiotics. The article mentions the possibility that the standard treatment of suppressing the immune system in rheumatic diseases, is perhaps a cause for the cancers. Often times, cancers are opportunistic in finding immune systems that are less than healthy.

Anyway, there is still a lot to be learned....for sure!

Connie

Re: (unknown)

and allI have not heard anything about cancer and myositis either. In my case though, it could be Freak and his lack of communication skills. I am very interested in hearing more about this. Anyone with info please let me know. Thank you !!

[Guest guest]

... on Connie's post are you referring to the whole post that you

can't open or just the web sites?

Vicki

Helpful Links Info

[Guest guest]

I was wondering Connie if it was your whole post...in which case I can't

help her. If it's the web site's you list...I can help her. Dealing

with AOL the web site's have to start with <a href= " http://www .web

address " >click here</a>

Just one thought as to the problem.

Vicki

Helpful Links Info

[Guest guest]

Oh Connie...we had such a beautiful day. The temp was 71° today. I

loved it. Went outside for a walk and then did some gardening or I

should say clean up.

Hey, I know about the tumbleweeds. As a kid living in Vegas...we use

to gather them up and spray paint them for our snow man in the front

yard. Some of them were huge.

Vicki

Helpful Links Info

[Guest guest]

I was wondering that same thing....is anyone else having similar problems?? Maybe I need to run my virus checker?? I hope I don't have a virus!

take care,

Connie

Re: (unknown)

... on Connie's post are you referring to the whole post that youcan't open or just the web sites?Vicki

[Guest guest]

Hi ,

I wish we could download some energy to you..... just know that you're having a temporary energy crisis....and they're no fun! I wish doctors would at least tell their patients what they are thinking.......or what they think is going on. They're probably all so reluctant for many reasons....and litigation is definitely one of them. They're probably taught in med school to say the least they can get away with....and they have time constraints to deal with, too.

Anyway....whenever you feel like pursuing more doctors, diagnoses, and drugs?.....nah, it was just a "d" word :-) and if you're still interested in the antibiotic protocol, there are other places to turn. Not only rheumys, internists, and family practitioners are capable of prescribing the AP, but often times Environmental Physicians and physicians who are members of ACAM - the American College of Advancement in Medicine are willing to take more time and find the cause of diseases....in addition to doing mycoplasma/parasite studies.

Don't give up, lady! Set your mind on getting better.....and you can bet we will encourage all the way to no more cigs!! Besides, if we ever met....I couldn't even give you a big hug without coughing up a storm, just from a cig you might have had an hour before.....so, stop stop stop OK? :-) I just might pop in someday! Have you tried that gum....what's it called, Nicorette? My nephew has recently quit and he's chewing the Nicorette. He buys the more potent variety and then cuts them in smaller pieces, because it's cheaper that way :-)

If you need any of my recent posts, I can cut and paste the article for you....let me know if there's anything I can do, OK?

hugs to you!

Connie

(unknown)

Hi Vicki and all-Yeah, I could get pushy I suppose. Just have to get that energy back. I can understand that, based on physcical exam, basic neurological exam, and blood tests, why most doctors would say "there's nothing much wrong with you." Now I realize I should have gone to this guy a few months ago, when I was having more muscle fatigue- least, it sure seemed I was in a flare of some type or other. The doctors I've gone to in Albany are affiliated with Albany Medical Center, a very good medical college/teaching center. it keeps getting bigger and better. I know of no other place, besides perhaps in NYC, where I could get experienced doctors. The rheumatologist I did see does have experience with myositis.But, I'm open, for sure. I live half-way between NYC and Albany, NY. We have insurance, it just has it's limitations. We have a choice of only 2 rheumatologists within decent driving distance listed on our plan. There is one, I think, in Beacon NY- a bit more of a hike, and it's another rheumatology office that I nkow nothing about. We can go to any doctor, anyplace, but of course if it's not listed in our plan, we have to pay a goodly amount more and we simply can't afford to do that now. I'd be willing to go see someone who might do AP, Connie, though it looks as if I need no real treatment right now. But, I feel a doctor who will prescribe that MIGHT be more willing to answer questions and do further investigation, if he/she feels it's warranted. Of course, if any symptoms get worse, I for sure will call a doctor. The rheumy I saw is fully aware raynaud's can be a secondary disease. He did not however, seem too concerned about it. I can't say he treated me at all badly while I was there- it's just the follow-up! :(BTW- every time I click on Connie's posts today, my computer shuts down AOL. The others seem OK, so, I havent' been able to read your last 2-3 posts, Connie. Darn. Love --- OH- at teh moment I am smoke free and have the patch on. Had my last cig a few hours ago. Feel OK, but it's way early in the game. I ahve to say, though, that at least at present, something seemed to "click" with me, so am hoping this is the time. Encouragement welcome !

