Re: Neuro doctor appt.------IVIG?

[Guest guest]

Sue,

I am so glad you are going to try the IVIg. And your dad getting a power

chair-woohoo! Now you and him can go for walks together. Isn't it a great

feeling?? If I started anything, I am glad it is that! Take care of

yourself and your dad. Good news about your son's funeral license. I know

it was some time ago but success stories are great to hear anytime.

Keep us posted on the IVIg. I am going to have mine set up soon too. He did

tell me that there really is no need to go into the hospital for it. I will

be at the clinic and the doctors are right across the hallway. He actually

said he would rather me be there then the doctor can just run across the

hallway to check on me rather than across the street and through the

hospital. I also asked him about changing from a PM to an IBM dx and he said

that is not something that happens. What happens, probably is that the

biopsy was 'dirty' and not read properly the first time and they actually

missed the inclusions. He is ordering a report of my original biopsy to make

sure but he is confident they were right with the PM since it did go to UCLA

pathology for biopsy.

Anyway,

Have a great holiday weekend...

Zanna

[Guest guest]

Sue,

I am so glad you are going to try the IVIg. And your dad getting a power

chair-woohoo! Now you and him can go for walks together. Isn't it a great

feeling?? If I started anything, I am glad it is that! Take care of

yourself and your dad. Good news about your son's funeral license. I know

it was some time ago but success stories are great to hear anytime.

Keep us posted on the IVIg. I am going to have mine set up soon too. He did

tell me that there really is no need to go into the hospital for it. I will

be at the clinic and the doctors are right across the hallway. He actually

said he would rather me be there then the doctor can just run across the

hallway to check on me rather than across the street and through the

hospital. I also asked him about changing from a PM to an IBM dx and he said

that is not something that happens. What happens, probably is that the

biopsy was 'dirty' and not read properly the first time and they actually

missed the inclusions. He is ordering a report of my original biopsy to make

sure but he is confident they were right with the PM since it did go to UCLA

pathology for biopsy.

Anyway,

Have a great holiday weekend...

Zanna

[Guest guest]

Sue,

I am so glad you are going to try the IVIg. And your dad getting a power

chair-woohoo! Now you and him can go for walks together. Isn't it a great

feeling?? If I started anything, I am glad it is that! Take care of

yourself and your dad. Good news about your son's funeral license. I know

it was some time ago but success stories are great to hear anytime.

Keep us posted on the IVIg. I am going to have mine set up soon too. He did

tell me that there really is no need to go into the hospital for it. I will

be at the clinic and the doctors are right across the hallway. He actually

said he would rather me be there then the doctor can just run across the

hallway to check on me rather than across the street and through the

hospital. I also asked him about changing from a PM to an IBM dx and he said

that is not something that happens. What happens, probably is that the

biopsy was 'dirty' and not read properly the first time and they actually

missed the inclusions. He is ordering a report of my original biopsy to make

sure but he is confident they were right with the PM since it did go to UCLA

pathology for biopsy.

Anyway,

Have a great holiday weekend...

Zanna

[Guest guest]

Hi Sue, Sounds like good news for you. I like hear(reading) stories with happy enddings. Take care and have a great weekend.

Sherri

SUE GILLESPIE wrote:

Saw my neuro doc today and like Zanna I had a list of questions ,and some of the really good things from the websites different ones of you had posted. He is a good Dr. and was surprised I had so much to show him and to talk about. I nearly talked his ear off. I told him of this support group and recommended he tell his patients with myositis to join us so they would not be intimidated by their doctors especially when you know the doctors are being evasive and they only tell you what they want you to know. I told him of Alvaro with his IVIG treatment in Portugal, and that some of you were going to see if it may work for you. Then I asked what he thought about me getting it. He told me there was no guarantees, but a few patients benefited from it . I said " I want it". He did not hesitate to tell me that all right he would set me up for it in the next few weeks. He also told me I would have to be in the hospital(one of many in the medical center. I will be in Hermann Hospital). It will be an 8hour drip for five days under close supervision and while I am there will run more tests concerning the swallowing problem I have experienced recently,and my eyes not focusing at times. The IVIG will have to be repeated again later. I HATE to be hospitalized as it is such an inconvience on my family. I will have to have someone here 24 hours a day to take care of Dad. OH YEAH! I got Dad a power chair from the same place I got my scooter. He is so proud of it and even happier that medicare and his secondary insurance will pay for it. It is red just like my scooter. You see Zanna, what you started with your scooter.LOL. Here Dad is 100 years old last April and has this wonderful mobility convience. I am so glad you got a scooter Lem. We all need to get together for a race. Hope Beck gets her eye surgery done and you two can get to feeling better. And Dawn, Bless your heart, I just know you will get your SSD, and it makes me furious to see how hard they make things for you. DON'T let anyone keep you for fighting for what you are entitled to. Ed#2 Good for you for seeing how home schooling paid off. Kids can get pegged as retarded,among many other things, and other kids can be cruel to them. I know this from experience as my son was "pegged" as a day dreamer and not attentive when actually he was having siezures. Once he was diagnoised as having epilepsy he was medicated but got progressivly worse. He struggled through high school and Common Wealth College of Sciences,(drugged out on anti siezure medicine but graduated and after serving a 2 yr. apprenticeship passed his Texas State Board and holds boards in funeral directing and enbalming. I have shared this story with the group before but I think it was before you "found us". To make a long story short(or shorter) he was fired from his job due to his siezures. His epilepsy cost him his marriage, his job and self esteem. Now comes the good part. He had a very complex brain surgery that left him without speech and mobility,fine motor skills to name a few. We worked with him 2 hrs. every day 5 days a week for two years and during this time saw no seizure activity . He is now rehabilited, speaks, drives a car and has a job. God gave him a new life where his siezures are completely controlled. So you see God takes care of His children.There is so much I would like to say to each one of you but I feel like I have monopolized so much space. HAVE HOPE EVERYONE. We are all in this together. Really love you all. Sue Gillespie

[Guest guest]

Hi Sue,

I hope you really benefit from the IVig. Good for your dad! I bet he is happy with that power chair! And good for you having all those questions for your doc and being able to discuss those issues with him. I bet you are very proud of your son...he overcame a lot, you both did! Shows the power of families and their love and courage! Lynn

SUE GILLESPIE wrote:

Saw my neuro doc today and like Zanna I had a list of questions ,and some of the really good things from the websites different ones of you had posted. He is a good Dr. and was surprised I had so much to show him and to talk about. I nearly talked his ear off. I told him of this support group and recommended he tell his patients with myositis to join us so they would not be intimidated by their doctors especially when you know the doctors are being evasive and they only tell you what they want you to know. I told him of Alvaro with his IVIG treatment in Portugal, and that some of you were going to see if it may work for you. Then I asked what he thought about me getting it. He told me there was no guarantees, but a few patients benefited from it . I said " I want it". He did not hesitate to tell me that all right he would set me up for it in the next few weeks. He also told me I would have to be in the hospital(one of many in the medical center. I will be in Hermann Hospital). It will be an 8hour drip for five days under close supervision and while I am there will run more tests concerning the swallowing problem I have experienced recently,and my eyes not focusing at times. The IVIG will have to be repeated again later. I HATE to be hospitalized as it is such an inconvience on my family. I will have to have someone here 24 hours a day to take care of Dad. OH YEAH! I got Dad a power chair from the same place I got my scooter. He is so proud of it and even happier that medicare and his secondary insurance will pay for it. It is red just like my scooter. You see Zanna, what you started with your scooter.LOL. Here Dad is 100 years old last April and has this wonderful mobility convience. I am so glad you got a scooter Lem. We all need to get together for a race. Hope Beck gets her eye surgery done and you two can get to feeling better. And Dawn, Bless your heart, I just know you will get your SSD, and it makes me furious to see how hard they make things for you. DON'T let anyone keep you for fighting for what you are entitled to. Ed#2 Good for you for seeing how home schooling paid off. Kids can get pegged as retarded,among many other things, and other kids can be cruel to them. I know this from experience as my son was "pegged" as a day dreamer and not attentive when actually he was having siezures. Once he was diagnoised as having epilepsy he was medicated but got progressivly worse. He struggled through high school and Common Wealth College of Sciences,(drugged out on anti siezure medicine but graduated and after serving a 2 yr. apprenticeship passed his Texas State Board and holds boards in funeral directing and enbalming. I have shared this story with the group before but I think it was before you "found us". To make a long story short(or shorter) he was fired from his job due to his siezures. His epilepsy cost him his marriage, his job and self esteem. Now comes the good part. He had a very complex brain surgery that left him without speech and mobility,fine motor skills to name a few. We worked with him 2 hrs. every day 5 days a week for two years and during this time saw no seizure activity . He is now rehabilited, speaks, drives a car and has a job. God gave him a new life where his siezures are completely controlled. So you see God takes care of His children.There is so much I would like to say to each one of you but I feel like I have monopolized so much space. HAVE HOPE EVERYONE. We are all in this together. Really love you all. Sue Gillespie

