New OurMyositis member

[Guest guest]

Hello Everyone

I would like to take this time to WELCOME our newest member,

catzmeowz@..., to the list. My name is Vicki and we have a

wonderful bunch of people here so when you feel comfortable, please tell

us a little bit about yourself. We hope you enjoy your stay.

[Guest guest]

hi jim my name Adannia and iam 17 yrs old i have DM i was diagnose about 2

1/2 yrs ago and since then it has not been easy, i have been through so much

problably more than a person who's 70 or some thing.

please tell me a little bit about your self i will like to get to know

everyone in this group some of these people i have lost contact with.

Adannia

[Guest guest]

its someone going to write a book? i will love to participate if a could,

just let me know.

thank you

luna( Adannia)

[Guest guest]

Hi Adannia... haven't heard from you in a while so I was hoping your

feeling better and out running around. Jim is putting together a book

on myositis. He's ask all of us to submit our stories. This would be

good for you since your so young. You'll be able to give some insight

as to how you first felt when you got the disease and how you feel now

.... Hope you had a great day. Take care,

Vicki

[Guest guest]

Please WELCOME our newest member, faerytails@..., to the

list. My name is Vicki, list owner, and when you feel comfortable

please tell us a little bit about yourself. We have a lot of

wonderful, caring people here so we hope you enjoy your stay.

Vicki-PM

[Guest guest]

Welcome faerytails@... ,

My name is karen and I am 36, diagnosed with dermatomyositis over 5 years ago and really appreciate this list and the support it gives. I hope you will enjoy it here as well.

Fill us in about yourself when you feel ready.

karen

dm

www.yorkieland.homestead.com/index.html

..

[Guest guest]

Good Morning Everyone....

I would like to take this time to WELCOME our newest member,

ejspess@..., to our list. When you feel comfortable please tell us

a little bit about yourself. We have a wonderful bunch of caring people

here so welcome to the group and I hope you enjoy your stay...

Vicki-PM

[Guest guest]

I'm a bit late, but welcome chesterascal@...

You will love this group! They are very informative and comforting. It is so wonderful to be able to 'talk' here where people understand you and what you are going through.

Again, Welcome!

=

karen

dm

Re: New OurMyositis member

I would like to take this time to WELCOME our newest member,chesterascal@..., to the list. When you feel comfortable pleasetell us a little bit about yourself. We have a great bunch of peoplehere so feel free to jump right in. My name is Vicki, list owner, andI hope you enjoy your stay.

..

[Guest guest]

Hi Chester,

We all welcome into our wonderful world of information. I see I already made

a mistake--left out the word " you " Thats another, our group looks over

mistakes, so don,t worry about that. I,m probably the eldest of the

group--not making excuses, just a fact!! I,m 76, have IBM, and at first was

diagnosed with Polymyositis, then in Jan. 1996, I had biopsy done and came up

with IBM. I have been on 10 mgs of Pred. until I changed Drs. {an internal

Med.} He changed the Pred. to 40 mgs and so far I feel pretty bad. This was

done on the 7th. I will wait a few days and see if I feel any better. As a

rule, when you go up on Pred. you feel better and you regain your

strength--but not this. I don,t get discourged--just have a lot of patience.

Please tell us about youself and what you have and what kind of medication

you are taking, if any and maybe as a group, we can all give you moral

support.

Good Luck,

Ev.

I'm a bit late, but welcome chesterascal@...

You will love this group! They are very informative and comforting. It is so wonderful to be able to 'talk' here where people understand you and what you are going through.

Again, Welcome!

=

karen

dm

Re: New OurMyositis member

I would like to take this time to WELCOME our newest member,chesterascal@..., to the list. When you feel comfortable pleasetell us a little bit about yourself. We have a great bunch of peoplehere so feel free to jump right in. My name is Vicki, list owner, andI hope you enjoy your stay.

..

[Guest guest]

Please Welcome our newest member, ditzyxgyrl@..., to the list. My

name is Vicki and when you feel comfortable please tell us a little bit

about yourself. We hope you enjoy your stay....

[Guest guest]

Hello Everyone...

I would like to WELCOME our newest member, drmomentum@..., to our

list. Please feel free to jump right in and tell us a little bit about

yourself. Our list is casual and we have a great bunch of people here.

