Question:

On Tue, 7 May 2002 23:41:47 -0400, "Janers" <rojak…@bright.net> wrote: >So here we are.  Popping more meds and making damn sure I take some more >pain pills.  This tummy thing is out of hand and now the chest mucles. >I am going to put me larger electrodes on with my tens and numb the >sucker LOL.

is it possible that the tummy thing is causing the chest muscle thing. Either as referred pain or because you’re fighting to keep the tummy from bothering you and straining the muscles? the chest pain of costochondritis can be very scary too.  and i made mine a lot worse by trying to "hold" my back a certain way to prevent the pain.  I hope that’s all this is – ’cause if so then it’s a matter of coping and maybe anti-inflammatory but no danger. >Hope you all are ok, and I will read tomorrow and catch up the best I >can..

don’t worry about that – just take care of you! k

Response:

((((((((jane)))))))))))) i’m so sorry about all the troubles you have had recently. It’s wonderful you got to the hospital and that your problems continued there. May we all be so lucky when chest pain hits rather than denying it. I hope that through the tests they can sort it out and help your feel better. Miss our msn im chats you dang BUCKEYE, you! Hugs, prayers, and angels on your pillow. Love ya, eileen

Response:

In article <r81C8.743$FL3.128…@cletus.bright.net>, "Janers" <rojak…@bright.net> wrote:

Hi Sarge, Have a talk with your chest and tell it to knock off all the stuff it has been handing you lately.  I imagine how scary it was when you were just sitting there relaxing. Were you wearing a bra?  Sometimes going bra-less makes breathing easier.  I’m having my echo cardiogram and stress test next week.  All the time I walk I will be sending you best wishes. Wish you were writing about going out in a camper instead  of the ER. Muc love to you and Ron     love   ruth – Hide quoted text — Show quoted text -> Well well, I am finally able to say HELLO people. > I had a scare sunday.  Had chest pain and felt like an elephant was > sitting there relaxing.  I had an irregular heart rate on and off all > afternoon sunday.  But disregarded it until that elephant sat down. > Went for a ride in an ambulance after some nitro under the tongue and > ended up on nitro drip and admitted. > They even gave me a drug for heart burn IV because I had just had the > achalasia ballon done. > After all was done and blood tests and stuff came back normal with no > heart damage, well I was happy.  I was still on nitro drip and heparin > to keep my blood thin. > Doc think that a change in heart meds and bp meds were in order, since > the heart rhythm is nothing to hurt you just damn scarey. She did say > there was a drug for that but IF given as some very nasty bad side > effects and did not want that.  Hell me neither.  So she put me on a > heart rate regulator and more nitro to move the food down the sluggish > esophagus.  We discussed that this maybe due to the MCTD but NO one > wants to put a blanket diagnosis as to where the problem is coming from. > So they treat the problem. > Well this morning ready to go home Janers.  yep out of bed took a bath > and boom, could not breath. > More tests, more IV’s and nuclear scan and stress test.  I won.  NO > damage noted so the doc thinks indeed this maybe muscular because as I > was walking the stabbing pain came back into the chest.  like a knife > off and on.  She thinks the MCTD has either hit the above or even the > lungs.  I have symptoms of scleroderma so we will see.  She is sending > everything to my rheumy to view. > I think that is it.  I think that the muscle in my chest wall are just > plain tight and that maybe the cause. > But damn it is scarey.  Makes the heart pound and pressure build.  She > said even if you don’t react to it yourself, your body will and that is > what makes the increase in pain and heart and bp. > So here we are.  Popping more meds and making damn sure I take some more > pain pills.  This tummy thing is out of hand and now the chest mucles. > I am going to put me larger electrodes on with my tens and numb the > sucker LOL. > I will try anything to stop having this feeling.  very scarey. > I had oh my, lots of messages and can not possibly get to all of you, so > this is my way or doing so.. > Hope you all are ok, and I will read tomorrow and catch up the best I > can.. > God Bless you all > janers

Response:

Janers wrote: > [] because I had just had the > achalasia ballon done. > [] > Well this morning ready to go home Janers.  yep out of bed took a bath > and boom, could not breath.

Hi Janers, that surgery can cause or make reflux worse http://www.ssat.com/guidelines/achalasia.htm are you sleeping with the head of your bed elevated? Still on proton pump or gastric pump inhibitors? J

Response:

