New Member

Posted November 7, 2002 · November 7, 2002

Hi Don:

Boy, so many light bulbs begin going off in my head the more I read from

this group. I have the same problem many times when I try talking on the

phone but just thought it was sinuses or something like that. One other

thing I have noticed is that sometimes I am constantly swallowing as it

feels there is something in the back of my throat. I too, would be

interested in hearing any comments relating to same.

Welcome to the group Don and Joanne. Will look forward to hearing from you

again.

Jo!

New member

> Hello everyone,

>

> My name is Don Penny and I'm new to the group. I've been listening in a

> couple of weeks but this is my first posting. My wife Joanne and I

attended

> the wonderful Autumn in Carolina meeting in October and met some of you

> there. I was diagnosed in June of 1999 and have progressed slowly,

steadily

> to a four-wheeled walker, which I could not get along without. For longer

> excursions I also have a scooter. I teach in a university setting and have

> maintained a full teaching load plus all normal ancillary duties so far.

PLS

> has mainly affected my legs, though I can feel symptoms in the trunk and

> arms as well. My voice and swallowing have not been affected--I think.

>

> I have noticed several postings lately related to coughing. I have had a

> nagging, persistent cough for going on 2 years. Vaughn's description

sounds

> much like mine (except I've never been a smoker)--dry, unproductive cough

> associated with talking. As soon as I begin to talk, here comes the

> cough--especially on the phone. In my line of work, this has been quite

> annoying--to me but especially to my students! I know they get tired of

> hearing it, and I constantly apologize for it. The saving factor--and the

> most perplexing aspect--is that (usually) after I've begun talking for a

> while the coughing subsides.

>

> I've been seeing an ENT for over a year. He saw the kind of inflammation

> around my vocal cords normally associated with acid reflux and has been

> treating me with Prilosec, Nexium, etc. to reduce the acid. Initially this

> seemed to help. The cough cleared up for a while. But then it

returned--with

> no change in treatment--and is now just as bad as ever. I've tried changes

> in diet, elevating the head of the bed, etc. with no success. My ENT no

> longer sees the inflammation, but the coughing is just the same.

>

> I'm beginning to wonder if the coughing is PLS-related. Vaughn, did your

> coughing begin before or after you started to notice problems with your

> voice and/or swallowing? Could the coughing be an early sign of PLS moving

> into that region? I take baclofen and zanaflex for spasticity. Could they

be

> a factor?

>

> Any thoughts out there will be appreciated.

>

> Glad to be in the group,

>

> Don Penny

>

Posted November 7, 2002 · November 7, 2002

Hi Don:

Boy, so many light bulbs begin going off in my head the more I read from

this group. I have the same problem many times when I try talking on the

phone but just thought it was sinuses or something like that. One other

thing I have noticed is that sometimes I am constantly swallowing as it

feels there is something in the back of my throat. I too, would be

interested in hearing any comments relating to same.

Welcome to the group Don and Joanne. Will look forward to hearing from you

again.

Jo!

New member

> Hello everyone,

>

> My name is Don Penny and I'm new to the group. I've been listening in a

> couple of weeks but this is my first posting. My wife Joanne and I

attended

> the wonderful Autumn in Carolina meeting in October and met some of you

> there. I was diagnosed in June of 1999 and have progressed slowly,

steadily

> to a four-wheeled walker, which I could not get along without. For longer

> excursions I also have a scooter. I teach in a university setting and have

> maintained a full teaching load plus all normal ancillary duties so far.

PLS

> has mainly affected my legs, though I can feel symptoms in the trunk and

> arms as well. My voice and swallowing have not been affected--I think.

>

> I have noticed several postings lately related to coughing. I have had a

> nagging, persistent cough for going on 2 years. Vaughn's description

sounds

> much like mine (except I've never been a smoker)--dry, unproductive cough

> associated with talking. As soon as I begin to talk, here comes the

> cough--especially on the phone. In my line of work, this has been quite

> annoying--to me but especially to my students! I know they get tired of

> hearing it, and I constantly apologize for it. The saving factor--and the

> most perplexing aspect--is that (usually) after I've begun talking for a

> while the coughing subsides.