My name is Vicki, list owner, and I hope you enjoy your stay...

[Guest guest]

> My name is and I am the father of two wonderful girls. My

> oldest is 5 and has Sensory Integration Dysfunction, but is

> otherwise a bright and healthy little girl. My youngest (Maitland

> -- " Mattie " for short) is 3 and was diagnosed with JDMS this past

> week.

Hi again - everyone else, has already found 's Diary

and contacted me.

> I'm sure many of you on this list know the conflicting emotions I

> am going through. I am clinging to the positive prognoses that

> the literature describes for the majority of juvinile cases. At the

> same time I am frightened for my daughter's muscles, general

> health, and for what the side effects will do to her.

It can be, and likely will be, a tough road to recovery, but keep the

faith. You sound a lot like how I felt at first. The uncertainty is

the worst of it. I know it's cliche, but try to take things as they

come and don't dwell too much on what " might " happen -- think " One day

at a time " . It works for me, and frankly, you and I seem a lot alike

to me.

> I have tons of questions (I already posted one about Zantac).

> Another question on my mind is this:

>

> Do JDMS patients ever get completely off medication? Are they

> monitored forevermore after that? I know no one can tell me what

> the future holds for my daughter, but I am interested in hearing

> about some of the most positive outcomes while I am preparing

> for the worst case.

I've already answered this for you privately, , but I'll summarize

for everyone on the list. The vast majority (95%-98%) of JDMS kids

diagnosed before puberty achieve full recovery - no drugs, no symptoms,

and no recurrence. In fact, I've gotten email from many adults who had

JDMS as kids (and found the Diary) and have gone on to completely

normal adult lives. Remember, too, that the medical science has

advanced in the intervening years and things are better now than ever.

In other words, there is good reason for hope.

Ralph

==========================================================

Ralph Becker http://www.ralphb.net/

Will Juggle for Food. RKBA!

[Guest guest]

> Hi again - everyone else, has already found 's Diary

> and contacted me.

I'll reiterate here my thanks for your recording of your experiences

in the diary. I've already gone through some of it and am finding it

very enlightening and interesting.

I find that writing helps me deal a bit. In the last few months I had

been dabbling with writing for Epinions.com... product reviews and

such. Last week I felt that I had to get out what I was feeling, so I

wrote a editorial on it. Expressing those feelings in writing doesn't

get rid of them, but it made me feel better. I just may keep my own

diary.

Here's the editorial for anyone interested:

http://www.epinions.com/kifm-review-6624-111D75FE-3993416D-prod1

-

--

J. P. Burke .... drmomentum@...

Epinions profile: <http://drmomentum.epinions.com/user-drmomentum>

" Rest in reason. Move in passion. " - Kahlil Gibran

[Guest guest]

Hi ....I just read your editorial ... I put myself in your position

along with Ralph and Cari and I don't know if I would have the strength

to hold up. I pictured myself holding my daughter when she was that

age and I can tell you it brought tears to my eyes. Children are such a

blessing and as parents you want to always protect them from all harm.

Take one day at a time....let her little body rest as much as possible

..... She will get through this. Thank you for writing that, I think

it's important to let people know what you think and feel. Maybe one

day they will be in the same position and remember your editioral. Keep

up the great work.. My hat is off to all you parents that have to go

through this. Lets all pray for better days ahead.

Take care..

Vicki-PM

[Guest guest]

>

> > Hi again - everyone else, has already found 's Diary

> > and contacted me.

>

> I'll reiterate here my thanks for your recording of your

> experiences in the diary. I've already gone through some of it and

> am finding it very enlightening and interesting.

Thanks very much. Glad you're enjoying it and are learning from it.

> I find that writing helps me deal a bit. In the last few months I

> had been dabbling with writing for Epinions.com... product reviews

> and such. Last week I felt that I had to get out what I was

> feeling, so I wrote a editorial on it. Expressing those feelings in

> writing doesn't get rid of them, but it made me feel better. I just

> may keep my own diary.

>

> Here's the editorial for anyone interested:

> http://www.epinions.com/kifm-review-6624-111D75FE-3993416D-prod1

Very moving. Thanks for sharing. I doubt that many who read it that

aren't in this forum will get it completely.

