NEW MEMBER

[Guest guest]

Welcome to the group. I am sure you will find lots of information and

support here.

Sue, mother of , 10, hearing, and

, 8 (as of today!) hoh

[Guest guest]

Hi ! I am relatively new here also. Welcome! I have enjoyed reading

about the diverse families and how they find what works for them. My son

is profound due to meningitis at 5 mos. He is 4 yrs old now and uses a

cochlear implant. Along the way though we used HA's and ASL. We still sign

some... dropped it on his own. lipreads too. This is a great

place because we all respect each families decisions and we try to help with

some of the problems that come up.

attends an oral deaf preschool in public school. There are only 9 kids

from our county attending and none live close but at least he sees them at

school.

Mom to 4 yrs old, N24 8/98

[Guest guest]

Nice to see you here. I watch this list all the time, whether I am directly

responding or not. One of the things I especially like about it is that it

is archived, so I can always go back and search for something in the past.

Helps me get past my " delete-phobia " .

Another great thing is the responses from Kay that send you to the

appropriate part of the web site to answer questions. Often the answers are

there, I just didn't know where to look for them.

And, further, the help from Celeste in the journey through the IEP jungle is

wonderful!

Welcome.

Judith, co-mom with Dawn of

Pearl, ph, , , and Angie at home

deaf, HOH, HOH, normal, hyperacusis, normal - at least in hearing

and Jody and Rechal, who think they're grown up cuz they moved out

three cats, a hearing dog named Gadget

and getting two new puppies tomorrow for hearing dog training

(thank goodness the stupid crayfish expired)

and a partridge in a pear tree (LOL)

New Member

Hello All,

My name is , but most people know me as 'Hana's Mom " ! Hana is my

nine year old daughter. She has a severe to profound, bi-laterial,

sensori-neural loss, since birth. She was diagnossed by ABR testing at nine

days old. At this time we are living in a rather isolated area from other

deaf children. Hana is the first deaf child to ever attend this public

school district. She has an interpreter skilled in both ASL and SEEII. At

home we use SEEII but are beginning an ASL course.

My future goal for Hana is that she master both ASL and oral/written

English by the time she graduates. I feel it is my responsibility to give

her open doors to all areas of deafness and language so that when she is an

adult she may choose freely between the deaf and hearing communities and not

be forced into one or the other due to my choices in language.

Hana does not have a Cochlear. I was told she was inelligible when she

was two because she does retain some hearing, just not enough to hear

speech. At this time she in not interested in receiving a Cochlear. She

wears hearing aids and uses an FM system at school. Her speech has already

progressed beyond what I ever imagined possible. She will complete the

DASLII speech program this year.

I have heard lots of great things about the Listen-up forum and am hoping

to meet some nice people that are sharing the same experience of raising a

deaf child!

Thanks--

[Guest guest]

Welcome " Hana's mom " . LOL

Nice to meet you. You will find a lot of great people with all different

stories here on listen-up. I know I've learned a lot in the past month.

Donna

mother of ny 5 mod/severe hl

New Member

> Hello All,

>

> My name is , but most people know me as 'Hana's Mom " ! Hana is my

nine year old daughter. She has a severe to profound, bi-laterial,

sensori-neural loss, since birth. She was diagnossed by ABR testing at nine

days old. At this time we are living in a rather isolated area from other

deaf children. Hana is the first deaf child to ever attend this public

school district. She has an interpreter skilled in both ASL and SEEII. At

home we use SEEII but are beginning an ASL course.

>

> My future goal for Hana is that she master both ASL and oral/written

English by the time she graduates. I feel it is my responsibility to give

her open doors to all areas of deafness and language so that when she is an

adult she may choose freely between the deaf and hearing communities and not

be forced into one or the other due to my choices in language.

>

> Hana does not have a Cochlear. I was told she was inelligible when she

was two because she does retain some hearing, just not enough to hear

speech. At this time she in not interested in receiving a Cochlear. She

wears hearing aids and uses an FM system at school. Her speech has already

progressed beyond what I ever imagined possible. She will complete the

DASLII speech program this year.

