Re: Damn, its good to be heard!! (:>})

[Guest guest]

In a message dated 11/7/01 3:15:40 PM Pacific Standard Time, Mlier325@...

writes:

<<

I was so hoping to give you all more to go on, but at this point, I can just

thank God for having my voice back and say only he knows how it happened.

>>

.... YOu have given us the best news possible... I could just cry every

time I think of it... See miracles do happen... we won't question them...

just accept them.

I just wish I was there to give you a big hug... You know we love you bunches

and we are all truly blessed to have had such great news.

hugs and more hugs

[Guest guest]

In a message dated 11/7/01 3:15:40 PM Pacific Standard Time, Mlier325@...

writes:

<<

I was so hoping to give you all more to go on, but at this point, I can just

thank God for having my voice back and say only he knows how it happened.

>>

.... YOu have given us the best news possible... I could just cry every

time I think of it... See miracles do happen... we won't question them...

just accept them.

I just wish I was there to give you a big hug... You know we love you bunches

and we are all truly blessed to have had such great news.

hugs and more hugs

[Guest guest]

,

Thank you so much for the update on the wonderful news about your voice! If

you don't mind, I have a few questions!! I have never been able to talk to

someone who has the same vocal problems as me. I am due to be seen again by

my ENT Dr. in the next few days and will be scoped again! How long have you

had RP? Was your first symptom hoarseness? How long have you been without

your voice? I know you said that you have been on your current medications

for a year-- in that year, have you been on other medications? Have you

ever been on Methotrexate and if so, was it of any benefit? That is it for

now, but I am sure that I will have more in the near future! Thank you so

much!

Kathi

>From: Mlier325@...

>Reply-To: Rpolychondritis

>To: Rpolychondritis

>Subject: Damn, its good to be heard!! (:>})

>Date: Wed, 7 Nov 2001 18:13:17 EST

>

>Hi everyone. Gosh, it has been sooo long since I have been able to post!

>You all have been, and are in my thoughts and prayers!

>

>Okay, I went to see my ENT today to see if he could tell me how or why I

>got

>my voice back. He did not scope me like I hoped, but he did examine my

>throat, ears and nose and this is what we know.

>My vocal cords are still inflamed/swollen; so much so he could see the

>blood

>vessels or vasculitis with the mirror and without strobing me. However, he

>didn't seem to think the cartilage supporting them was as inflamed. He did

>say that was miraculous. I posed the question to him about the damaged

>cartilage possibly becoming the hard or firm scar tissue or fibrous tissue

>associated with the RP, and he thought it possible but could not give me a

>definite answer. I told him he was supposed to know the answers (LOL) and

>he said that there is still so much they don't know. There is so much to

>learn about this damn disease and I think he is as baffled as I am!

>

>He went over all the medications I've been on, and also the ones I have

>stopped taking or are in the process of quitting.

>As far as from the medicinal (RX) standpoint, it could be a combination --

>I

>have been reducing my prednisone and am now on 1 mg a day; and the buildup

>in

>my system of the Enbrel/Imuran combo I've been on for more than a year. I

>know this sounds strange, or at least it did to me, but he said that the

>long-term use of the prednisone causes more inflamation/adema and that it

>could have contributed some to my voice not coming back, but the adema

>caused

>by steroids is usually in soft tissues like the vocal cords.

>Unfortunately,

>he could not give me any definite answers other than my nose is getting

>crooked and misshapen and my larynx isn't going to collapse -- (he couldn't

>say the same about my trachea). He told me to keep doing what I've been

>doing and hopefully we could come up with some concrete answers.

>

>I was so hoping to give you all more to go on, but at this point, I can

>just

>thank God for having my voice back and say only he knows how it happened.

>

>God bless you all and know you are loved. Take care!

>Love, hugs, and smiles,

> L. (:>})

>

_________________________________________________________________

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

[Guest guest]

,

Thank you so much for the update on the wonderful news about your voice! If

you don't mind, I have a few questions!! I have never been able to talk to

someone who has the same vocal problems as me. I am due to be seen again by

my ENT Dr. in the next few days and will be scoped again! How long have you

had RP? Was your first symptom hoarseness? How long have you been without

your voice? I know you said that you have been on your current medications

for a year-- in that year, have you been on other medications? Have you

ever been on Methotrexate and if so, was it of any benefit? That is it for

now, but I am sure that I will have more in the near future! Thank you so

much!

Kathi

>From: Mlier325@...

>Reply-To: Rpolychondritis

>To: Rpolychondritis

>Subject: Damn, its good to be heard!! (:>})

>Date: Wed, 7 Nov 2001 18:13:17 EST

>

>Hi everyone. Gosh, it has been sooo long since I have been able to post!