I also envy your skill as a writer. I'm strictly a hack by comparison.

Ralph

==========================================================

Ralph Becker http://www.ralphb.net/

Will Juggle for Food. RKBA!

[Guest guest]

At 9:00 AM -0400 8/13/00, Ralph Becker wrote:

> > Here's the editorial for anyone interested:

> >

><http://www.epinions.com/kifm-review-6624-111D75FE-3993416D-prod1>http://drmome\

ntum.epinions.com/kifm-review-6624-111D75FE-3993416D-prod1

>

>Very moving. Thanks for sharing. I doubt that many who read it that

>aren't in this forum will get it completely.

You're quite probably right. I hope they get from it the feelings of

conflict a parent in this situation experiences. On the one hand

there is a probable positive outcome, on the other hand is the

struggle and uncertainty. Also, there is the conflict between your

own feelings and the strength you must have for your children.

>I also envy your skill as a writer. I'm strictly a hack by comparison.

When I write about my children, I write best. Usually my subject

matter is lighter, with a touch of humor. That editorial just came

out.

-

--

J. P. Burke .... drmomentum@...

Epinions profile: <http://drmomentum.epinions.com/user-drmomentum>

" Rest in reason. Move in passion. " - Kahlil Gibran

[Guest guest]

Hi,.....and thanks for the welcome! :-) I joined this list because I think

I might have PM, or one of the myositises, and I need all the information I

can get to take to my Dr., plus to help me understand what is going on in my

body. I have a rather long and complicated medical history, so I'll try and

touch on the highlights and not be too lengthy.

I think I have PM, and I think it started back when I was in HS. I was very

athletic, and had good muscle tone, and not an inch of fat on me. I was very

use to making my body do for me what I needed to sustain my athletic

abilities. So, I was accustomed to working them very hard, and my muscles

were very strong then. So it seemed odd to me when I developed muscle spasms

in my back only on the right side, and I had these hard knots. The pain was

so bad I stayed home from school a few days resting and taking hot baths.

Finally everything seemed to calm down, and for the next few years I didn't

have a reoccurance. That was back in the '60's,......now jump to the

80's.......I had a couple kids, one was born premature, and ever since then

I have been sick. In '81 I woke with excruciating pain in my neck, so I went

to a chiropractor, and he couldn't adjust my neck, and left it sorer than

ever. Within the week I had a stroke like event that landed me in the hosp

for 10 days. I know now that it was Transverse Myelitis which is

inflammation to the spinal cord caused by an infection. At the time no one

knew that so I had a dx of possible MS. I lost the use of my legs, and the

upper right side of my body was weak, and alot of sensory dysfunction going

on. Pins and needles, crawly feelings, pain, and a little numbness and

swelling. PT did nothing to bring back the function to my right hand/am, and

today I'm still disabled from it, but my legs regained their strength back

then. So for the next few years I was told I probably had MS because of all

the weird symptoms that would come and go. In '84 I started noticing a

burning pain in my forearms. The Dr. said it was Fibrositis, and tried me on

antiinflammatories which I couldn't tolerate because I also have irritable

bowel syndrome, and stomach problems. So, I sufferred with the pain for

years, and then someone changed that DX to Fibromyalgia, and then recently a

Neurologist I saw said no, the pain was from the TM/MS. [see I told you this

would be complicated]

Well, getting to my point,.......I think I really had the first stages of PM

when I was dx'ed with fibrositis. I've had elevated sed rates, recently

elevated muscle and liver enzymes. I think it's PM because whatever has been

going on has been a slow steady progression to the point now that I am quite

disabled from the pain/weakness not only in my arms/shoulders, but it has

spread to my thighs, calves, hips/pelvic, ribs, and in the back area that

had the first spasms in HS. I have lumps in all these areas that burn with

pain even if they aren't being touched. I generally feel unwell 95% of the

time, and I have breathing problems, and recently swallowing problems. All

of this isn't typical for TM/MS, so I've been looking for alternative

illnesses that would answer these other symptoms.