>

> I have heard lots of great things about the Listen-up forum and am hoping

to meet some nice people that are sharing the same experience of raising a

deaf child!

>

> Thanks--

>

>

>

[Guest guest]

In a message dated 2/19/01 9:22:24 AM Eastern Standard Time,

craddock@... writes:

> My son also

> had a cholestiotoma in his better hearing ear. Thank goodness it was removed

> before any major damage.My sons cardiologist said that there is a link

> between children with heart diease and " small ear canals " ?? My three sons

> (sounds like a tv show?,I am showing my age) all have heart disease and

> small hear canals and alot of problems with ear wax.

>

Hi Ruth!

This is really interesting! How was the cholestiotoma detected? After the

first 2 of the 4 surgeries her ear closed up and that is when they sent us

to Boston to have more surgery. The cholestiotoma wasnt' discovered until the

ear was opened up. It didnt' even show up on the CAT SCAN.

In June of 1999, when was 12 yrs old is when the heart problems

were discovered. She has AV Nodal Reentrant Tachycardia and a leak in the

aortic valve. And the ear wax!!!! It is not a problem in the bad right ear

because it doesn;t produce any wax at all. The new ear canal is lined with a

skin graft from her upper arm. the left ear produces so much that we have to

have it removed by the ENT or the pediatrician. It doesn't come out on it's

own. And that makes the hearing in that ear go down! It seems to be a no win

situation!!!

Anyways, I am glad to be here and to have met you.

suki

[Guest guest]

Hi Suki, Welcome! I am so sorry for all your daughters problems! My son also

had a cholestiotoma in his better hearing ear. Thank goodness it was removed

before any major damage.My sons cardiologist said that there is a link

between children with heart diease and " small ear canals " ?? My three sons

(sounds like a tv show?,I am showing my age) all have heart disease and

small hear canals and alot of problems with ear wax.

God bless you and best of luck, be strong and hang in there!

Ruth mom of Dylan(hearing loss) & Adam 4 & big bro n 7

New Member

> Hi everyone,

>

> I am new here, my name is Sue, but I go by Suki. I have a 13 yr old

daughter

> who is hearing impaired with a severe loss in the right ear and a moderate

> loss in the left ear. At about the age of 3 yrs old, we found out that

she

> had a congenital defect in both ears, canal stenosis. After hoping that

the

> ear canals would widen on there own, it was decided to surgically widen

them.

> She had 4 operations to widen the right ear canal. The last 2 were in

Boston

> MA. The first on lasted 10 hous because they found cholestiotoma in the

ear

> canal, around the eardrum and around the first two hearing bones. The ear

> drum and hearing bones were removed and the ear canal was opened up. Two

> months later the ear canal was closed again and nothing was keeping it

> opened. she went back in for more surgery. In this surgery, the replaced

the

> eardrum with a bigger one, and replaced the hearing bones with one

prothesis.

> She has a new ear canal made in the mastiod bowl. This was done in 1996.

Her

> hearing has gone down even more, but not a lot. She has hearing aids and

has

> just started wearing the right one after years of not wanting to wear it.

>

> She has an IEP in school and has just been placed in a language based self

> contained special ed classroom in another junior high in our small city.

We

> do have a case manager from the Commision for the deaf and hard of hearing

> and just finished up an Independent Educational Evaluation at the Boston

> Center for Deaf and Hearing Impaired Children. As well as being hearing

> impaired, Steph also has 2 heart conditions, ADD, and several different

> learning styles. She also has delays in her emotional, and behavioral

> developments.

>

> Since being placed in the special; ed class this school year, she has

started

> doing wonderfully!! This is her second year in the 7th grade.

>

> At home, Steph has a 15 yr old sister, Aimee, and me, her mom. We also

have a

> pet dwarf rabbit.

>

> Well thank you for letting me join this group and I apologize for such a

long

> intro.

>

> suki

>

>

>

[Guest guest]

> I am new here, my name is Sue, but I go by Suki.