>You all have been, and are in my thoughts and prayers!

>

>Okay, I went to see my ENT today to see if he could tell me how or why I

>got

>my voice back. He did not scope me like I hoped, but he did examine my

>throat, ears and nose and this is what we know.

>My vocal cords are still inflamed/swollen; so much so he could see the

>blood

>vessels or vasculitis with the mirror and without strobing me. However, he

>didn't seem to think the cartilage supporting them was as inflamed. He did

>say that was miraculous. I posed the question to him about the damaged

>cartilage possibly becoming the hard or firm scar tissue or fibrous tissue

>associated with the RP, and he thought it possible but could not give me a

>definite answer. I told him he was supposed to know the answers (LOL) and

>he said that there is still so much they don't know. There is so much to

>learn about this damn disease and I think he is as baffled as I am!

>

>He went over all the medications I've been on, and also the ones I have

>stopped taking or are in the process of quitting.

>As far as from the medicinal (RX) standpoint, it could be a combination --

>I

>have been reducing my prednisone and am now on 1 mg a day; and the buildup

>in

>my system of the Enbrel/Imuran combo I've been on for more than a year. I

>know this sounds strange, or at least it did to me, but he said that the

>long-term use of the prednisone causes more inflamation/adema and that it

>could have contributed some to my voice not coming back, but the adema

>caused

>by steroids is usually in soft tissues like the vocal cords.

>Unfortunately,

>he could not give me any definite answers other than my nose is getting

>crooked and misshapen and my larynx isn't going to collapse -- (he couldn't

>say the same about my trachea). He told me to keep doing what I've been

>doing and hopefully we could come up with some concrete answers.

>

>I was so hoping to give you all more to go on, but at this point, I can

>just

>thank God for having my voice back and say only he knows how it happened.

>

>God bless you all and know you are loved. Take care!

>Love, hugs, and smiles,

> L. (:>})

>

_________________________________________________________________

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

[Guest guest]

Hi Kathi,

I was diagnosed with RP in October 1998. I believe I had it long before then -- back in 1988, I was diagnosed with degenerative disc disease and had other problems. My doctor referred to me as an enigma (mystery). Anyway, my symptoms were recurring bouts of laryngitis -- I'd have my voice for a few days and then loose it for a couple of weeks or months and then get it back again for a few days; bronchitis, ear canal inflammation; right TMJ disk was almost gone; arthritis/arthralgia; my spine felt like it was on fire most of the time; and terrible sharp pains in my head that left me dizzy or with slurred speech. I had trouble breathing at times, and walking up stairs; my eyes were inflamed -- my nose would swell and get red and painful and it burned (It swelled up at least twice it's normal size and my son told me that I looked like I had a boxer's nose at one point LOL!). Also, my hands would swell and the palms would be bright red -- I had trouble holding on to things, chest pains. My doctor didn't know what to think!!

I have been without a voice for almost two years. I was told over a year ago that I would never get my voice back again because of all the damage. I just hope and pray that I get to keep it now!!

You asked about medications......... I was placed on Methotrexate after my diagnosis was confirmed by Dr. Trentham in Boston. I was taking it orally and then was switched to injections (20 mgs 1xweek); I was placed on 150 mgs of Imuran at the same time and did that for about a year. The Metho seemed to work for short periods and then I'd build up a tolerance and then the RP flared it's ugly head and I was getting worse. I went back to Boston and was place on Enbrel. Was on that for about 4 months without much results and then we added the Imuran to it and the combination has worked. I can tell you that my flares aren't near as bad as they were before! Now it is just dealing with the damage that has already been done.

If you'd like, I'll give you a list of medications I'm on now and used to be on. Just let me know.

Sorry to be so long winded but there is so much to tell I'd have to do it in parts -- better for both of us LOL!!

Take care --

Hugs and smiles,

L. (:>})

[Guest guest]

Hi Kathi,

I was diagnosed with RP in October 1998. I believe I had it long before then -- back in 1988, I was diagnosed with degenerative disc disease and had other problems. My doctor referred to me as an enigma (mystery). Anyway, my symptoms were recurring bouts of laryngitis -- I'd have my voice for a few days and then loose it for a couple of weeks or months and then get it back again for a few days; bronchitis, ear canal inflammation; right TMJ disk was almost gone; arthritis/arthralgia; my spine felt like it was on fire most of the time; and terrible sharp pains in my head that left me dizzy or with slurred speech. I had trouble breathing at times, and walking up stairs; my eyes were inflamed -- my nose would swell and get red and painful and it burned (It swelled up at least twice it's normal size and my son told me that I looked like I had a boxer's nose at one point LOL!). Also, my hands would swell and the palms would be bright red -- I had trouble holding on to things, chest pains. My doctor didn't know what to think!!