[Guest guest]

Hi Sue,

I hope you really benefit from the IVig. Good for your dad! I bet he is happy with that power chair! And good for you having all those questions for your doc and being able to discuss those issues with him. I bet you are very proud of your son...he overcame a lot, you both did! Shows the power of families and their love and courage! Lynn

SUE GILLESPIE wrote:

Saw my neuro doc today and like Zanna I had a list of questions ,and some of the really good things from the websites different ones of you had posted. He is a good Dr. and was surprised I had so much to show him and to talk about. I nearly talked his ear off. I told him of this support group and recommended he tell his patients with myositis to join us so they would not be intimidated by their doctors especially when you know the doctors are being evasive and they only tell you what they want you to know. I told him of Alvaro with his IVIG treatment in Portugal, and that some of you were going to see if it may work for you. Then I asked what he thought about me getting it. He told me there was no guarantees, but a few patients benefited from it . I said " I want it". He did not hesitate to tell me that all right he would set me up for it in the next few weeks. He also told me I would have to be in the hospital(one of many in the medical center. I will be in Hermann Hospital). It will be an 8hour drip for five days under close supervision and while I am there will run more tests concerning the swallowing problem I have experienced recently,and my eyes not focusing at times. The IVIG will have to be repeated again later. I HATE to be hospitalized as it is such an inconvience on my family. I will have to have someone here 24 hours a day to take care of Dad. OH YEAH! I got Dad a power chair from the same place I got my scooter. He is so proud of it and even happier that medicare and his secondary insurance will pay for it. It is red just like my scooter. You see Zanna, what you started with your scooter.LOL. Here Dad is 100 years old last April and has this wonderful mobility convience. I am so glad you got a scooter Lem. We all need to get together for a race. Hope Beck gets her eye surgery done and you two can get to feeling better. And Dawn, Bless your heart, I just know you will get your SSD, and it makes me furious to see how hard they make things for you. DON'T let anyone keep you for fighting for what you are entitled to. Ed#2 Good for you for seeing how home schooling paid off. Kids can get pegged as retarded,among many other things, and other kids can be cruel to them. I know this from experience as my son was "pegged" as a day dreamer and not attentive when actually he was having siezures. Once he was diagnoised as having epilepsy he was medicated but got progressivly worse. He struggled through high school and Common Wealth College of Sciences,(drugged out on anti siezure medicine but graduated and after serving a 2 yr. apprenticeship passed his Texas State Board and holds boards in funeral directing and enbalming. I have shared this story with the group before but I think it was before you "found us". To make a long story short(or shorter) he was fired from his job due to his siezures. His epilepsy cost him his marriage, his job and self esteem. Now comes the good part. He had a very complex brain surgery that left him without speech and mobility,fine motor skills to name a few. We worked with him 2 hrs. every day 5 days a week for two years and during this time saw no seizure activity . He is now rehabilited, speaks, drives a car and has a job. God gave him a new life where his siezures are completely controlled. So you see God takes care of His children.There is so much I would like to say to each one of you but I feel like I have monopolized so much space. HAVE HOPE EVERYONE. We are all in this together. Really love you all. Sue Gillespie

[Guest guest]

I am going to try it! I am a little nervous about it but what do I have to

lose?? It can only make me better right?

My new rhuemy told me that my calves are beginning to atrophy. When they

aren't swollen, they are so thin in the shin area. Chicken legs.....

Zanna

[Guest guest]

I am going to try it! I am a little nervous about it but what do I have to

lose?? It can only make me better right?

My new rhuemy told me that my calves are beginning to atrophy. When they

aren't swollen, they are so thin in the shin area. Chicken legs.....

Zanna

[Guest guest]

I am going to try it! I am a little nervous about it but what do I have to

lose?? It can only make me better right?

My new rhuemy told me that my calves are beginning to atrophy. When they

aren't swollen, they are so thin in the shin area. Chicken legs.....

Zanna

[Guest guest]

Zanna,

So happy to hear that you are going to try a new treatment. Sure hope

it works for you! Remember while you're sitting there attached to IVs

for hours and feeling like you should be running after kids or

something, that there are a lot of people pulling for you!

Meanwhile, on Wednesday I delivered my biopsy slides to the neuro at

UCSF, who said he would go over them very closely with the pathologist

on Friday. He said my symptoms most closely match IBM, except for my

age. Silly man kept referring to me as " young " at 51!<g> He said in

practice he sees an equal number of men and women with IBM.

The UC pathologist told me on the phone that he didn't see

anything in the slides or electron microscopy that would lead him to

look further for IBM ... no rimmed vacuoles or inclusion bodies. But

he also didn't have special instructions to look for it.

The neuro explained that patients are often DXed with PM in the

absence of rimmed vacuoles, etc., but if they don't respond to

treatment, then IBM is suspected. The problem is that the vacuoles or

rods might not be in every muscle, so it's trial and error, whether

they show up in a particular biopsy.

He said that DM,PM, and IBM all have very different causes, even

though the symptoms are so similar (except for the DM rashes.)

He really seems to be leaning toward IBM because of my finger flexor

weakness and forearm muscle atrophy. But he also wants to try

treatment and I can tell you, I'm not giving in without a fight!

So more waiting, to hear the second opinion on the biopsy, and for the

neuro to call the rheumy and then to start on meds ... which ones I

still don't know, but probably methotrexate or prednisone.

You all know the drill ...

From the second OV the doc knows that I research things so he didn't

seem surprised that I already knew so much. He actually didn't say

anything that I haven't already learned from reading your discussions

and from google searches. What I most need now--the DX--can't be found

on google!

So now we go back to that old past time ... waiting for the phone to

ring with the doc on the line!

Tenayahh

> Sue,

> I am so glad you are going to try the IVIg. And your dad getting a

power

> chair-woohoo! Now you and him can go for walks together. Isn't it

a great

> feeling?? If I started anything, I am glad it is that! Take care

of

> yourself and your dad. Good news about your son's funeral license.

I know

> it was some time ago but success stories are great to hear anytime.

>

> Keep us posted on the IVIg. I am going to have mine set up soon

too. He did

> tell me that there really is no need to go into the hospital for it.

I will

> be at the clinic and the doctors are right across the hallway. He

actually

> said he would rather me be there then the doctor can just run across

the

> hallway to check on me rather than across the street and through the

> hospital. I also asked him about changing from a PM to an IBM dx

and he said

> that is not something that happens. What happens, probably is that

the

> biopsy was 'dirty' and not read properly the first time and they

actually

> missed the inclusions. He is ordering a report of my original

biopsy to make

> sure but he is confident they were right with the PM since it did go

to UCLA

> pathology for biopsy.

>

> Anyway,

> Have a great holiday weekend...

>

> Zanna

[Guest guest]

Zanna,

So happy to hear that you are going to try a new treatment. Sure hope

it works for you! Remember while you're sitting there attached to IVs

for hours and feeling like you should be running after kids or

something, that there are a lot of people pulling for you!

Meanwhile, on Wednesday I delivered my biopsy slides to the neuro at

UCSF, who said he would go over them very closely with the pathologist

on Friday. He said my symptoms most closely match IBM, except for my

age. Silly man kept referring to me as " young " at 51!<g> He said in

practice he sees an equal number of men and women with IBM.