Welcome Suki! We're glad to have you with us!

Kay

[Guest guest]

Hi Blair...

I have a friend from New Jersey, and I asked her if she had any info for

you - so don't be suprised if you receive an e.mail from her!

Regards

New Member

Hi, my name is Blair and I am a new member. My son is

4 years old and he has moderate hearing loss in both

ears. We just found out a few months ago. Now he has

BTE hearing aids. I have seen much improvement with

him but he still seems to have difficulty hearing

everthing and he does have delayed speech. He is in a

Language based pre-school program at school but I was

wondering if he should be in a special schoool for

hearing-impaired children. I try so hard to do the

right thing for him and it is all so overwhelming! I

appreciate your support. Are there any organizations

in New Jersey that is helpful with all of this?

__________________________________________________

[Guest guest]

He is in a

> Language based pre-school program at school but I was

> wondering if he should be in a special schoool for

> hearing-impaired children. I try so hard to do the

> right thing for him and it is all so overwhelming!

Welcome, Blair! I was in your shoes just a few months ago with a

newly-diagnosed 4-year-old son and I can tell you that the smartest thing I

did was to log onto Listen-up and to join this list. There is such a wealth

of knowledge here and everyone is very willing to share (that's why we're

here).

As far as your question about school, I think your decision will need to be

based on many factors. My son also had speech delays (he was in

special ed and speech therapy for a year before I insisted on the hearing

test) and was in a " language-based " preschool program. In our case, that

setting didn't work (various reasons which included a class size of 20 kids,

an SLP with ZERO experience with HOH children, has a condition that

appears to be causing further HL) and we have now placed in a school

specifically for hearing impaired kids at school district expense. The

school uses total communication and that has worked wonderfully in our

particular case. ( is basically oral but is a very visual kid and does

best with sign and speech together. The sign has also eased his frustration

when he can't make something understood because of his speech delay.)

Of course, only you know your son and what will be comfortable for your

family. How do you personally feel when you are in your son's classroom (if

you have that opportunity)? How well is the staff listening to your

concerns and addressing them? Do you have an IEP in place and what does it

call for in terms of dealing with your child's particular needs? Your

school district may have a whole different approach than mine and/or

programs that are more appropriate for a child with hearing loss. I hope

that someone on the list can steer you to someone who can help advocate for

you in your area. I had that luxury with someone here and I truly think

we'd still be struggling if not for her.

Carol - mom to . 4.10, mod to severe/profound HL, EVAS

[Guest guest]

Hi Carol, thanks for writing back to me. My son

is in a very nice school environment. He has 7

children in his class and 2 teachers, as well as a

speech therapist on hand, which he gets 3 times per

week. The teachers are very protective of and

treat him very well. He is also learning alot there

and has made friends. I really worry about him when it

comes to kindergarten and older. I want him to be in a

school where he can excel and not have difficulties.

Blair

mother of Kaitlin(5) and (4 HOH)

--- cbenecke wrote:

> He is in a

> > Language based pre-school program at school but I

> was

> > wondering if he should be in a special schoool for

> > hearing-impaired children. I try so hard to do the

> > right thing for him and it is all so overwhelming!

>

> Welcome, Blair! I was in your shoes just a few

> months ago with a

> newly-diagnosed 4-year-old son and I can tell you

> that the smartest thing I

> did was to log onto Listen-up and to join this list.

> There is such a wealth

> of knowledge here and everyone is very willing to

> share (that's why we're

> here).

>

> As far as your question about school, I think your

> decision will need to be

> based on many factors. My son also had speech

> delays (he was in

> special ed and speech therapy for a year before I

> insisted on the hearing

> test) and was in a " language-based " preschool

> program. In our case, that

> setting didn't work (various reasons which included

> a class size of 20 kids,

> an SLP with ZERO experience with HOH children,

> has a condition that

> appears to be causing further HL) and we have now

> placed in a school

> specifically for hearing impaired kids at school

> district expense. The

> school uses total communication and that has worked

> wonderfully in our

> particular case. ( is basically oral but is a

> very visual kid and does

> best with sign and speech together. The sign has

> also eased his frustration

> when he can't make something understood because of

> his speech delay.)