I have been without a voice for almost two years. I was told over a year ago that I would never get my voice back again because of all the damage. I just hope and pray that I get to keep it now!!

You asked about medications......... I was placed on Methotrexate after my diagnosis was confirmed by Dr. Trentham in Boston. I was taking it orally and then was switched to injections (20 mgs 1xweek); I was placed on 150 mgs of Imuran at the same time and did that for about a year. The Metho seemed to work for short periods and then I'd build up a tolerance and then the RP flared it's ugly head and I was getting worse. I went back to Boston and was place on Enbrel. Was on that for about 4 months without much results and then we added the Imuran to it and the combination has worked. I can tell you that my flares aren't near as bad as they were before! Now it is just dealing with the damage that has already been done.

If you'd like, I'll give you a list of medications I'm on now and used to be on. Just let me know.

Sorry to be so long winded but there is so much to tell I'd have to do it in parts -- better for both of us LOL!!

Take care --

Hugs and smiles,

L. (:>})

[Guest guest]

Hi ,

THANK YOU SO MUCH for getting back to me!! Our stories sound VERY similar.

The only symptom that you have that I have not experienced is that nose

pain/problems. The 2 things that I do battle that you didn't mention are

Fatigue that is so bad that it is hard to describe and bouts of severe

nausea. Both of those symptoms started at the same time that I began losing

my voice 4.5 years ago. In the beginning, I would lose my voice for days or

sometimes a few weeks at a time. IT would come back as quickly as I would

lose it. I had no warning in either case. As time went on, I would lose my

voice for longer periods of time and when I did get it back, it would only

be for a few days. Initially, when I was put on Prednisone (before RP

diagnosis) I would get my voice back, but it eventually quit working. Dr.

Trentham put me on Methotrexate and Prednisone in June and at that time, he

felt as if I would get my voice back fairly quickly. As of right now, I

have not had my voice since November of last year-- previous to that, I had

it for about 10 days. I think I told you before that I have had my voice

for a total of about 6 months, in very broken up periods, over the last

4.5-5.0 years. When you have your dizzy spells, how would you describe

them? When I read about others in the group who have this, they describe a

" room spinning " type of dizziness. Although I don't have that type, it is

difficult to describe what I do feel. They only way that I have been able

to describe it is-- the dizziness is within me--not the room around me. Did

you feel any benefit when you were getting injections of Methotrexate vs.

Oral medication? Did you feel any significant improvement from the Imuran

versus the Methotrexate? I will quit asking questions for now, but I do

have a million more!! Thank you so much-- and keep talking!! I remember

the last time I got my voice back-- I recorded the message on our answering

machine (and it is still on there) and I called and talked to everyone I

knew!! I know you must be thrilled!

Kathi

>From: Mlier325@...

>Reply-To: Rpolychondritis

>To: Rpolychondritis

>Subject: Re: Damn, its good to be heard!! (:>})

>Date: Fri, 9 Nov 2001 19:22:53 EST

>

>Hi Kathi,

>I was diagnosed with RP in October 1998. I believe I had it long before

>then

>-- back in 1988, I was diagnosed with degenerative disc disease and had

>other

>problems. My doctor referred to me as an enigma (mystery). Anyway, my

>symptoms were recurring bouts of laryngitis -- I'd have my voice for a few

>days and then loose it for a couple of weeks or months and then get it back

>again for a few days; bronchitis, ear canal inflammation; right TMJ disk

>was

>almost gone; arthritis/arthralgia; my spine felt like it was on fire most

>of

>the time; and terrible sharp pains in my head that left me dizzy or with

>slurred speech. I had trouble breathing at times, and walking up stairs;

>my

>eyes were inflamed -- my nose would swell and get red and painful and it

>burned (It swelled up at least twice it's normal size and my son told me

>that

>I looked like I had a boxer's nose at one point LOL!). Also, my hands

>would

>swell and the palms would be bright red -- I had trouble holding on to

>things, chest pains. My doctor didn't know what to think!!

>

>I have been without a voice for almost two years. I was told over a year

>ago

>that I would never get my voice back again because of all the damage. I

>just

>hope and pray that I get to keep it now!!

>

>You asked about medications......... I was placed on Methotrexate after my

>diagnosis was confirmed by Dr. Trentham in Boston. I was taking it orally

>and then was switched to injections (20 mgs 1xweek); I was placed on 150

>mgs

>of Imuran at the same time and did that for about a year. The Metho seemed

>to work for short periods and then I'd build up a tolerance and then the RP

>flared it's ugly head and I was getting worse. I went back to Boston and

>was

>place on Enbrel. Was on that for about 4 months without much results and

>then we added the Imuran to it and the combination has worked. I can tell

>you that my flares aren't near as bad as they were before! Now it is just

>dealing with the damage that has already been done.