>

> I've been seeing an ENT for over a year. He saw the kind of inflammation

> around my vocal cords normally associated with acid reflux and has been

> treating me with Prilosec, Nexium, etc. to reduce the acid. Initially this

> seemed to help. The cough cleared up for a while. But then it

returned--with

> no change in treatment--and is now just as bad as ever. I've tried changes

> in diet, elevating the head of the bed, etc. with no success. My ENT no

> longer sees the inflammation, but the coughing is just the same.

>

> I'm beginning to wonder if the coughing is PLS-related. Vaughn, did your

> coughing begin before or after you started to notice problems with your

> voice and/or swallowing? Could the coughing be an early sign of PLS moving

> into that region? I take baclofen and zanaflex for spasticity. Could they

be

> a factor?

>

> Any thoughts out there will be appreciated.

>

> Glad to be in the group,

>

> Don Penny

>

Posted January 15, 2003 · January 15, 2003

, hello and welcome my name is Josie, I had pericarditis a few years back, Bed rest is one thing they did, but they also put me on some medication, I beleive they started me on Steroids, check with your doctor but don't let it go. I hope you get some releife soon. Josie

new member

hello everyone. I am a new member here, and I am having some problems I was wondering if anyone has some advice about. I have pericarditis and it is very painful, i have researched it as much as possible and have had no luck finding much about ways to ease the pain, any ideas? thank you,tiffany"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies

Posted March 15, 2003 · March 15, 2003

hello shrunnyon. welcome to the group. this is a great place. lot of

love and understanding. come on and join us when you can. hugs cathy

Posted July 20, 2003 · July 20, 2003

Hi Tammy, Nice to meet you. Welcome to the group. Don't be afraid to

ask any questions that you may have about RSD or its treatments or meds.

Someone here will be able to answer them. Does the dr think that you

have had RSD since your arm was broken when you were l5?

Did your dr say that he was going to do the block in your back? Just

asking. There are blocks for the arm that are done in the neck also.

My dr puts me asleep for any blocks I have done. I have had RSD for 23

years and have full body RSD.

I only get epidural blocks now for when I have a RSD flare. I really am

sorry about your arm. Is it hard for you to do things?

Take care and you are in my prayers.

Hugs,

babs

Posted July 20, 2003 · July 20, 2003

Hi Tammy, Nice to meet you. Welcome to the group. Don't be afraid to

ask any questions that you may have about RSD or its treatments or meds.

Someone here will be able to answer them. Does the dr think that you

have had RSD since your arm was broken when you were l5?

Did your dr say that he was going to do the block in your back? Just

asking. There are blocks for the arm that are done in the neck also.

My dr puts me asleep for any blocks I have done. I have had RSD for 23

years and have full body RSD.

I only get epidural blocks now for when I have a RSD flare. I really am

sorry about your arm. Is it hard for you to do things?

Take care and you are in my prayers.

Hugs,

babs

Posted July 27, 2003 · July 27, 2003

Hi, my name is Philip and I am 27 years old and have had RSD since December of 2001. This is the first time to be in the support group, so I am a little unsure if I am supposed to post my bio or not. But I am going to anyways!!! I love to talk and get email; especially from people who know what I am going through.

Here's my bio:

I was diagnosed with RSD on 12-3-01. It wasn't for sure that on this date I in fact had RSD, but after referring me to another doctor, and then to the doctor I now see, Dr. Neil Atlin. You may remember him from some famous shows as 20/20 or Primetime Live. He was featured as one of the top 3 RSD dr's in the US. Luckily, being that I am or was in the medical field, I was diagnosed rather early and had the proper testing performed, so not as to go through some of the horrible things happen to me as I hear have happened to others. I was for sure, and my doctor was sure, that I had RSD after having a Stellate Ganglion Block performed on my right hand. After having the block performed I was told that my right hand/arm had RSD. My right hand/arm returned to normal color, and temperature. It was great, for a short time, because I could move my right hand and arm normally and all without pain and agony. I went through about 10 blocks and several different medications. Several months ago I had a temporary spinal cord stimulator trial performed. At no success, 2 days later it was removed. My RSD doctor did many Stellate ganglion blocks and my RSD continued to spread. I continued to ask for medication change, but he told me that I was on the correct dosage and correct type. My Mom went to medical school, so she looked everything over and saw the gross negligence that was happening and how it could end up costing me my life or shorten my life, etc. So I immediately asked the doctor to change my meds, etc or I was going to find another doctor. Well I am now searching for a new RSD doctor. I will tell everyone the exact details of that appointment at a later date, as it is very lengthy. I can only use one hand to type, so typing long letters, emails, etc. becomes very difficult and time consuming, as I have to take breaks to rest my left arm/hand.