>

> Of course, only you know your son and what will be

> comfortable for your

> family. How do you personally feel when you are in

> your son's classroom (if

> you have that opportunity)? How well is the staff

> listening to your

> concerns and addressing them? Do you have an IEP in

> place and what does it

> call for in terms of dealing with your child's

> particular needs? Your

> school district may have a whole different approach

> than mine and/or

> programs that are more appropriate for a child with

> hearing loss. I hope

> that someone on the list can steer you to someone

> who can help advocate for

> you in your area. I had that luxury with someone

> here and I truly think

> we'd still be struggling if not for her.

>

> Carol - mom to . 4.10, mod to severe/profound

> HL, EVAS

>

>

>

>

>

>

>

__________________________________________________

[Guest guest]

Hi ,

I really appreciate that you sent your friend my

e-mail. She said she would help me since she went

through this herself. I thought that was very nice of

her.

Thanks so much.

Blair

--- wrote:

> Hi Blair...

> I have a friend from New Jersey, and I asked her if

> she had any info for

> you - so don't be suprised if you receive an e.mail

> from her!

> Regards

>

> New Member

>

>

> Hi, my name is Blair and I am a new member. My son

> is

> 4 years old and he has moderate hearing loss in

> both

> ears. We just found out a few months ago. Now he

> has

> BTE hearing aids. I have seen much improvement

> with

> him but he still seems to have difficulty hearing

> everthing and he does have delayed speech. He is

> in a

> Language based pre-school program at school but I

> was

> wondering if he should be in a special schoool for

> hearing-impaired children. I try so hard to do the

> right thing for him and it is all so overwhelming!

> I

> appreciate your support. Are there any

> organizations

> in New Jersey that is helpful with all of this?

>

> __________________________________________________

>

[Guest guest]

Hi Blair...

It was a pleasure . I 'spoke' to her last night, and told me that she would

be helping you - we all need all the help we can get!

Good Luck!

New Member

>

>

> Hi, my name is Blair and I am a new member. My son

> is

> 4 years old and he has moderate hearing loss in

> both

> ears. We just found out a few months ago. Now he

> has

> BTE hearing aids. I have seen much improvement

> with

> him but he still seems to have difficulty hearing

> everthing and he does have delayed speech. He is

> in a

> Language based pre-school program at school but I

> was

> wondering if he should be in a special schoool for

> hearing-impaired children. I try so hard to do the

> right thing for him and it is all so overwhelming!

> I

> appreciate your support. Are there any

> organizations

> in New Jersey that is helpful with all of this?

>

> __________________________________________________

>

[Guest guest]

In a message dated 3/9/2001 8:08:45 PM Eastern Standard Time,

im3carfan3@... writes:

> we were referred to chapel hill,

> where we very fortunate to qualify for the CCCDP (Carolina Children's

> Communicative

Welcome to the list! We use UNC too and they won't push you into anything,

they are so supportive of the families and what is best for the children.

The program paid what insurance didn't pay on my sons implant so I a right

fond of them!!!!

My son was BARELY a borderline candidate for the implant by audiogram, but

was implanted due to speech delay and having auditory neuropathy. We first

thought of it when he just turned four. He was implanted at the age of 5

years with a language level of about 2-2.5 years. He was 5 and 7 months

starting kindergarten because of his birthday.

So, I understand the concern about entering Kindergarten with such a large

language gap because I am living that nightmare now. My son is repeating

this year, but I knew it going into school so I wasn't a shock.....just that

I sometimes feel that it is SO unfair to him to be the only Kindergartner

with pages of 5 pages of homework, reading, speech therapy and language

therapy EVERY day, even weekends just trying to get caught up. Then he knows

it is weird that he is the only 7 year old in the class and doesn't

understand why. I really regret the fact that I made the decision not to

implant him at 4 years because I think they year could have made a big

difference for him.