[Guest guest]

I don't know, Vicki......my computer skills are limited :-)

Hope you are having a good evening and things are starting to dry out. We had a BIG windstorm today.....and when the wind blows, the dirt will rock! The skies were brown and so full of dust! Guess what all you Easterners? News Bulletin here.....tumbleweeds are for real! They don't just exist in cartoons.....they're right here with me, no kidding!

take care and hugs to all,

Connie

Re: (unknown)

I was wondering Connie if it was your whole post...in which case I can'thelp her. If it's the web site's you list...I can help her. Dealingwith AOL the web site's have to start with <a href="http://www .webaddress">click here</a>Just one thought as to the problem.Vicki

[Guest guest]

Connie

Where are you and the tumbleweeds located?

We see lots of them here in Oklahoma......

also the wind and dust......LOL

Teddi

mailto:teddifromok@...

[Guest guest]

Hi Teddi :-)

Me and the tumbleweeds live in the dry, deserty, eastern side of Washington state....Richland, WA, almost down to the Oregon border. When my daughter first arrived at her dorm at the U of Portland (Oregon), she met a city girl from New York.....who thought tumble weeds existed only in cartoons LOL Boy do we have something to show her!

Yep, Vicki....I would assume that eastern WA tumbleweeds are pretty similar to Las Vegas ones :-) Their beauty really does grow on you, after a while :-)

Take care everyone,

Connie

Re: (unknown)

ConnieWhere are you and the tumbleweeds located?We see lots of them here in Oklahoma......also the wind and dust......LOLTeddimailto:teddifromok@...

[Guest guest]

Hi

Tiger is on liquid.....one dropper full daily

......as far as his kidneys.....he is 12 yrs old

and walked stiff, threw up and was in pain

.........the pred has helped this....so I'm going

for the quality time............it's good to see

him not hurting....and the vet will be

checking him regularly.

Teddi

mailto:teddifromok@...

[Guest guest]

The give away to my diagnosis was my elevated CPK. And, Ill note that even on the pred. and the meth., the lowest it has been since diagnosis is 260.

The normal range, per my lab, is between 70-120. At my worst it was 1600.

Im no doctor, but it seems to me that if Freak cannot get it any lower and I dont feel any better, then the meds he has me on apparently arent doing the trick and other avenues should be looked at. Not in his opinion though. He says they are working and the only reason I feel so bad is because I have developed steroid myopathy and neuropathy from the drugs. WHATEVER !!!!!!!!! All I know is I feel so weak and my neck and knees especially are hurting so bad I want to just curl up in a ball and die. All this and trying to work is not doing much for my mental state either !!! Sorry but had to vent !!!

My cats knead me !!!!

[Guest guest]

Well ever since I returned to work my numbers are increasing and that is what scares me. Freak doesnt seem to be concerned but I am. Then again, I think the only thing he is concerned with is whether or not his camels are placing in the most recent race !!! That is no lie, he is actually an avid camel racing fan and goes to his country twice a year for the races.

My cats knead me !!!!

[Guest guest]

Hi everyone,

I'm sorry, I can't be of any help to you--I had a complete Hysterectomy, in

1975. I did have those same symptoms before the operation though!!

Ev---IBM

[Guest guest]

Good Morning Everyone....

Hi .... Yes, I did go to the doctor and I'm in a flare.... Ooooh

how I love to sleep my life away. Just when I think I'm ready to get up

and move around, I soon find out that I'm not. It's just going to take

time.

Usually it lasts for about two weeks. I should start to see some

improvement in a few days.

... I don't have the SS antibodies but I do have the symptoms of

Sjogrens disease, although mild....more annoying than anything else. I

have not read about the bending of the fingers....something for me to

find out though.

Hope everyone else is doing well. Spring has arrived and today it's

already in the mid 70°'s.... going to be hot today.

Take care,

Vicki

[Guest guest]

Wow, ! You really do have everything sorted out.....we just have to find you a compassionate doctor! I see your fight is back, too, and that is wonderful!!

Thinking of you,

Connie

[Guest guest]

I learn most of my stuff the hard way. I think they call it the land

of hard knocks! I can't tell you how much happier I am now. I don't

have a hubby that walks all over me ( no guys, I don't think all men are

like that! :~) ) and I don't have anymore friends doing the same. Such

a blessing.

I went camera hunting for a friend of mine and I found the camera she

wanted about $50.00 cheaper...she was thrilled. She's going to come

up in a couple of weeks to help me go through my storage units...it's

swap meet time and she's really great at it. Gosh, I've got tons of

junk. Today I've been going through my horse gear that I can no longer

use....saddles and such. I'm going to Australia even if I have to swim

there.... and all this junk will help me get there and spend some money

on my girls.

Boy, I really hope I have enough notches so that God will let me in

animal kingdom. I've got some very special kids waiting for me.

I hear ya about the baby sitting.... I've seen some pretty bad kids out

there and if I were to watch someones child, you can bet I would end up

with The Bad Seed....!!!

Hope you had a good day

Vicki

[Guest guest]

I love unconditional people toooooooooo !!!! And if I didnt wear makeup I would cause many an accident and scare the heck out of many people !!!!

Ann-Marie, are you in full habit more so than not ??? Another naive person here !!!

My cats knead me !!!!