Currently my RSD is in my right hand/arm, both feet and some of the leg area, my back at times, and here lately I have been having a lot of stomach problems, but I haven't been to an RSD doctor yet to confirm whether or not that is related to my RSD. Some of you may remember me from last year (2002). I moved to Florida and ended up dropping out of the group. I am now back in Texas and as I have known for a long time, the battle with RSD is a lot easier to fight and handle if you have a strong support/friends group; whom I know are here. I never should have left, as ever since then I have became more depressed because I only have friends that have no idea what I am going through, so it is much harder for them to understand and for me to truly open up and tell my true feelings, hurts, needs, and/or wants.

I look forward to being a part of the group again!!! I don't mind receiving private e-mail's. My email address is RSDFighter@...

Philip

Fax

RSDFighter@...

Posted July 27, 2003 · July 27, 2003

Hi Phil, Nice to meet you. I just joined this group a few weeks ago

and really love everyone here. I have had RSD for 23 years and it is

full body. I do have RSD in the lining of my stomach for which I take

meds for. I hope you are able to find a new dr soon. You are very

lucky though that you got dx so early. If I can be of any help in

answering any questions please let me know. Take care and have a good

day.

Hugs,

babs

Posted July 27, 2003 · July 27, 2003

Hi Phil, Nice to meet you. I just joined this group a few weeks ago

and really love everyone here. I have had RSD for 23 years and it is

full body. I do have RSD in the lining of my stomach for which I take

meds for. I hope you are able to find a new dr soon. You are very

lucky though that you got dx so early. If I can be of any help in

answering any questions please let me know. Take care and have a good

day.

Hugs,

babs

Posted July 27, 2003 · July 27, 2003

Hi Cass, I am so sorry that you are allergic to the Catapras Patch. I

know just how you feel. It is so depressing when we finally find

something that takes even a little bit of the pain away only to find out

that we are allergic to it. I think it might be a good idea if you call

your dr and at least leave a message telling him what happened. At

least then he cannot say that it was all in your head. Even if he

doesn't call you back at least you can say you told him abou it. I hope

things start getting better for you. I went through so many meds before

I finally found the ones that worked the best for me so hang in there.

I know it is tough but if I can do it you can too. Take care

Hugs,

babs

Posted July 28, 2003 · July 28, 2003

Hi ,

Welcome back to the group. My name is Betsy.....I am an old lady and

have been fighting the monster for a little over 5 months. It is

helpful to be able to talk to others who are fighting the same

battle. DHope to get to know you better as time goes on.

May the Lord Bless,

Betsy

> Hi, my name is Philip and I am 27 years old and have had RSD since

> December of 2001. This is the first time to be in the support

group, so

> I am a little unsure if I am supposed to post my bio or not. But I

am

> going to anyways!!! I love to talk and get email; especially from

> people who know what I am going through.

>

> Here's my bio:

>

> I was diagnosed with RSD on 12-3-01. It wasn't for sure that on

this

> date I in fact had RSD, but after referring me to another doctor,

and

> then to the doctor I now see, Dr. Neil Atlin. You may remember him

from

> some famous shows as 20/20 or Primetime Live. He was featured as

one of

> the top 3 RSD dr's in the US. Luckily, being that I am or was in

the

> medical field, I was diagnosed rather early and had the proper

testing

> performed, so not as to go through some of the horrible things

happen to

> me as I hear have happened to others. I was for sure, and my

doctor was

> sure, that I had RSD after having a Stellate Ganglion Block

performed on

> my right hand. After having the block performed I was told that my

> right hand/arm had RSD. My right hand/arm returned to normal

color, and

> temperature. It was great, for a short time, because I could move

my

> right hand and arm normally and all without pain and agony. I went

> through about 10 blocks and several different medications. Several

> months ago I had a temporary spinal cord stimulator trial

performed. At

> no success, 2 days later it was removed. My RSD doctor did many

> Stellate ganglion blocks and my RSD continued to spread. I

continued to

> ask for medication change, but he told me that I was on the correct

> dosage and correct type. My Mom went to medical school, so she

looked

> everything over and saw the gross negligence that was happening and

how

> it could end up costing me my life or shorten my life, etc. So I

> immediately asked the doctor to change my meds, etc or I was going

to

> find another doctor. Well I am now searching for a new RSD doctor.