They said the weakness was from the MS but this weakness in my legs was a

gradual weakness that developed over the years after that first attack. TM

doesn't progress. I know the difference between healthy feeling muscles and

muscles that feel like mush. AND it wasn't from lack of use. I still tried

to maintain an active lifestyle for years until my muscles gave up on me. I

use to say if they won't budge then how can I move them? I wasn't paralyzed

because I could feel everything still, but after I used my legs even just

walking they would be very very tired feeling, and I would have to rest for

awhile before I could go on. I mostly just had the lumps in my arms, but

within the last few years I've developed them in the other parts of my body

that I mentioned above. All the Dr.'s I've seen just scratch their heads and

tell me they don't know what's going on. Half the time they zero in on my

weight gain [and it has been substantial because I just don't have the

strength, or energy, and pain levels are very high to do anything real

physical] but I try to tell them that the weight gain came after not before.

I wasn't one to sit still for long, so I know that I wasn't just being lazy.

Well, the last Dr. I saw that did the enzyme tests wanted to do a EMG, and

possibly a muscle biopsy but my insurance ran out, and I didn't get to have

them done. I am going to pursue the PM dx though because of all I've read it

comes the closest to what I have been experiencing.

There are some days when my body just feels so inflammed and it hurts so bad

that I just cry, and I'm not a crier. It's during those times that I think

that there's got to be something else systemic going on with me because some

of the pain isn't in places that weight would put any pressure. I had some

x-rays done of my hips/pelvic areas and my Dr. then said he was shocked to

see such deteriation in the cartilage. I was only 45 or so, and he said he

thought he was looking at the x-rays of a 70 year old.

So,...gang sumpin's going on, eh? Also, I've had mycoplasma pneumonia many

times over the last 30 years.

[oops I guess there was no way to make this any shorter]

Thanks again for the welcome, and I hope to hear from anyone. :-)

Smiles, Jax [that's short for Jackie, and ruby is my birthstone, so hence:

RubyJax]

anzavic@... wrote:

> Hello everyone...

>

> Please WELCOME our newest member, rubyjax@..., to our list. My

> name is Vicki, list owner, and when you feel comfortable please tell us

> a little bit about yourself. We have a great bunch of caring people so

> when ready just jump right in. Hope you enjoy your stay.

>

>

[Guest guest]

Hi Jax....please don't ever worry about the length of your posts... none

of us mind and we really need to know what you've gone through. I have

PM and I went thought just about everything you have gone through with

the doctors. I never had the lumps on my body and don't know what those

could be. May I ask your current age...?

You say your unable to work right? And your insurance has run out....

were you able to go on Cobra insurance through the company you worked

for? You can still purchase health insurance through the Cobra

division.... they can't refuse you at all. It would be something you

really need since you are currently ill. You can't apply for your SSI

if you don't have a diagnoses. Once you have that then you can apply for

it.

Doctors....well, we have way to many doctors who are unfamiliar with

myositis and it has been many times diagnosed MS or something else.

You need the EMG along with the muscle biopsy done to confirm what you

have. I would try to find a doctor in your area that deal with

myositis... maybe a large clinic near your area. What part of the

country do you live in... maybe we can hunt for a doctor for you.

As I was reading your post I was remembering back when I was going from

one doctor to another... the pain was so great that I too would sit down

and cry and I'm a tough person.... I also was very athletic... Running,

riding bikes, avid weight lifter, mountain climbing, swimming and etc,

etc... I had a very lean muscular body and was in tip top shape. Very

strong...especially upper body strength. One day I woke up with flu

like symptoms...which continued for a few weeks.. my trainer told me to

see the doctor which he said I had the virus that was going around.

Three months later I was still the same...no energy and burning

sensation in my arms. Years went by and I was told by my doctor that he

didn't know why I was like that but to just live with it. After many

years and god only knows how many doctors.. I knew I wasn't going to

make it if I didn't find a new doctor. I left my health care provider

and went to Scripps clinic where on first appt. was hospitalized. Like

I said...far to many doctors just pass this off or won't really look

into this. After receiving my medical records... I found I had a

positive ANA test done in 1993 along with a high Sed rate and CPK...yet

the doctor said all labs came back normal. Now I am sent all my lab

results as soon as they are completed.

We've all been there and it's not an easy road... we'll all try to help

you as much as possible....

Vicki-pm