The UC pathologist told me on the phone that he didn't see

anything in the slides or electron microscopy that would lead him to

look further for IBM ... no rimmed vacuoles or inclusion bodies. But

he also didn't have special instructions to look for it.

The neuro explained that patients are often DXed with PM in the

absence of rimmed vacuoles, etc., but if they don't respond to

treatment, then IBM is suspected. The problem is that the vacuoles or

rods might not be in every muscle, so it's trial and error, whether

they show up in a particular biopsy.

He said that DM,PM, and IBM all have very different causes, even

though the symptoms are so similar (except for the DM rashes.)

He really seems to be leaning toward IBM because of my finger flexor

weakness and forearm muscle atrophy. But he also wants to try

treatment and I can tell you, I'm not giving in without a fight!

So more waiting, to hear the second opinion on the biopsy, and for the

neuro to call the rheumy and then to start on meds ... which ones I

still don't know, but probably methotrexate or prednisone.

You all know the drill ...

From the second OV the doc knows that I research things so he didn't

seem surprised that I already knew so much. He actually didn't say

anything that I haven't already learned from reading your discussions

and from google searches. What I most need now--the DX--can't be found

on google!

So now we go back to that old past time ... waiting for the phone to

ring with the doc on the line!

Tenayahh

> Sue,

> I am so glad you are going to try the IVIg. And your dad getting a

power

> chair-woohoo! Now you and him can go for walks together. Isn't it

a great

> feeling?? If I started anything, I am glad it is that! Take care

of

> yourself and your dad. Good news about your son's funeral license.

I know

> it was some time ago but success stories are great to hear anytime.

>

> Keep us posted on the IVIg. I am going to have mine set up soon

too. He did

> tell me that there really is no need to go into the hospital for it.

I will

> be at the clinic and the doctors are right across the hallway. He

actually

> said he would rather me be there then the doctor can just run across

the

> hallway to check on me rather than across the street and through the

> hospital. I also asked him about changing from a PM to an IBM dx

and he said

> that is not something that happens. What happens, probably is that

the

> biopsy was 'dirty' and not read properly the first time and they

actually

> missed the inclusions. He is ordering a report of my original

biopsy to make

> sure but he is confident they were right with the PM since it did go

to UCLA

> pathology for biopsy.

>

> Anyway,

> Have a great holiday weekend...

>

> Zanna

[Guest guest]

Hi, Tenayahh. I sure hope they can give you a definitive dx this time

around. It's a shame that you have more waiting to do, but I'm sure you're

an old pro at it by now. LOL. We'll all be anxiously awaiting your news.

Good luck (if there's any luck involved with Myositis). LOL.

Dawn

tenayahh wrote:

> Zanna,

>

> So happy to hear that you are going to try a new treatment. Sure hope

> it works for you! Remember while you're sitting there attached to IVs

> for hours and feeling like you should be running after kids or

> something, that there are a lot of people pulling for you!

>

> Meanwhile, on Wednesday I delivered my biopsy slides to the neuro at

> UCSF, who said he would go over them very closely with the pathologist

> on Friday. He said my symptoms most closely match IBM, except for my

> age. Silly man kept referring to me as " young " at 51!<g> He said in

> practice he sees an equal number of men and women with IBM.

>

> The UC pathologist told me on the phone that he didn't see

> anything in the slides or electron microscopy that would lead him to

> look further for IBM ... no rimmed vacuoles or inclusion bodies. But

> he also didn't have special instructions to look for it.

>

> The neuro explained that patients are often DXed with PM in the

> absence of rimmed vacuoles, etc., but if they don't respond to

> treatment, then IBM is suspected. The problem is that the vacuoles or

> rods might not be in every muscle, so it's trial and error, whether

> they show up in a particular biopsy.

>

> He said that DM,PM, and IBM all have very different causes, even

> though the symptoms are so similar (except for the DM rashes.)

>

> He really seems to be leaning toward IBM because of my finger flexor

> weakness and forearm muscle atrophy. But he also wants to try

> treatment and I can tell you, I'm not giving in without a fight!

>

> So more waiting, to hear the second opinion on the biopsy, and for the

> neuro to call the rheumy and then to start on meds ... which ones I

> still don't know, but probably methotrexate or prednisone.

>

> You all know the drill ...

>

> >From the second OV the doc knows that I research things so he didn't

> seem surprised that I already knew so much. He actually didn't say

> anything that I haven't already learned from reading your discussions

> and from google searches. What I most need now--the DX--can't be found

> on google!

>

> So now we go back to that old past time ... waiting for the phone to

> ring with the doc on the line!

>

> Tenayahh

>

>

> > Sue,

> > I am so glad you are going to try the IVIg. And your dad getting a

> power

> > chair-woohoo! Now you and him can go for walks together. Isn't it

> a great

> > feeling?? If I started anything, I am glad it is that! Take care

> of

> > yourself and your dad. Good news about your son's funeral license.

> I know

> > it was some time ago but success stories are great to hear anytime.

> >

> > Keep us posted on the IVIg. I am going to have mine set up soon

> too. He did

> > tell me that there really is no need to go into the hospital for it.

> I will

> > be at the clinic and the doctors are right across the hallway. He

> actually

> > said he would rather me be there then the doctor can just run across

> the

> > hallway to check on me rather than across the street and through the

> > hospital. I also asked him about changing from a PM to an IBM dx

> and he said

> > that is not something that happens. What happens, probably is that

> the

> > biopsy was 'dirty' and not read properly the first time and they

> actually

> > missed the inclusions. He is ordering a report of my original

> biopsy to make

> > sure but he is confident they were right with the PM since it did go

> to UCLA

> > pathology for biopsy.

> >

> > Anyway,

> > Have a great holiday weekend...

> >

> > Zanna

>

>

>

>

>

[Guest guest]

> Hi, Tenayahh. I sure hope they can give you a definitive dx this

time around. It's a shame that you have more waiting to do, but I'm

sure you're an old pro at it by now. LOL.

Thanks, Dawn. I know from reading your posts that you are

unfortunately one of the world's experts in waiting right now. Sure

do hope that your financial worries find a good and lasting solution,

soon.

We should all add the middle name Patience to our names!

I've been thinking about the finger flexor weakness that my doc is so

sure of ... and how I didn't really grip as hard as possible because I

didn't want to slice his finger with my fingernails! Guess I should

have told him that ... but it's a small thing. The slides and meds

will eventually tell.

We'll all be anxiously awaiting your

news.

> Good luck (if there's any luck involved with Myositis). LOL.

For almost a year now I've been telling myself, " It could be worse. "

It was so reassuring when the docs ruled out the really bad stuff like

ALS, MS, and Parkinson's. Not that myositis isn't bad and can't be

devastating. But at least--maybe--we have a little more time than with

some of the other NM diseases.

So maybe that's luck?<g>

Tenayahh

[Guest guest]

> Hi, Tenayahh. I sure hope they can give you a definitive dx this

time around. It's a shame that you have more waiting to do, but I'm

sure you're an old pro at it by now. LOL.

Thanks, Dawn. I know from reading your posts that you are

unfortunately one of the world's experts in waiting right now. Sure

do hope that your financial worries find a good and lasting solution,

soon.

We should all add the middle name Patience to our names!

I've been thinking about the finger flexor weakness that my doc is so

sure of ... and how I didn't really grip as hard as possible because I

didn't want to slice his finger with my fingernails! Guess I should

have told him that ... but it's a small thing. The slides and meds

will eventually tell.

We'll all be anxiously awaiting your

news.

> Good luck (if there's any luck involved with Myositis). LOL.

For almost a year now I've been telling myself, " It could be worse. "

It was so reassuring when the docs ruled out the really bad stuff like

ALS, MS, and Parkinson's. Not that myositis isn't bad and can't be

devastating. But at least--maybe--we have a little more time than with

some of the other NM diseases.