Anyway, its late and I will go but feel free to email me personally or IM me

if you see me online. Beat4girl@....

Where are you from?

Elaine

Cueing Mom to Jake/Auditory Neuropathy/Clarion S-Series 2-99

[Guest guest]

Have they recommended the use of Fast Forword with Jake? It's a great

way of improving a child's ability to process auditory information.

beat4girl@... wrote:

>

> In a message dated 3/9/2001 8:08:45 PM Eastern Standard Time,

> im3carfan3@... writes:

>

> > we were referred to chapel hill,

> > where we very fortunate to qualify for the CCCDP (Carolina Children's

> > Communicative

>

> Welcome to the list! We use UNC too and they won't push you into anything,

> they are so supportive of the families and what is best for the children.

> The program paid what insurance didn't pay on my sons implant so I a right

> fond of them!!!!

> My son was BARELY a borderline candidate for the implant by audiogram, but

> was implanted due to speech delay and having auditory neuropathy. We first

> thought of it when he just turned four. He was implanted at the age of 5

> years with a language level of about 2-2.5 years. He was 5 and 7 months

> starting kindergarten because of his birthday.

>

> So, I understand the concern about entering Kindergarten with such a large

> language gap because I am living that nightmare now. My son is repeating

> this year, but I knew it going into school so I wasn't a shock.....just that

> I sometimes feel that it is SO unfair to him to be the only Kindergartner

> with pages of 5 pages of homework, reading, speech therapy and language

> therapy EVERY day, even weekends just trying to get caught up. Then he knows

> it is weird that he is the only 7 year old in the class and doesn't

> understand why. I really regret the fact that I made the decision not to

> implant him at 4 years because I think they year could have made a big

> difference for him.

>

> Anyway, its late and I will go but feel free to email me personally or IM me

> if you see me online. Beat4girl@....

> Where are you from?

> Elaine

>

> Cueing Mom to Jake/Auditory Neuropathy/Clarion S-Series 2-99

>

>

[Guest guest]

Hi Martha,

I tried to send you a welcome message last night but I'm quite sure it

didn't work. My name is Annette, I'm 59 years old, and I have

dermatomyositis. I'm glad you joined this group. You'll enjoy the give and

take of our dialogue with each other. I've found the people within this

group to be very helpful, caring, and even at times entertaining. They share

our ups and downs when there may be no one else who understands. Welcome and

let us hear from you. Annette

NEW MEMBER

Hello Everyone....

Please WELCOME our newest member, Martha, to the list. When you feel

comfortable, please tell us a little bit about yourself. We have a

wonderful group of people here so we hope you enjoy your stay. Thank

you for joining.

Vicki

[Guest guest]

Hi

Welcome to the group......I have DM and had

swelling & pain for months before the weakness

showed up....unfortunately I was then misdiagnosed for several more

months......be

thankful that you have a dr that found it

quickly.

Prednisone is a love/hate situation.....I love

it for returning me to a point where i could

function again as a person.....I hate it for

the side effects....but balancing it out if I

had to make the choice again I would go

for the pred. With a few limitations I lead

a normal (if dull) life.

Everyone reacts differently so there are

probably as many different opinions as

there are people on the list.....this is just

my 2 cents worth

Teddi

mailto:teddifromok@...

[Guest guest]

Welcome

My name is , am 40 years old, and I was diagnosed in April 2000 with PM.

I too was on high doses of prednisone (60 mg/day) and experienced quite a bit of

weight gain (roughly 45 pounds) and excessive hair growth (facial and arms). I

know that these are common side effects but nonetheless hated !!!! It has been

well over a year and no signs of shedding any of the weight even though I am now

down to 15 mg/day !!! I am also getting methotrexate injections once a week and

take Fosamex for osteoporosis.

Now for the newest news...I had my annual physical a few weeks ago and low and

behold if they didnt send me a card stating that my glucose levels are way too

high as well as my cholesterol !!! It was suggested by them that I go on the

Sugar Busters Diet (which I ordered from Amazon). Anyone with any knowledge of

this diet ??? I will not be starting this until after I return from my cruise

as I know Ill be eating anything and everything I can get my hands on while on

the boat !!! Isnt that the whole point of a cruise ???