>

>If you'd like, I'll give you a list of medications I'm on now and used to

>be

>on. Just let me know.

>

>Sorry to be so long winded but there is so much to tell I'd have to do it

>in

>parts -- better for both of us LOL!!

>Take care --

>Hugs and smiles,

> L. (:>})

_________________________________________________________________

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

[Guest guest]

Hi ,

THANK YOU SO MUCH for getting back to me!! Our stories sound VERY similar.

The only symptom that you have that I have not experienced is that nose

pain/problems. The 2 things that I do battle that you didn't mention are

Fatigue that is so bad that it is hard to describe and bouts of severe

nausea. Both of those symptoms started at the same time that I began losing

my voice 4.5 years ago. In the beginning, I would lose my voice for days or

sometimes a few weeks at a time. IT would come back as quickly as I would

lose it. I had no warning in either case. As time went on, I would lose my

voice for longer periods of time and when I did get it back, it would only

be for a few days. Initially, when I was put on Prednisone (before RP

diagnosis) I would get my voice back, but it eventually quit working. Dr.

Trentham put me on Methotrexate and Prednisone in June and at that time, he

felt as if I would get my voice back fairly quickly. As of right now, I

have not had my voice since November of last year-- previous to that, I had

it for about 10 days. I think I told you before that I have had my voice

for a total of about 6 months, in very broken up periods, over the last

4.5-5.0 years. When you have your dizzy spells, how would you describe

them? When I read about others in the group who have this, they describe a

" room spinning " type of dizziness. Although I don't have that type, it is

difficult to describe what I do feel. They only way that I have been able

to describe it is-- the dizziness is within me--not the room around me. Did

you feel any benefit when you were getting injections of Methotrexate vs.

Oral medication? Did you feel any significant improvement from the Imuran

versus the Methotrexate? I will quit asking questions for now, but I do

have a million more!! Thank you so much-- and keep talking!! I remember

the last time I got my voice back-- I recorded the message on our answering

machine (and it is still on there) and I called and talked to everyone I

knew!! I know you must be thrilled!

Kathi

>From: Mlier325@...

>Reply-To: Rpolychondritis

>To: Rpolychondritis

>Subject: Re: Damn, its good to be heard!! (:>})

>Date: Fri, 9 Nov 2001 19:22:53 EST

>

>Hi Kathi,

>I was diagnosed with RP in October 1998. I believe I had it long before

>then

>-- back in 1988, I was diagnosed with degenerative disc disease and had

>other

>problems. My doctor referred to me as an enigma (mystery). Anyway, my

>symptoms were recurring bouts of laryngitis -- I'd have my voice for a few

>days and then loose it for a couple of weeks or months and then get it back

>again for a few days; bronchitis, ear canal inflammation; right TMJ disk

>was

>almost gone; arthritis/arthralgia; my spine felt like it was on fire most

>of

>the time; and terrible sharp pains in my head that left me dizzy or with

>slurred speech. I had trouble breathing at times, and walking up stairs;

>my

>eyes were inflamed -- my nose would swell and get red and painful and it

>burned (It swelled up at least twice it's normal size and my son told me

>that

>I looked like I had a boxer's nose at one point LOL!). Also, my hands

>would

>swell and the palms would be bright red -- I had trouble holding on to

>things, chest pains. My doctor didn't know what to think!!

>

>I have been without a voice for almost two years. I was told over a year

>ago

>that I would never get my voice back again because of all the damage. I

>just

>hope and pray that I get to keep it now!!

>

>You asked about medications......... I was placed on Methotrexate after my

>diagnosis was confirmed by Dr. Trentham in Boston. I was taking it orally

>and then was switched to injections (20 mgs 1xweek); I was placed on 150

>mgs

>of Imuran at the same time and did that for about a year. The Metho seemed

>to work for short periods and then I'd build up a tolerance and then the RP

>flared it's ugly head and I was getting worse. I went back to Boston and

>was

>place on Enbrel. Was on that for about 4 months without much results and

>then we added the Imuran to it and the combination has worked. I can tell

>you that my flares aren't near as bad as they were before! Now it is just

>dealing with the damage that has already been done.

>

>If you'd like, I'll give you a list of medications I'm on now and used to

>be

>on. Just let me know.

>

>Sorry to be so long winded but there is so much to tell I'd have to do it

>in

>parts -- better for both of us LOL!!

>Take care --

>Hugs and smiles,

> L. (:>})

_________________________________________________________________

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