So maybe that's luck?<g>

Tenayahh

[Guest guest]

> Hi, Tenayahh. I sure hope they can give you a definitive dx this

time around. It's a shame that you have more waiting to do, but I'm

sure you're an old pro at it by now. LOL.

Thanks, Dawn. I know from reading your posts that you are

unfortunately one of the world's experts in waiting right now. Sure

do hope that your financial worries find a good and lasting solution,

soon.

We should all add the middle name Patience to our names!

I've been thinking about the finger flexor weakness that my doc is so

sure of ... and how I didn't really grip as hard as possible because I

didn't want to slice his finger with my fingernails! Guess I should

have told him that ... but it's a small thing. The slides and meds

will eventually tell.

We'll all be anxiously awaiting your

news.

> Good luck (if there's any luck involved with Myositis). LOL.

For almost a year now I've been telling myself, " It could be worse. "

It was so reassuring when the docs ruled out the really bad stuff like

ALS, MS, and Parkinson's. Not that myositis isn't bad and can't be

devastating. But at least--maybe--we have a little more time than with

some of the other NM diseases.

So maybe that's luck?<g>

Tenayahh

[Guest guest]

Hi Tenayahh,

I am Ed#2 and I was first dx with PM in 1993 went on the prednisone and

Imuran treatment process. I couldn't take the Imuran so it was changed to

Methotrexate. This past May I was dx'd with IBM, I had been falling for no

reason for about the past year. I thought it was just being clumsy. I would

just be walking and the next thing I knew I was dopwn on the ground. My

rheum after I told her about this problem had me get another biopsy and this

one showed it was IBM. I am going to O.T. because of problems with my

fingers and hands. They have given me some simple exercises to do each day

to keep the mobility in my haands. I have trouble making a fist with my left

hand. These exercises are helping me keep movement and strengthen my fingers

and hands. I also have read that as long as I keep active, with IBM it is

slow progressing and I can delay any of the effects that are related to

this. I hope that they can give you a definite answer and that they work

with you on developing a rehab program to live with this. It is not the end

of the world but with all the friends here we can tackle any problem that is

thrown at us. Best of luck.

Ed #2

>

>Reply-To: OurMyositis

>To: OurMyositis

>Subject: Re: Neuro doctor appt.------IVIG?

>Date: Sat, 31 Aug 2002 15:31:25 -0000

>

>Zanna,

>

>So happy to hear that you are going to try a new treatment. Sure hope

>it works for you! Remember while you're sitting there attached to IVs

>for hours and feeling like you should be running after kids or

>something, that there are a lot of people pulling for you!

>

>Meanwhile, on Wednesday I delivered my biopsy slides to the neuro at

>UCSF, who said he would go over them very closely with the pathologist

>on Friday. He said my symptoms most closely match IBM, except for my

>age. Silly man kept referring to me as " young " at 51!<g> He said in

>practice he sees an equal number of men and women with IBM.

>

>The UC pathologist told me on the phone that he didn't see

>anything in the slides or electron microscopy that would lead him to

>look further for IBM ... no rimmed vacuoles or inclusion bodies. But

>he also didn't have special instructions to look for it.

>

>The neuro explained that patients are often DXed with PM in the

>absence of rimmed vacuoles, etc., but if they don't respond to

>treatment, then IBM is suspected. The problem is that the vacuoles or

>rods might not be in every muscle, so it's trial and error, whether

>they show up in a particular biopsy.

>

>He said that DM,PM, and IBM all have very different causes, even

>though the symptoms are so similar (except for the DM rashes.)

>

>He really seems to be leaning toward IBM because of my finger flexor

>weakness and forearm muscle atrophy. But he also wants to try

>treatment and I can tell you, I'm not giving in without a fight!

>

>So more waiting, to hear the second opinion on the biopsy, and for the

>neuro to call the rheumy and then to start on meds ... which ones I

>still don't know, but probably methotrexate or prednisone.

>

>You all know the drill ...

>

>From the second OV the doc knows that I research things so he didn't

>seem surprised that I already knew so much. He actually didn't say

>anything that I haven't already learned from reading your discussions

>and from google searches. What I most need now--the DX--can't be found

>on google!

>

>So now we go back to that old past time ... waiting for the phone to

>ring with the doc on the line!

>

>Tenayahh

>

>

>

>

> > Sue,

> > I am so glad you are going to try the IVIg. And your dad getting a

>power

> > chair-woohoo! Now you and him can go for walks together. Isn't it

>a great

> > feeling?? If I started anything, I am glad it is that! Take care

>of

> > yourself and your dad. Good news about your son's funeral license.

> I know

> > it was some time ago but success stories are great to hear anytime.

> >

> > Keep us posted on the IVIg. I am going to have mine set up soon

>too. He did

> > tell me that there really is no need to go into the hospital for it.

> I will

> > be at the clinic and the doctors are right across the hallway. He

>actually

> > said he would rather me be there then the doctor can just run across

>the

> > hallway to check on me rather than across the street and through the

> > hospital. I also asked him about changing from a PM to an IBM dx

>and he said

> > that is not something that happens. What happens, probably is that

>the

> > biopsy was 'dirty' and not read properly the first time and they

>actually

> > missed the inclusions. He is ordering a report of my original

>biopsy to make

> > sure but he is confident they were right with the PM since it did go

>to UCLA

> > pathology for biopsy.

> >

> > Anyway,

> > Have a great holiday weekend...

> >

> > Zanna

>

_________________________________________________________________

Chat with friends online, try MSN Messenger: http://messenger.msn.com

[Guest guest]

Hi Tenayahh,

I am Ed#2 and I was first dx with PM in 1993 went on the prednisone and

Imuran treatment process. I couldn't take the Imuran so it was changed to

Methotrexate. This past May I was dx'd with IBM, I had been falling for no

reason for about the past year. I thought it was just being clumsy. I would

just be walking and the next thing I knew I was dopwn on the ground. My

rheum after I told her about this problem had me get another biopsy and this

one showed it was IBM. I am going to O.T. because of problems with my

fingers and hands. They have given me some simple exercises to do each day

to keep the mobility in my haands. I have trouble making a fist with my left

hand. These exercises are helping me keep movement and strengthen my fingers

and hands. I also have read that as long as I keep active, with IBM it is

slow progressing and I can delay any of the effects that are related to

this. I hope that they can give you a definite answer and that they work

with you on developing a rehab program to live with this. It is not the end

of the world but with all the friends here we can tackle any problem that is

thrown at us. Best of luck.

Ed #2

>

>Reply-To: OurMyositis

>To: OurMyositis

>Subject: Re: Neuro doctor appt.------IVIG?

>Date: Sat, 31 Aug 2002 15:31:25 -0000

>

>Zanna,

>

>So happy to hear that you are going to try a new treatment. Sure hope

>it works for you! Remember while you're sitting there attached to IVs

>for hours and feeling like you should be running after kids or

>something, that there are a lot of people pulling for you!

>

>Meanwhile, on Wednesday I delivered my biopsy slides to the neuro at

>UCSF, who said he would go over them very closely with the pathologist

>on Friday. He said my symptoms most closely match IBM, except for my

>age. Silly man kept referring to me as " young " at 51!<g> He said in

>practice he sees an equal number of men and women with IBM.

>

>The UC pathologist told me on the phone that he didn't see

>anything in the slides or electron microscopy that would lead him to

>look further for IBM ... no rimmed vacuoles or inclusion bodies. But

>he also didn't have special instructions to look for it.

>

>The neuro explained that patients are often DXed with PM in the

>absence of rimmed vacuoles, etc., but if they don't respond to

>treatment, then IBM is suspected. The problem is that the vacuoles or

>rods might not be in every muscle, so it's trial and error, whether

>they show up in a particular biopsy.

>

>He said that DM,PM, and IBM all have very different causes, even

>though the symptoms are so similar (except for the DM rashes.)

>

>He really seems to be leaning toward IBM because of my finger flexor

>weakness and forearm muscle atrophy. But he also wants to try

>treatment and I can tell you, I'm not giving in without a fight!

>

>So more waiting, to hear the second opinion on the biopsy, and for the

>neuro to call the rheumy and then to start on meds ... which ones I

>still don't know, but probably methotrexate or prednisone.