As for work, I am still struggling with working 40 hours/week. As you know, I

am not doing this by choice. My rheumy sent me a letter last Friday to give my

boss stating that I should be working a maximum of 30 hours/week but I havent

given it to them yet. Yesterday was a tough day for me mentally as I wanted to

tell them where they could stick their job all day but bit my tongue and toughed

it out. They insist on having me 40/hours or nothing. A little birdie

(actually one of my best friends who works here with me) told me that the owner

of the company I work for talked to her about my situation and mentioned to her

that they may have to lay me off due to the fact that he doesnt think I am

getting better. His words to her were that if in fact he does lay me off that

he was thinking of offering to pay my medical insurance for a year so that I

wont have to worry about that. Wellllllll, that is dandy but I am outraged that

he has put me in this prediciment. I have stress!

ed way too much over this and am

almost to the point of walking out. My resentment seems to be a little beter

today though as I dont feel the need to choke the hell out of someone yet. Yes

I realize it is only 9:45 am !!!

I am going this afternoon to have my cystoscopy done. It was originally

scheduled for last week and I drove one hour to get there only to be told that

the doctor had " just called in " and was sick as a dog. I was given a banana as

a consolation prize and sen on my merry way. Was able to have the Urodynamic

Testing done last week and hopefully between the two tests, they will have a

solution to my weak bladder muscles. I am game for any solution at this point

!!!!

So there you have it, the trials and tribulations of my life at the present time

!!! Ill just keep on keeping on and smiling the whole way !!! As Ive always

said.....Eat one live toad in the morning and nothing worse can happen the whole

day !!!

[Guest guest]

,

Welcome to the group. My son's DM started with facial rash and because of

his age we really don't know how long he may have been experiencing muscle

weakness and pain. Very quickly his muscles began to deteroate and he was

in obvious pain. 's experience with Prednisone has been mostly for the

postitive. Because he was treated so quickly, he has no permanent muscle

damage and is doing very well at this time. I have met other patients who

were diagnosed before the muscle pain and weakness set in. Your Doctor

sounds like a good one! They are hard to find. Like individuals who get a

cold, some just suffer the sniffles and in others the cold causes fever and

days of bed rest, myositis can affect different people to different degress.

Don't think that because others have some different symptoms or more

aggressive symptoms that this would mean that you may not have the same

thing. Does that make sense? I am having a hard time saying this correctly

:-). Again, welcome. You have come to the right place for support and

information!

Hugs,

Cari

>From: TeddiFromOK@...

>Reply-To: OurMyositis

>To: OurMyositis

>Subject: Re: New Member

>Date: Wed, 5 Sep 2001 00:25:57 -0500 (CDT)

>

>Hi

>

>Welcome to the group......I have DM and had

>swelling & pain for months before the weakness

>showed up....unfortunately I was then misdiagnosed for several more

>months......be

>thankful that you have a dr that found it

>quickly.

>Prednisone is a love/hate situation.....I love

>it for returning me to a point where i could

>function again as a person.....I hate it for

>the side effects....but balancing it out if I

>had to make the choice again I would go

>for the pred. With a few limitations I lead

>a normal (if dull) life.

>

>Everyone reacts differently so there are

>probably as many different opinions as

>there are people on the list.....this is just

>my 2 cents worth

>

>

>Teddi

>mailto:teddifromok@...

>

>

>

>

>

>

>

>

>

_________________________________________________________________

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

[Guest guest]

Hello and welcome to the group.

I am so sorry that you have been diagnosed with this disease. Do you

have PM or DM?

Please don't look at the sites and base your symptoms on that alone.

All of us have very different symptoms. I know people who have a CPK

of 300 who are very ill and yet other people with a CPK of 8,000 that

feel fine. It's a very strange how this disease works.

