Re: Hi all

[Guest guest]

,

Welcome! Yes, your stomach and throat can be affected, as well as your lungs. A major complaint in myositis is difficulty swallowing and a lot of us have stomach problems, lung problems, etc.... You have been sick for some time now. That has to be frustrating not knowing. Hope you find out soon. It is a great relief to have answers.

My name is Zanna. I am 33. I was dx. 3 years ago with PM.

This is a great group and very informative, and a lot of times a little wacky, but always uplifting. Enjoy your stay.

Zanna

[Guest guest]

Hi ,

We all either have or are now, experiencing the maddening waiting

game. I'm still waiting for a dx myself. I have learned about about

myositis from the members in this group. A LOT! We have a good deal

of fun here too. Poking, joking, etc. It's good for our minds and

morale LOL! So just jump right in. Welcome! *da plane da plane*

Ed from Florida

> This sure seems to e a very avtive group. I am still waiting news

if

> I have myositis of some type. I am having a lot of weakness. I

> already have UCTD and other problems, really don;t need any more.

But

> iam glad i found this group. I am waiting for my muscle biopsy to

get

> set up. The dr. is waiting for results on my MRI's. Sometimes it

> feels like one big waiting game. I may have overlap with another

> illness. MY stomach muscles and esophgus don't work well anymore so

> they were looking at SD and other things taht affect that. I have

> lost a lot of weight. Can myositis affect the muscles in these

areas

> too? If yes then maybe all this is due to just one thing. But who

> knows in dec. I had fluid in my lungs and was in hospita; for four

> days not fun. They never did find out from what. I guess now I just

> have to wait. I finally found a good rheumy and he is the one

finding

> all this stuff out. I have been sick since 1995, but the muscles

have

> never been this bad. Sorry for this being so long, never starts out

> that way.

> Thank you all H

[Guest guest]

Hi and welcome to our group! Never apologize for posting a long

message...yours isn't as long as some of us send (especially when we're in

one of our " ranting and raging " phases, which we all resort to at one time

or another). You're right about the diagnostic time being a waiting game.

We've all gone through that, and some of us are still right in the middle of

that phase. None of it's easy...the waiting, the weakness, the not knowing,

and all the various symptoms these diseases are famous for...but this group

makes it seem easier. Maybe it's just misery loves company at times, but

then again it's sometimes just us venting steam with people who have been

there! So important. Plus, you can't beat the entertainment value of this

group. Also so important! Keep us posted. Oh! Forgot to mention I have

DM, was diagnosed almost ten years ago, and still need encouragement now and

then from people. Talk soon! Annette

hi all

This sure seems to e a very avtive group. I am still waiting news if

I have myositis of some type. I am having a lot of weakness. I

already have UCTD and other problems, really don;t need any more. But

iam glad i found this group. I am waiting for my muscle biopsy to get

set up. The dr. is waiting for results on my MRI's. Sometimes it

feels like one big waiting game. I may have overlap with another

illness. MY stomach muscles and esophgus don't work well anymore so

they were looking at SD and other things taht affect that. I have

lost a lot of weight. Can myositis affect the muscles in these areas

too? If yes then maybe all this is due to just one thing. But who

knows in dec. I had fluid in my lungs and was in hospita; for four

days not fun. They never did find out from what. I guess now I just

have to wait. I finally found a good rheumy and he is the one finding

all this stuff out. I have been sick since 1995, but the muscles have

never been this bad. Sorry for this being so long, never starts out

that way.

Thank you all H

[Guest guest]

Hi ,

Welcome to our little group. My son, , is 6 years old and was

diagnosed 3 years ago with Juvenile Dermatomyositis. He is currently doing

very, very well and is off all meds. He was mis-diagnosed at first, which

is common, but after a muscle biopsy and a correct diagnosis he was treated

for the JDM and is doing great! You have come to the right place for

answers and support.

Looking forward to getting to know you.