>

>You all know the drill ...

>

>From the second OV the doc knows that I research things so he didn't

>seem surprised that I already knew so much. He actually didn't say

>anything that I haven't already learned from reading your discussions

>and from google searches. What I most need now--the DX--can't be found

>on google!

>

>So now we go back to that old past time ... waiting for the phone to

>ring with the doc on the line!

>

>Tenayahh

>

>

>

>

> > Sue,

> > I am so glad you are going to try the IVIg. And your dad getting a

>power

> > chair-woohoo! Now you and him can go for walks together. Isn't it

>a great

> > feeling?? If I started anything, I am glad it is that! Take care

>of

> > yourself and your dad. Good news about your son's funeral license.

> I know

> > it was some time ago but success stories are great to hear anytime.

> >

> > Keep us posted on the IVIg. I am going to have mine set up soon

>too. He did

> > tell me that there really is no need to go into the hospital for it.

> I will

> > be at the clinic and the doctors are right across the hallway. He

>actually

> > said he would rather me be there then the doctor can just run across

>the

> > hallway to check on me rather than across the street and through the

> > hospital. I also asked him about changing from a PM to an IBM dx

>and he said

> > that is not something that happens. What happens, probably is that

>the

> > biopsy was 'dirty' and not read properly the first time and they

>actually

> > missed the inclusions. He is ordering a report of my original

>biopsy to make

> > sure but he is confident they were right with the PM since it did go

>to UCLA

> > pathology for biopsy.

> >

> > Anyway,

> > Have a great holiday weekend...

> >

> > Zanna

>

_________________________________________________________________

Chat with friends online, try MSN Messenger: http://messenger.msn.com

[Guest guest]

Hi Tenayahh,

I am Ed#2 and I was first dx with PM in 1993 went on the prednisone and

Imuran treatment process. I couldn't take the Imuran so it was changed to

Methotrexate. This past May I was dx'd with IBM, I had been falling for no

reason for about the past year. I thought it was just being clumsy. I would

just be walking and the next thing I knew I was dopwn on the ground. My

rheum after I told her about this problem had me get another biopsy and this

one showed it was IBM. I am going to O.T. because of problems with my

fingers and hands. They have given me some simple exercises to do each day

to keep the mobility in my haands. I have trouble making a fist with my left

hand. These exercises are helping me keep movement and strengthen my fingers

and hands. I also have read that as long as I keep active, with IBM it is

slow progressing and I can delay any of the effects that are related to

this. I hope that they can give you a definite answer and that they work

with you on developing a rehab program to live with this. It is not the end

of the world but with all the friends here we can tackle any problem that is

thrown at us. Best of luck.

Ed #2

>

>Reply-To: OurMyositis

>To: OurMyositis

>Subject: Re: Neuro doctor appt.------IVIG?

>Date: Sat, 31 Aug 2002 15:31:25 -0000

>

>Zanna,

>

>So happy to hear that you are going to try a new treatment. Sure hope

>it works for you! Remember while you're sitting there attached to IVs

>for hours and feeling like you should be running after kids or

>something, that there are a lot of people pulling for you!

>

>Meanwhile, on Wednesday I delivered my biopsy slides to the neuro at

>UCSF, who said he would go over them very closely with the pathologist

>on Friday. He said my symptoms most closely match IBM, except for my

>age. Silly man kept referring to me as " young " at 51!<g> He said in

>practice he sees an equal number of men and women with IBM.

>

>The UC pathologist told me on the phone that he didn't see

>anything in the slides or electron microscopy that would lead him to

>look further for IBM ... no rimmed vacuoles or inclusion bodies. But

>he also didn't have special instructions to look for it.

>

>The neuro explained that patients are often DXed with PM in the

>absence of rimmed vacuoles, etc., but if they don't respond to

>treatment, then IBM is suspected. The problem is that the vacuoles or

>rods might not be in every muscle, so it's trial and error, whether

>they show up in a particular biopsy.

>

>He said that DM,PM, and IBM all have very different causes, even

>though the symptoms are so similar (except for the DM rashes.)

>

>He really seems to be leaning toward IBM because of my finger flexor

>weakness and forearm muscle atrophy. But he also wants to try

>treatment and I can tell you, I'm not giving in without a fight!

>

>So more waiting, to hear the second opinion on the biopsy, and for the

>neuro to call the rheumy and then to start on meds ... which ones I

>still don't know, but probably methotrexate or prednisone.

>

>You all know the drill ...

>

>From the second OV the doc knows that I research things so he didn't

>seem surprised that I already knew so much. He actually didn't say

>anything that I haven't already learned from reading your discussions

>and from google searches. What I most need now--the DX--can't be found

>on google!

>

>So now we go back to that old past time ... waiting for the phone to

>ring with the doc on the line!

>

>Tenayahh

>

>

>

>

> > Sue,

> > I am so glad you are going to try the IVIg. And your dad getting a

>power

> > chair-woohoo! Now you and him can go for walks together. Isn't it

>a great

> > feeling?? If I started anything, I am glad it is that! Take care

>of

> > yourself and your dad. Good news about your son's funeral license.

> I know

> > it was some time ago but success stories are great to hear anytime.

> >

> > Keep us posted on the IVIg. I am going to have mine set up soon

>too. He did

> > tell me that there really is no need to go into the hospital for it.

> I will

> > be at the clinic and the doctors are right across the hallway. He

>actually

> > said he would rather me be there then the doctor can just run across

>the

> > hallway to check on me rather than across the street and through the

> > hospital. I also asked him about changing from a PM to an IBM dx

>and he said

> > that is not something that happens. What happens, probably is that

>the

> > biopsy was 'dirty' and not read properly the first time and they

>actually

> > missed the inclusions. He is ordering a report of my original

>biopsy to make

> > sure but he is confident they were right with the PM since it did go

>to UCLA

> > pathology for biopsy.

> >

> > Anyway,

> > Have a great holiday weekend...

> >

> > Zanna

>

_________________________________________________________________

Chat with friends online, try MSN Messenger: http://messenger.msn.com

[Guest guest]

So true, Tenayahh. There was about a week where I was thinking I had cancer

and I was THRILLED when it came back that I just had PM and SS. LOL. My GP

was concerned because my CPK's just wouldn't go down with the meds they were

giving me and she said they would have to check to see if there was any

cancer. Well, when a Dr. uses that word around you, you just go crazy (at

least I did). I think I cried for a week and grieved for my children. It

was awful.

Dawn

PS.....Any news from Annette. I would love to hear how she made out.

tenayahh wrote:

>

> > Hi, Tenayahh. I sure hope they can give you a definitive dx this

> time around. It's a shame that you have more waiting to do, but I'm

> sure you're an old pro at it by now. LOL.

>

> Thanks, Dawn. I know from reading your posts that you are

> unfortunately one of the world's experts in waiting right now. Sure

> do hope that your financial worries find a good and lasting solution,

> soon.

>

> We should all add the middle name Patience to our names!

>

> I've been thinking about the finger flexor weakness that my doc is so

> sure of ... and how I didn't really grip as hard as possible because I

> didn't want to slice his finger with my fingernails! Guess I should

> have told him that ... but it's a small thing. The slides and meds

> will eventually tell.

>

> We'll all be anxiously awaiting your

> news.

> > Good luck (if there's any luck involved with Myositis). LOL.

>

> For almost a year now I've been telling myself, " It could be worse. "

> It was so reassuring when the docs ruled out the really bad stuff like

> ALS, MS, and Parkinson's. Not that myositis isn't bad and can't be

> devastating. But at least--maybe--we have a little more time than with

> some of the other NM diseases.

>

> So maybe that's luck?<g>

>

> Tenayahh

>

>

>

>

>

[Guest guest]

So true, Tenayahh. There was about a week where I was thinking I had cancer

and I was THRILLED when it came back that I just had PM and SS. LOL. My GP

was concerned because my CPK's just wouldn't go down with the meds they were

giving me and she said they would have to check to see if there was any

cancer. Well, when a Dr. uses that word around you, you just go crazy (at

least I did). I think I cried for a week and grieved for my children. It

was awful.