We've all had the love hate relationship with prednisone and I can

understand your concern. When I entered the hospital my CPK was almost

12,000, I was very sick and could barely walk at all. The prednisone

brought that down but I've been left with damaged muscles. The longer

you let the inflammation go on the more damage that can be done to your

muscles.

Doctors hit the disease hard with the high dose of Prednisone first. If

that doesn't work to get it under control they bring out the other drugs

like immunosuppressants.

If you're very much against the prednisone and the other drugs used to

control and treat this disease, then antibiotics might be the way to go

and see if it works for you. It's a toss up and many doctors won't

prescribe the antibiotics for this disease. Connie might be able to

find a doctor in or around your area that would.

If you haven't taken any treatment at all, how are you currently

feeling? How's your breathing?

I can tell you that Prednisone will put weight on you. I gained 65 lbs,

had the moon face, water retention, facial hair. But, on the good side,

without it I wouldn't be here. I was able to breath better, brought

down the inflammation in my muscles and lungs. I was put on an

immunosuppressant early on so I could lower my prednisone level. I

developed steroid myopathy and had to reduce the prednisone level.

The most important thing to remember is that almost everything in your

body either IS a muscle or run BY a muscle. Treatment, whichever way

you choose to go, should be started as soon as possible to get the

disease under control.

Hope this helps a little and please let us know how your doing. This is

the place to vent.

Take care,

Vicki

[Guest guest]

Hi Gayle,

I'm Annette and I, too, have DM. Looking forward to hearing from you.

New Member

Hello Everyone....

Please Welcome our newest member, Gayle, to the list. We're so glad

you've found us and we hope you enjoy your stay. Gayle has DM.

Vicki

[Guest guest]

Hello Lynn and welcome aboard.

I have PM and consider myself lucky in that I don't have to also worry

about the rash that all you DM'ers have. I feel for you. The hair

loss is baffling to me since your not on any meds to cause this. I've

heard this happen to other people with DM. I am wondering if it has

anything to do with the rash being on the scalp? We all hate the drugs

taken but here I am three years after being diagnosed and I'm down to

10mgs of Prednisone. I had to increase back to 10 because my adrenal

gland has stopped functioning, I'll be put on a different drug on the

11th when I see my doctor. Then I can get back down to the 2mgs I was

once taking. I also use to take Imuran and I have been able to get off

that as well. I currently take Enbrel, Celebrex, Clonazepam along with

my Multi Vit., Vit. C, Vit E, Potassium and my Calcium.

I think the hardest time for any person is the very beginning of your

disease. It's hard to understand, hard to treat, hard to do normal

everyday tasks, and very hard for everyone around you to understand.

As time goes on it will get better.... Please ask any question you like

and we're open to all venting... :~) Hope you have a great day.

Vicki

[Guest guest]

Thanks for the warm welcome, Vicki...it's so nice to

have a place to come for understanding, support and

knowledge...

I want to alter my diet and eat " stuff " to nourish my

muscles...so may ask for a consult to a nutritionist.

Has anyone done this at the start of their myositis?

BTW, my doc said something about hair loss being part

of DM, but I can't find anything online at any of the

web sites, so far, to support it. Oh well. Can't

loose weight, can loose hair...and at my age, going

through menopause, if that has to happen, I sure wish

I'd loose my chin hairs!! Jeepers! LOL!

My mom has nasty psoriasis, it runs in my family.

Ouch...but so far, I'm just itchy in scalp, don't see

a rash.

Lynn

--- anzavic@... wrote:

>

> Hello Lynn and welcome aboard.

>

> I have PM and consider myself lucky in that I don't

> have to also worry

> about the rash that all you DM'ers have. I feel

> for you. The hair

> loss is baffling to me since your not on any meds to

> cause this. I've

> heard this happen to other people with DM. I am

> wondering if it has

> anything to do with the rash being on the scalp?