I

> will tell everyone the exact details of that appointment at a later

> date, as it is very lengthy. I can only use one hand to type, so

typing

> long letters, emails, etc. becomes very difficult and time

consuming, as

> I have to take breaks to rest my left arm/hand.

>

> Currently my RSD is in my right hand/arm, both feet and some of the

leg

> area, my back at times, and here lately I have been having a lot of

> stomach problems, but I haven't been to an RSD doctor yet to confirm

> whether or not that is related to my RSD. Some of you may remember

me

> from last year (2002). I moved to Florida and ended up dropping

out of

> the group. I am now back in Texas and as I have known for a long

time,

> the battle with RSD is a lot easier to fight and handle if you have

a

> strong support/friends group; whom I know are here. I never should

have

> left, as ever since then I have became more depressed because I only

> have friends that have no idea what I am going through, so it is

much

> harder for them to understand and for me to truly open up and tell

my

> true feelings, hurts, needs, and/or wants.

>

> I look forward to being a part of the group again!!! I don't mind

> receiving private e-mail's. My email address is RSDFighter@c...

>

> Philip

> Fax

> RSDFighter@c...

Posted July 29, 2003 · July 29, 2003

Hi , You are not in lack of friends anymore. Now you have all

of us. So anytime you want to talk to someone, just send a message. I

am sure one of us will be around to read it and be there for you.

TAke care and have a good day. By the way I am from PA.

Hugs,

babs

Posted July 29, 2003 · July 29, 2003

Hi , You are not in lack of friends anymore. Now you have all

of us. So anytime you want to talk to someone, just send a message. I

am sure one of us will be around to read it and be there for you.

TAke care and have a good day. By the way I am from PA.

Hugs,

babs

Posted July 29, 2003 · July 29, 2003

Hi , You are not in lack of friends anymore. Now you have all

of us. So anytime you want to talk to someone, just send a message. I

am sure one of us will be around to read it and be there for you.

TAke care and have a good day. By the way I am from PA.

Hugs,

babs

Posted April 11, 2004 · April 11, 2004

Welcome , we will be with you all the way. This is the most supportive group around. These ladies have been there sone that. Dont be afraid to ask any question.

Hugs

Jeana

Posted April 11, 2004 · April 11, 2004

Hi Michele,

Welcome to the group. The ladies are the best. My name is nne and I was

diagnosed with infiltrating ductal carcinoma and had my surgery on May 24,

1990. I wish I had had both breast removed. I had one bad node, had 6 mo of

chemo and no radiation.

Hugs

nne

Breast Cancer Patients Soul Mates for Life

http://www.geocities.com/chucky5741/breastcancerpatients.html

Check out my breast cancer ornaments at:

http://www.geocities.com/chucky5741/bcornament.html

also check out my other ornaments and lots of nice gifts at:

http://www.cancerclub.com

New member

> Hi my name is Michele, I'm 42 and single. I joined this site today

> after my friend Sherri sent me the link. I found out 2 months ago

> that I have breast cancer in my right breast. After much running

> around and with help of my surgen I was able to get into the land

> Medical Asst Program. When I found the lump I was just starting back

> to work after 6 months of being out of work so I had no insurance.

> Thanks to my doctor I was told about this program ,in the state of

> MD, after 1 months of waiting I got into the first part of the

> program but they don't have enough money in the system to cover the

> plactic surgery part so they got me into the main system. Now

> everything is covered which was a load off of my mind. On Wed April

> 14th,I go into the hospital for a double mastectomy. I opted to have

> both removed cause I didn't want one without the other. My doctor was

> a little taken back when I told him to take both but he knew I had

> thought it over long and hard. They are doing the fisrt step of the

> implants that day also. I know I have a long road ahead of me but I'm

> ready now to get on with that stage of my life. The not know of how

> bad it is, is killing me. I pray that it's not in any other part of

> my body but I have to wait and see. I'm glad to know that there are

> groups around like this to help me through the process. I have a

> strong support group behind me in family and friends so this is just

> the iceing on the cake for me. It does help to be able to talk with

> others that have gone or are going through the same thing.

>

> Thanks

> Michele

>

Posted April 11, 2004 · April 11, 2004