Dawn

PS.....Any news from Annette. I would love to hear how she made out.

tenayahh wrote:

>

> > Hi, Tenayahh. I sure hope they can give you a definitive dx this

> time around. It's a shame that you have more waiting to do, but I'm

> sure you're an old pro at it by now. LOL.

>

> Thanks, Dawn. I know from reading your posts that you are

> unfortunately one of the world's experts in waiting right now. Sure

> do hope that your financial worries find a good and lasting solution,

> soon.

>

> We should all add the middle name Patience to our names!

>

> I've been thinking about the finger flexor weakness that my doc is so

> sure of ... and how I didn't really grip as hard as possible because I

> didn't want to slice his finger with my fingernails! Guess I should

> have told him that ... but it's a small thing. The slides and meds

> will eventually tell.

>

> We'll all be anxiously awaiting your

> news.

> > Good luck (if there's any luck involved with Myositis). LOL.

>

> For almost a year now I've been telling myself, " It could be worse. "

> It was so reassuring when the docs ruled out the really bad stuff like

> ALS, MS, and Parkinson's. Not that myositis isn't bad and can't be

> devastating. But at least--maybe--we have a little more time than with

> some of the other NM diseases.

>

> So maybe that's luck?<g>

>

> Tenayahh

>

>

>

>

>

[Guest guest]

So true, Tenayahh. There was about a week where I was thinking I had cancer

and I was THRILLED when it came back that I just had PM and SS. LOL. My GP

was concerned because my CPK's just wouldn't go down with the meds they were

giving me and she said they would have to check to see if there was any

cancer. Well, when a Dr. uses that word around you, you just go crazy (at

least I did). I think I cried for a week and grieved for my children. It

was awful.

Dawn

PS.....Any news from Annette. I would love to hear how she made out.

tenayahh wrote:

>

> > Hi, Tenayahh. I sure hope they can give you a definitive dx this

> time around. It's a shame that you have more waiting to do, but I'm

> sure you're an old pro at it by now. LOL.

>

> Thanks, Dawn. I know from reading your posts that you are

> unfortunately one of the world's experts in waiting right now. Sure

> do hope that your financial worries find a good and lasting solution,

> soon.

>

> We should all add the middle name Patience to our names!

>

> I've been thinking about the finger flexor weakness that my doc is so

> sure of ... and how I didn't really grip as hard as possible because I

> didn't want to slice his finger with my fingernails! Guess I should

> have told him that ... but it's a small thing. The slides and meds

> will eventually tell.

>

> We'll all be anxiously awaiting your

> news.

> > Good luck (if there's any luck involved with Myositis). LOL.

>

> For almost a year now I've been telling myself, " It could be worse. "

> It was so reassuring when the docs ruled out the really bad stuff like

> ALS, MS, and Parkinson's. Not that myositis isn't bad and can't be

> devastating. But at least--maybe--we have a little more time than with

> some of the other NM diseases.

>

> So maybe that's luck?<g>

>

> Tenayahh

>

>

>

>

>

[Guest guest]

Hi, Ed. Can you tell me exactly what O.T. is? My PTherapist suggested I got to

OT and my Dr. sent in a referral. My 1st appt. is on Thurs., but not sure if

I'm going to bother with it. What do they do there? What exactly is it for?

Thanks.

Dawn

Ed Reimer wrote:

> Hi Tenayahh,

> I am Ed#2 and I was first dx with PM in 1993 went on the prednisone and

> Imuran treatment process. I couldn't take the Imuran so it was changed to

> Methotrexate. This past May I was dx'd with IBM, I had been falling for no

> reason for about the past year. I thought it was just being clumsy. I would

> just be walking and the next thing I knew I was dopwn on the ground. My

> rheum after I told her about this problem had me get another biopsy and this

> one showed it was IBM. I am going to O.T. because of problems with my

> fingers and hands. They have given me some simple exercises to do each day

> to keep the mobility in my haands. I have trouble making a fist with my left

> hand. These exercises are helping me keep movement and strengthen my fingers

> and hands. I also have read that as long as I keep active, with IBM it is

> slow progressing and I can delay any of the effects that are related to

> this. I hope that they can give you a definite answer and that they work

> with you on developing a rehab program to live with this. It is not the end

> of the world but with all the friends here we can tackle any problem that is

> thrown at us. Best of luck.

>

> Ed #2

>

> >

> >Reply-To: OurMyositis

> >To: OurMyositis

> >Subject: Re: Neuro doctor appt.------IVIG?

> >Date: Sat, 31 Aug 2002 15:31:25 -0000

> >

> >Zanna,

> >

> >So happy to hear that you are going to try a new treatment. Sure hope

> >it works for you! Remember while you're sitting there attached to IVs

> >for hours and feeling like you should be running after kids or

> >something, that there are a lot of people pulling for you!

> >

> >Meanwhile, on Wednesday I delivered my biopsy slides to the neuro at

> >UCSF, who said he would go over them very closely with the pathologist

> >on Friday. He said my symptoms most closely match IBM, except for my

> >age. Silly man kept referring to me as " young " at 51!<g> He said in

> >practice he sees an equal number of men and women with IBM.

> >

> >The UC pathologist told me on the phone that he didn't see

> >anything in the slides or electron microscopy that would lead him to

> >look further for IBM ... no rimmed vacuoles or inclusion bodies. But

> >he also didn't have special instructions to look for it.

> >

> >The neuro explained that patients are often DXed with PM in the

> >absence of rimmed vacuoles, etc., but if they don't respond to

> >treatment, then IBM is suspected. The problem is that the vacuoles or

> >rods might not be in every muscle, so it's trial and error, whether

> >they show up in a particular biopsy.

> >

> >He said that DM,PM, and IBM all have very different causes, even

> >though the symptoms are so similar (except for the DM rashes.)

> >

> >He really seems to be leaning toward IBM because of my finger flexor

> >weakness and forearm muscle atrophy. But he also wants to try

> >treatment and I can tell you, I'm not giving in without a fight!

> >

> >So more waiting, to hear the second opinion on the biopsy, and for the

> >neuro to call the rheumy and then to start on meds ... which ones I

> >still don't know, but probably methotrexate or prednisone.

> >

> >You all know the drill ...

> >

> >From the second OV the doc knows that I research things so he didn't

> >seem surprised that I already knew so much. He actually didn't say

> >anything that I haven't already learned from reading your discussions

> >and from google searches. What I most need now--the DX--can't be found

> >on google!

> >

> >So now we go back to that old past time ... waiting for the phone to

> >ring with the doc on the line!

> >

> >Tenayahh

> >

> >

> >

> >

> > > Sue,

> > > I am so glad you are going to try the IVIg. And your dad getting a

> >power

> > > chair-woohoo! Now you and him can go for walks together. Isn't it

> >a great

> > > feeling?? If I started anything, I am glad it is that! Take care

> >of

> > > yourself and your dad. Good news about your son's funeral license.

> > I know

> > > it was some time ago but success stories are great to hear anytime.

> > >

> > > Keep us posted on the IVIg. I am going to have mine set up soon

> >too. He did

> > > tell me that there really is no need to go into the hospital for it.

> > I will

> > > be at the clinic and the doctors are right across the hallway. He

> >actually

> > > said he would rather me be there then the doctor can just run across

> >the

> > > hallway to check on me rather than across the street and through the

> > > hospital. I also asked him about changing from a PM to an IBM dx

> >and he said

> > > that is not something that happens. What happens, probably is that

> >the

> > > biopsy was 'dirty' and not read properly the first time and they

> >actually

> > > missed the inclusions. He is ordering a report of my original

> >biopsy to make

> > > sure but he is confident they were right with the PM since it did go

> >to UCLA

> > > pathology for biopsy.

> > >

> > > Anyway,

> > > Have a great holiday weekend...