Cari

>

>Reply-To: OurMyositis

>To: OurMyositis

>Subject: Re: hi all

>Date: Wed, 13 Mar 2002 14:44:05 -0000

>

>Hi ,

>

>We all either have or are now, experiencing the maddening waiting

>game. I'm still waiting for a dx myself. I have learned about about

>myositis from the members in this group. A LOT! We have a good deal

>of fun here too. Poking, joking, etc. It's good for our minds and

>morale LOL! So just jump right in. Welcome! *da plane da plane*

>

>Ed from Florida

>

>

> > This sure seems to e a very avtive group. I am still waiting news

>if

> > I have myositis of some type. I am having a lot of weakness. I

> > already have UCTD and other problems, really don;t need any more.

>But

> > iam glad i found this group. I am waiting for my muscle biopsy to

>get

> > set up. The dr. is waiting for results on my MRI's. Sometimes it

> > feels like one big waiting game. I may have overlap with another

> > illness. MY stomach muscles and esophgus don't work well anymore so

> > they were looking at SD and other things taht affect that. I have

> > lost a lot of weight. Can myositis affect the muscles in these

>areas

> > too? If yes then maybe all this is due to just one thing. But who

> > knows in dec. I had fluid in my lungs and was in hospita; for four

> > days not fun. They never did find out from what. I guess now I just

> > have to wait. I finally found a good rheumy and he is the one

>finding

> > all this stuff out. I have been sick since 1995, but the muscles

>have

> > never been this bad. Sorry for this being so long, never starts out

> > that way.

> > Thank you all H

>

_________________________________________________________________

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[Guest guest]

Hi

Welcome to the group.....we are like a big

family. If you have questions Vicki is Queen

of Research and can find info on ANYTHING.

There are several people here like you who

are waiting to find out just what the heck they

have. From a " been there done that " I think

this period is so frustrating and scary so this

is great place to howl, moan, rant & snivel,

that's what we're here for. You are fortunate

to have a good rheumy.....so many don't.

Again welcome.

Teddi

mailto:teddifromok@...

[Guest guest]

Hi ,

I understand how you feel as well. I keep repeating if only to myself. This board has been a lifesaver to me. My GYN still insists that nothing is wrong. That is just scary!!!! I guess we have to be our own advocate's but how luck we are to have all thses wonderful women helping us along the way. You are not alone and eventually we will all have our answers . WAITING IS THE HARDEST PART!!!!. Try to be positive I know its hard because I constantly tell myself the same thing!!

Kristi

hrrhnurse wrote:

Sorry that I haven't been too communicative lately but lots has been going on and unfortunately not too much has been positive. I am patiently waiting for my period as my GP instructed. Stopped the BCP on September 11th and so far nothing. In the past, 4 days after I stopped the BCP, my period started of course this was pre D and C. Every morning I wake up and I pray that today it will come. How ridiculous is that? I know in my heart of hearts, things will not just right themselves on their own but I can't help but hold on to that little bit of hope that maybe nothing serious is wrong it's just that "the pill" was too strong for me. How stupid!!!!!I called Dr. Palter's office today and left a message about booking a consultation with him. So far haven't heard back. I have no idea how in the world I will be able to pay for any of this, and also get time off work to go, the plane fares, hotel bills etc etc. in the almighty American Dollar which compared to my poor Canadian Dollar it's almost 2 to 1. Finally, the worst part is, my boyfriend is getting impatient. I so want to have a baby, I mean really really badly, and I think I am even more obsessed now. Although I have not been TTC as I think that would not be advisable until I know what is going on, it's all I can think about. I am so depressed about what happened to me and I can't help but think that my one and only chance at a family ended in March when I had that D and C. The other thing that plays heavily on my mind is that my boyfriend didn't know that I was pregnant at all, I guess because it was an accident and I just had this intuition that something was not right from the beginning I didn't have the courage to tell him. Besides it was an accident and completely unplanned. So he is totally unaware of what is going on from the D and C and the AS which makes him not all that involved in my panic, guilt etc. Most of all, I am really really saddened by everything going on. Now I am sure that it has affected our relationship and well......Sorry to ramble on and on, it's just that I honestly feel hopeless and true despair like I have never known. I just don't know how to cope and I feel as though there is so little hope! Worst of all, nobody in the medical community wants to listen or seems all that concerned. I am so greatful for this group. It has been a great source of information and advice for me and has gotten me through the past while. So for that, I am thankful. Aren't some of the saddest words in the english language IF only....Take care all and for those going through both difficult times, and joyous times, my thoughts and prayers are with you. F.