> We all hate the drugs

> taken but here I am three years after being

> diagnosed and I'm down to

> 10mgs of Prednisone. I had to increase back to 10

> because my adrenal

> gland has stopped functioning, I'll be put on a

> different drug on the

> 11th when I see my doctor. Then I can get back down

> to the 2mgs I was

> once taking. I also use to take Imuran and I have

> been able to get off

> that as well. I currently take Enbrel, Celebrex,

> Clonazepam along with

> my Multi Vit., Vit. C, Vit E, Potassium and my

> Calcium.

> I think the hardest time for any person is the very

> beginning of your

> disease. It's hard to understand, hard to treat,

> hard to do normal

> everyday tasks, and very hard for everyone around

> you to understand.

> As time goes on it will get better.... Please ask

> any question you like

> and we're open to all venting... :~) Hope you have

> a great day.

>

> Vicki

>

>

>

[Guest guest]

Lynn

Before I got the PM I was a BIG health nut. Worked out every day for

about 3 hrs and was very physically fit. So, I still continued with my

eating pattern after I was diagnosed. Once the Prednisone started

though, I noticed I CRAVED protein. I was never a big meat eater but

soon found myself looking at all the steers on the side of the road.

Just looking at them melted my mouth... and I would get the biggest

hunger pain. Cheese was another thing I couldn't get enough of. My

doctor said he understood because I was losing protein out of my muscles

and my body needed more to rebuild. It took about a year to stop

craving so much protein and I'm slowly getting back to normal. I eat a

lot of salads, yogurt and fresh fruits every day. I don't drink soda

of any kind unless I'm out and there is nothing else to drink. Water is

my choice of liquid. My doctor advised me to get off all soft drinks

in the very beginning.

When I went on the 60mgs of Prednisone I didn't know that I would lose

my hair and developed hair where no woman was suppose to have it. I

woke up one morning, looked in the mirror and thought my face was dirty.

Turned out that overnight I grew fine black hairs all across my forehead

and cheek area. I had more hair on my body that on my head. Not a

pretty site. The Nair that I tried to use burned my skin so I SHAVED my

face....LOL I'm thankful that I developed the steroid myopathy because

I was taken down from the high dose. Whew!!!!!

Vicki

[Guest guest]

Hi Lynn

Welcome to the group....you came to the right

place......lots of information, compassion and

freedom to gripe,whine or moan as needed.

I have DM and the muscle biopsy isn't that

bad ...of course everyone is different (our

stock refrain) I had mine done as an outpatient

and had very little discomfort......Hope you

get your answers soon.

Teddi

mailto:teddifromok@...

[Guest guest]

Lynn,

Hi and welcome. I am Cari. My son, , was diagnosed with Juvenile DM in Jan. of 99 at the age of 3. He is doing very well now and is in Kindergarten. He had his muscle biopsy done in his right thigh and tolerated it very well. We used Advil for discomfort but it really didn't seem to bother him too much.

started out on high doses of Prednisone and after 28 months was completely weaned off of it as of this past June 1. He is still on Plaquenil which he takes for his rash which has been under control for over 2 years now.

DM and JDM have a lot of similarities and some differences.

You have certainly found the right place for answers and compassion. Welcome.

Hugs,

Cari

--- Original Message -----

From: Lynn

To: OurMyositis

Sent: Sunday, September 30, 2001 10:29 PM

Subject: Re: New Member

Hi Teddi!!Thanks for the welcome!Sometimes I can be the biggest baby! LOL! Well, skinbiopsy first, then maybe an EMG, then maybe a musclebiopsy. What kinds of medicine are the DM'ers of the group on?I've heard a quinine for malaria (for the rash) and amed used to prevent organ rejection that's also givenfor rheumatoid arthritis, and lots of otherinteresting stuff. Wow, this is going to be sometrip!! The beginning sure hasn't been fun!!Lynn--- TeddiFromOK@... wrote:> Hi Lynn> Welcome to the group....you came to the right> place......lots of information, compassion and> freedom to gripe,whine or moan as needed.> I have DM and the muscle biopsy isn't that> bad ...of course everyone is different (our> stock refrain) I had mine done as an outpatient> and had very little discomfort......Hope you > get your answers soon.> > > Teddi> mailto:teddifromok@...> > > > > > > > > > >