> > >

> > > Zanna

> >

>

> _________________________________________________________________

> Chat with friends online, try MSN Messenger: http://messenger.msn.com

>

>

>

>

>

[Guest guest]

Hi, Ed. Can you tell me exactly what O.T. is? My PTherapist suggested I got to

OT and my Dr. sent in a referral. My 1st appt. is on Thurs., but not sure if

I'm going to bother with it. What do they do there? What exactly is it for?

Thanks.

Dawn

Ed Reimer wrote:

> Hi Tenayahh,

> I am Ed#2 and I was first dx with PM in 1993 went on the prednisone and

> Imuran treatment process. I couldn't take the Imuran so it was changed to

> Methotrexate. This past May I was dx'd with IBM, I had been falling for no

> reason for about the past year. I thought it was just being clumsy. I would

> just be walking and the next thing I knew I was dopwn on the ground. My

> rheum after I told her about this problem had me get another biopsy and this

> one showed it was IBM. I am going to O.T. because of problems with my

> fingers and hands. They have given me some simple exercises to do each day

> to keep the mobility in my haands. I have trouble making a fist with my left

> hand. These exercises are helping me keep movement and strengthen my fingers

> and hands. I also have read that as long as I keep active, with IBM it is

> slow progressing and I can delay any of the effects that are related to

> this. I hope that they can give you a definite answer and that they work

> with you on developing a rehab program to live with this. It is not the end

> of the world but with all the friends here we can tackle any problem that is

> thrown at us. Best of luck.

>

> Ed #2

>

> >

> >Reply-To: OurMyositis

> >To: OurMyositis

> >Subject: Re: Neuro doctor appt.------IVIG?

> >Date: Sat, 31 Aug 2002 15:31:25 -0000

> >

> >Zanna,

> >

> >So happy to hear that you are going to try a new treatment. Sure hope

> >it works for you! Remember while you're sitting there attached to IVs

> >for hours and feeling like you should be running after kids or

> >something, that there are a lot of people pulling for you!

> >

> >Meanwhile, on Wednesday I delivered my biopsy slides to the neuro at

> >UCSF, who said he would go over them very closely with the pathologist

> >on Friday. He said my symptoms most closely match IBM, except for my

> >age. Silly man kept referring to me as " young " at 51!<g> He said in

> >practice he sees an equal number of men and women with IBM.

> >

> >The UC pathologist told me on the phone that he didn't see

> >anything in the slides or electron microscopy that would lead him to

> >look further for IBM ... no rimmed vacuoles or inclusion bodies. But

> >he also didn't have special instructions to look for it.

> >

> >The neuro explained that patients are often DXed with PM in the

> >absence of rimmed vacuoles, etc., but if they don't respond to

> >treatment, then IBM is suspected. The problem is that the vacuoles or

> >rods might not be in every muscle, so it's trial and error, whether

> >they show up in a particular biopsy.

> >

> >He said that DM,PM, and IBM all have very different causes, even

> >though the symptoms are so similar (except for the DM rashes.)

> >

> >He really seems to be leaning toward IBM because of my finger flexor

> >weakness and forearm muscle atrophy. But he also wants to try

> >treatment and I can tell you, I'm not giving in without a fight!

> >

> >So more waiting, to hear the second opinion on the biopsy, and for the

> >neuro to call the rheumy and then to start on meds ... which ones I

> >still don't know, but probably methotrexate or prednisone.

> >

> >You all know the drill ...

> >

> >From the second OV the doc knows that I research things so he didn't

> >seem surprised that I already knew so much. He actually didn't say

> >anything that I haven't already learned from reading your discussions

> >and from google searches. What I most need now--the DX--can't be found

> >on google!

> >

> >So now we go back to that old past time ... waiting for the phone to

> >ring with the doc on the line!

> >

> >Tenayahh

> >

> >

> >

> >

> > > Sue,

> > > I am so glad you are going to try the IVIg. And your dad getting a

> >power

> > > chair-woohoo! Now you and him can go for walks together. Isn't it

> >a great

> > > feeling?? If I started anything, I am glad it is that! Take care

> >of

> > > yourself and your dad. Good news about your son's funeral license.

> > I know

> > > it was some time ago but success stories are great to hear anytime.

> > >

> > > Keep us posted on the IVIg. I am going to have mine set up soon

> >too. He did

> > > tell me that there really is no need to go into the hospital for it.

> > I will

> > > be at the clinic and the doctors are right across the hallway. He

> >actually

> > > said he would rather me be there then the doctor can just run across

> >the

> > > hallway to check on me rather than across the street and through the

> > > hospital. I also asked him about changing from a PM to an IBM dx

> >and he said

> > > that is not something that happens. What happens, probably is that

> >the

> > > biopsy was 'dirty' and not read properly the first time and they

> >actually

> > > missed the inclusions. He is ordering a report of my original

> >biopsy to make

> > > sure but he is confident they were right with the PM since it did go

> >to UCLA

> > > pathology for biopsy.

> > >

> > > Anyway,

> > > Have a great holiday weekend...

> > >

> > > Zanna

> >

>

> _________________________________________________________________

> Chat with friends online, try MSN Messenger: http://messenger.msn.com

>

>

>

>

>

[Guest guest]

Hi, Ed. Can you tell me exactly what O.T. is? My PTherapist suggested I got to

OT and my Dr. sent in a referral. My 1st appt. is on Thurs., but not sure if

I'm going to bother with it. What do they do there? What exactly is it for?

Thanks.

Dawn

Ed Reimer wrote:

> Hi Tenayahh,

> I am Ed#2 and I was first dx with PM in 1993 went on the prednisone and

> Imuran treatment process. I couldn't take the Imuran so it was changed to

> Methotrexate. This past May I was dx'd with IBM, I had been falling for no

> reason for about the past year. I thought it was just being clumsy. I would

> just be walking and the next thing I knew I was dopwn on the ground. My

> rheum after I told her about this problem had me get another biopsy and this

> one showed it was IBM. I am going to O.T. because of problems with my

> fingers and hands. They have given me some simple exercises to do each day

> to keep the mobility in my haands. I have trouble making a fist with my left

> hand. These exercises are helping me keep movement and strengthen my fingers

> and hands. I also have read that as long as I keep active, with IBM it is

> slow progressing and I can delay any of the effects that are related to

> this. I hope that they can give you a definite answer and that they work

> with you on developing a rehab program to live with this. It is not the end

> of the world but with all the friends here we can tackle any problem that is

> thrown at us. Best of luck.

>

> Ed #2

>

> >

> >Reply-To: OurMyositis

> >To: OurMyositis

> >Subject: Re: Neuro doctor appt.------IVIG?

> >Date: Sat, 31 Aug 2002 15:31:25 -0000

> >

> >Zanna,

> >

> >So happy to hear that you are going to try a new treatment. Sure hope

> >it works for you! Remember while you're sitting there attached to IVs

> >for hours and feeling like you should be running after kids or

> >something, that there are a lot of people pulling for you!

> >

> >Meanwhile, on Wednesday I delivered my biopsy slides to the neuro at

> >UCSF, who said he would go over them very closely with the pathologist

> >on Friday. He said my symptoms most closely match IBM, except for my

> >age. Silly man kept referring to me as " young " at 51!<g> He said in

> >practice he sees an equal number of men and women with IBM.

> >

> >The UC pathologist told me on the phone that he didn't see

> >anything in the slides or electron microscopy that would lead him to

> >look further for IBM ... no rimmed vacuoles or inclusion bodies. But

> >he also didn't have special instructions to look for it.

> >

> >The neuro explained that patients are often DXed with PM in the

> >absence of rimmed vacuoles, etc., but if they don't respond to

> >treatment, then IBM is suspected. The problem is that the vacuoles or

> >rods might not be in every muscle, so it's trial and error, whether

> >they show up in a particular biopsy.

> >

> >He said that DM,PM, and IBM all have very different causes, even

> >though the symptoms are so similar (except for the DM rashes.)

> >

> >He really seems to be leaning toward IBM because of my finger flexor

> >weakness and forearm muscle atrophy. But he also wants to try

> >treatment and I can tell you, I'm not giving in without a fight!