[Guest guest]

,

I felt very bad for you when read your message and wish that I could

reach out and give you a hug. I also understood a lot of what you are

going through. When I became pregnant for the first time, I wasn't

married. (We are married now) It was not planned but I was so excited

to be pregnant. When he found out that I was pregnant he was very

upset. When I had my miscarriage he didn't feel the sense of loss or

grieve the way I did. I remember how alone I felt and and also

resentful that he seemed relieved. It wasn't until years later that I

told him how much it hurt and then he was very understanding. Do you

think it would help to talk to your boyfriend and tell him what you

are going through? You are also doing the right thing by calling an A

list doctor. I hope you are able to find a way financially to see

him. I will keep you in my prayers and please know that even though

you feel so alone you are not. Please keep in touch and let us know

how things are going. I hope they get better for you.

Take Care,

Roxie

[Guest guest]

((()))

My heart goes out to you after reading your message.

I want you to know that the waiting was for me, the absolute worst part of this.

Once I had a diagnosis, I felt I could begin to heal and hopefully move on.

I hope you can get to the US.

Maybe you could have your initial consult and HSG in Canada by an experienced RE

and then take the results

here? It may be that if you do have AS, it is mild and could be treated where

you are. I was lucky that my

scarring was limited to the base of my cervix. I hope that is the case with you

as well.

I really do believe you will get more support from your bf if you let him know

what is going on.

My relationship with my DH only got stronger from this. We both have a dream to

one day be parents.

It is really hard to not obsess about getting pg. You are not alone in that.

This can be treated. Try to stay

optimistic. I know it is really hard to do sometimes.

I hope you have some answers soon.

[Guest guest]

I really sympathize with you over this. I unexpectedly got pregnant

the first month after I was married at 42. Having to deal with all

of this at my age is really difficult because of the age issues in

addition to the medical situation makes the time it takes to correct

the problems very very scary.

I've been pretty fearful of burdening my husband with too much of

it, although he's been pretty good. It has seemed to me that having

a wife who miscarries, gets horrible complications, gets cancer,

gets more horrible complications, all within the first 3 years of

marriage is a lot for a husband to take. It would be horrible to

lose the pregnancy, lose my fertility, and lose my husband. So I

understand your fears about bringing him into this. But, carrying

around the burden you are without letting your boyfriend know

something of what's going on could drive a wedge between you. Will

your insurance cover some counseling? That has been a godsend for

me and I think my having that source of support is one of the

reasons my marriage is doing well through all of this. You can talk

through with someone how to approach this with him, and see someone

together as a couple if necessary.

In terms of time and treatment issues. It's really hard. But, I

try to tell myself that preserving and supporting my organ systems

and my body is the right thing to do. I believe that with all my

heart. I don't know that it will result in pregnancy, but so long

as my ovaries want to make eggs and my uterus wants to put forth a

period, I will do my best to support them in their life's work so to

speak.

It has been a bit like walking over a tightrope or on a cliff edge.

When I got married, I figured my chances of pregnancy at my age were

~10% (although maybe its higher with all the fancy treatments they

have now). With the cancer, the doctor gave me a 50% chance of cure

with hormones. With the second bout of Ashermans the doctor told me

a 50% chance he would be able to get the uterus open at all. I

don't know that I will ever get pregnant again, but so far I have

beat some pretty long odds. And even if I don't, having that

possibility is a good thing between a husband and a wife. So, I

say, go for all the treatment you can without endangering yourself

and take it one step at a time. You do not know what the future

might hold with treatment, but you have a pretty good guess of what

it holds without treatment.

Helenmarie