> >

> >So more waiting, to hear the second opinion on the biopsy, and for the

> >neuro to call the rheumy and then to start on meds ... which ones I

> >still don't know, but probably methotrexate or prednisone.

> >

> >You all know the drill ...

> >

> >From the second OV the doc knows that I research things so he didn't

> >seem surprised that I already knew so much. He actually didn't say

> >anything that I haven't already learned from reading your discussions

> >and from google searches. What I most need now--the DX--can't be found

> >on google!

> >

> >So now we go back to that old past time ... waiting for the phone to

> >ring with the doc on the line!

> >

> >Tenayahh

> >

> >

> >

> >

> > > Sue,

> > > I am so glad you are going to try the IVIg. And your dad getting a

> >power

> > > chair-woohoo! Now you and him can go for walks together. Isn't it

> >a great

> > > feeling?? If I started anything, I am glad it is that! Take care

> >of

> > > yourself and your dad. Good news about your son's funeral license.

> > I know

> > > it was some time ago but success stories are great to hear anytime.

> > >

> > > Keep us posted on the IVIg. I am going to have mine set up soon

> >too. He did

> > > tell me that there really is no need to go into the hospital for it.

> > I will

> > > be at the clinic and the doctors are right across the hallway. He

> >actually

> > > said he would rather me be there then the doctor can just run across

> >the

> > > hallway to check on me rather than across the street and through the

> > > hospital. I also asked him about changing from a PM to an IBM dx

> >and he said

> > > that is not something that happens. What happens, probably is that

> >the

> > > biopsy was 'dirty' and not read properly the first time and they

> >actually

> > > missed the inclusions. He is ordering a report of my original

> >biopsy to make

> > > sure but he is confident they were right with the PM since it did go

> >to UCLA

> > > pathology for biopsy.

> > >

> > > Anyway,

> > > Have a great holiday weekend...

> > >

> > > Zanna

> >

>

> _________________________________________________________________

> Chat with friends online, try MSN Messenger: http://messenger.msn.com

>

>

>

>

>

[Guest guest]

Hi Dawn,

The O.T. is Occupational Therapy with my IBM this affects the arms and

fingers so I have some exercises to do to keep the flexibility and grip in

my hands and fingers. I also am using small weights to keep the upper arm

strength. I also a going to P.T. because I had my left rotator cuff repaired

due to a bone spur from a calcium deposit. I am almost finished with my P.T.

and I have good range of motion in my arm. I had my right shoulder done 2

yrs ago also due to a bone spur. I am also doing exercises for my lower legs

to maintain what muscle I still have. Hope this answers any concerns you

might have.

Ed #2

>

>Reply-To: OurMyositis

>To: OurMyositis

>Subject: Re: Neuro doctor appt.------IVIG?

>Date: Sun, 01 Sep 2002 12:52:47 -0300

>

>Hi, Ed. Can you tell me exactly what O.T. is? My PTherapist suggested I

>got to

>OT and my Dr. sent in a referral. My 1st appt. is on Thurs., but not sure

>if

>I'm going to bother with it. What do they do there? What exactly is it

>for?

>Thanks.

>

>Dawn

>

>Ed Reimer wrote:

>

> > Hi Tenayahh,

> > I am Ed#2 and I was first dx with PM in 1993 went on the prednisone and

> > Imuran treatment process. I couldn't take the Imuran so it was changed

>to

> > Methotrexate. This past May I was dx'd with IBM, I had been falling for

>no

> > reason for about the past year. I thought it was just being clumsy. I

>would

> > just be walking and the next thing I knew I was dopwn on the ground. My

> > rheum after I told her about this problem had me get another biopsy and

>this

> > one showed it was IBM. I am going to O.T. because of problems with my

> > fingers and hands. They have given me some simple exercises to do each

>day

> > to keep the mobility in my haands. I have trouble making a fist with my

>left

> > hand. These exercises are helping me keep movement and strengthen my

>fingers

> > and hands. I also have read that as long as I keep active, with IBM it

>is

> > slow progressing and I can delay any of the effects that are related to

> > this. I hope that they can give you a definite answer and that they work

> > with you on developing a rehab program to live with this. It is not the

>end

> > of the world but with all the friends here we can tackle any problem

>that is

> > thrown at us. Best of luck.

> >

> > Ed #2

> >

> > >

> > >Reply-To: OurMyositis

> > >To: OurMyositis

> > >Subject: Re: Neuro doctor appt.------IVIG?

> > >Date: Sat, 31 Aug 2002 15:31:25 -0000

> > >

> > >Zanna,

> > >

> > >So happy to hear that you are going to try a new treatment. Sure hope

> > >it works for you! Remember while you're sitting there attached to IVs

> > >for hours and feeling like you should be running after kids or

> > >something, that there are a lot of people pulling for you!

> > >

> > >Meanwhile, on Wednesday I delivered my biopsy slides to the neuro at

> > >UCSF, who said he would go over them very closely with the pathologist

> > >on Friday. He said my symptoms most closely match IBM, except for my

> > >age. Silly man kept referring to me as " young " at 51!<g> He said in

> > >practice he sees an equal number of men and women with IBM.

> > >

> > >The UC pathologist told me on the phone that he didn't see

> > >anything in the slides or electron microscopy that would lead him to

> > >look further for IBM ... no rimmed vacuoles or inclusion bodies. But

> > >he also didn't have special instructions to look for it.

> > >

> > >The neuro explained that patients are often DXed with PM in the

> > >absence of rimmed vacuoles, etc., but if they don't respond to

> > >treatment, then IBM is suspected. The problem is that the vacuoles or

> > >rods might not be in every muscle, so it's trial and error, whether

> > >they show up in a particular biopsy.

> > >

> > >He said that DM,PM, and IBM all have very different causes, even

> > >though the symptoms are so similar (except for the DM rashes.)

> > >

> > >He really seems to be leaning toward IBM because of my finger flexor

> > >weakness and forearm muscle atrophy. But he also wants to try

> > >treatment and I can tell you, I'm not giving in without a fight!

> > >

> > >So more waiting, to hear the second opinion on the biopsy, and for the

> > >neuro to call the rheumy and then to start on meds ... which ones I

> > >still don't know, but probably methotrexate or prednisone.

> > >

> > >You all know the drill ...

> > >

> > >From the second OV the doc knows that I research things so he didn't

> > >seem surprised that I already knew so much. He actually didn't say

> > >anything that I haven't already learned from reading your discussions

> > >and from google searches. What I most need now--the DX--can't be found

> > >on google!

> > >

> > >So now we go back to that old past time ... waiting for the phone to

> > >ring with the doc on the line!

> > >

> > >Tenayahh

> > >

> > >

> > >

> > >

> > > > Sue,

> > > > I am so glad you are going to try the IVIg. And your dad getting a

> > >power

> > > > chair-woohoo! Now you and him can go for walks together. Isn't it

> > >a great

> > > > feeling?? If I started anything, I am glad it is that! Take care

> > >of

> > > > yourself and your dad. Good news about your son's funeral license.

> > > I know

> > > > it was some time ago but success stories are great to hear anytime.

> > > >

> > > > Keep us posted on the IVIg. I am going to have mine set up soon

> > >too. He did

> > > > tell me that there really is no need to go into the hospital for it.

> > > I will

> > > > be at the clinic and the doctors are right across the hallway. He

> > >actually

> > > > said he would rather me be there then the doctor can just run across

> > >the

> > > > hallway to check on me rather than across the street and through the

> > > > hospital. I also asked him about changing from a PM to an IBM dx

> > >and he said

> > > > that is not something that happens. What happens, probably is that

> > >the

> > > > biopsy was 'dirty' and not read properly the first time and they

> > >actually

> > > > missed the inclusions. He is ordering a report of my original

> > >biopsy to make

> > > > sure but he is confident they were right with the PM since it did go

> > >to UCLA

> > > > pathology for biopsy.

> > > >

> > > > Anyway,

> > > > Have a great holiday weekend...

> > > >

> > > > Zanna

> > >

> >

> > _________________________________________________________________

> > Chat with friends online, try MSN Messenger: http://messenger.msn.com

> >

> >

> >

> >

> >