Please take care of yourself.  We do need you around here!  I remember how scarey it was when my dad had chest pains so many years ago. Everything came to a screeching halt. On Tue, 7 May 2002 23:41:47 -0400, "Janers" <rojak…@bright.net> wrote: – Hide quoted text — Show quoted text ->Well well, I am finally able to say HELLO people. >I had a scare sunday.  Had chest pain and felt like an elephant was >sitting there relaxing.  I had an irregular heart rate on and off all >afternoon sunday.  But disregarded it until that elephant sat down. >Went for a ride in an ambulance after some nitro under the tongue and >ended up on nitro drip and admitted. >They even gave me a drug for heart burn IV because I had just had the >achalasia ballon done. >After all was done and blood tests and stuff came back normal with no >heart damage, well I was happy.  I was still on nitro drip and heparin >to keep my blood thin. >Doc think that a change in heart meds and bp meds were in order, since >the heart rhythm is nothing to hurt you just damn scarey. She did say >there was a drug for that but IF given as some very nasty bad side >effects and did not want that.  Hell me neither.  So she put me on a >heart rate regulator and more nitro to move the food down the sluggish >esophagus.  We discussed that this maybe due to the MCTD but NO one >wants to put a blanket diagnosis as to where the problem is coming from. >So they treat the problem. >Well this morning ready to go home Janers.  yep out of bed took a bath >and boom, could not breath. >More tests, more IV’s and nuclear scan and stress test.  I won.  NO >damage noted so the doc thinks indeed this maybe muscular because as I >was walking the stabbing pain came back into the chest.  like a knife >off and on.  She thinks the MCTD has either hit the above or even the >lungs.  I have symptoms of scleroderma so we will see.  She is sending >everything to my rheumy to view. >I think that is it.  I think that the muscle in my chest wall are just >plain tight and that maybe the cause. >But damn it is scarey.  Makes the heart pound and pressure build.  She >said even if you don’t react to it yourself, your body will and that is >what makes the increase in pain and heart and bp. >So here we are.  Popping more meds and making damn sure I take some more >pain pills.  This tummy thing is out of hand and now the chest mucles. >I am going to put me larger electrodes on with my tens and numb the >sucker LOL. >I will try anything to stop having this feeling.  very scarey. >I had oh my, lots of messages and can not possibly get to all of you, so >this is my way or doing so.. >Hope you all are ok, and I will read tomorrow and catch up the best I >can.. >God Bless you all >janers

Response:

Good grief, I hope you are getting stronger. No more ambulance rides for a while please. I know they are exciting, but sounds pretty scary to me. Go rest, and get better soon. Wende "Wes Johnston" <wesle…@msn.com> wrote in message

news:b27iduslf3uekdesfdn9ujdo7f1blbmann@4ax.com… – Hide quoted text — Show quoted text -> Please take care of yourself.  We do need you around here!  I remember > how scarey it was when my dad had chest pains so many years ago. > Everything came to a screeching halt. > On Tue, 7 May 2002 23:41:47 -0400, "Janers" <rojak…@bright.net> > wrote: > >Well well, I am finally able to say HELLO people. > >I had a scare sunday.  Had chest pain and felt like an elephant was > >sitting there relaxing.  I had an irregular heart rate on and off all > >afternoon sunday.  But disregarded it until that elephant sat down. > >Went for a ride in an ambulance after some nitro under the tongue and > >ended up on nitro drip and admitted. > >They even gave me a drug for heart burn IV because I had just had the > >achalasia ballon done. > >After all was done and blood tests and stuff came back normal with no > >heart damage, well I was happy.  I was still on nitro drip and heparin > >to keep my blood thin. > >Doc think that a change in heart meds and bp meds were in order, since > >the heart rhythm is nothing to hurt you just damn scarey. She did say > >there was a drug for that but IF given as some very nasty bad side > >effects and did not want that.  Hell me neither.  So she put me on a > >heart rate regulator and more nitro to move the food down the sluggish > >esophagus.  We discussed that this maybe due to the MCTD but NO one > >wants to put a blanket diagnosis as to where the problem is coming from. > >So they treat the problem. > >Well this morning ready to go home Janers.  yep out of bed took a bath > >and boom, could not breath. > >More tests, more IV’s and nuclear scan and stress test.  I won.  NO > >damage noted so the doc thinks indeed this maybe muscular because as I > >was walking the stabbing pain came back into the chest.  like a knife > >off and on.  She thinks the MCTD has either hit the above or even the > >lungs.  I have symptoms of scleroderma so we will see.  She is sending > >everything to my rheumy to view. > >I think that is it.  I think that the muscle in my chest wall are just > >plain tight and that maybe the cause. > >But damn it is scarey.  Makes the heart pound and pressure build.  She > >said even if you don’t react to it yourself, your body will and that is > >what makes the increase in pain and heart and bp. > >So here we are.  Popping more meds and making damn sure I take some more > >pain pills.  This tummy thing is out of hand and now the chest mucles. > >I am going to put me larger electrodes on with my tens and numb the > >sucker LOL. > >I will try anything to stop having this feeling.  very scarey. > >I had oh my, lots of messages and can not possibly get to all of you, so > >this is my way or doing so.. > >Hope you all are ok, and I will read tomorrow and catch up the best I > >can.. > >God Bless you all > >janers

Response:

Hi Janers, Didn’t your Mom ever tell you that if you play with strange elephants, you risk getting squashed? Well, at least you won’t need rabies shots for that. <g> Seriously, I hope this will be the last of your problems. You have been through quite enough. Keep us updated and be well. BJ-thinking of you "Janers" <rojak…@bright.net> wrote in message

news:r81C8.743$FL3.128434@cletus.bright.net… – Hide quoted text — Show quoted text -> Well well, I am finally able to say HELLO people. > I had a scare sunday.  Had chest pain and felt like an elephant was > sitting there relaxing.  I had an irregular heart rate on and off all > afternoon sunday.  But disregarded it until that elephant sat down. > Went for a ride in an ambulance after some nitro under the tongue and > ended up on nitro drip and admitted. > They even gave me a drug for heart burn IV because I had just had the > achalasia ballon done. > After all was done and blood tests and stuff came back normal with no > heart damage, well I was happy.  I was still on nitro drip and heparin > to keep my blood thin. > Doc think that a change in heart meds and bp meds were in order, since > the heart rhythm is nothing to hurt you just damn scarey. She did say > there was a drug for that but IF given as some very nasty bad side > effects and did not want that.  Hell me neither.  So she put me on a > heart rate regulator and more nitro to move the food down the sluggish > esophagus.  We discussed that this maybe due to the MCTD but NO one > wants to put a blanket diagnosis as to where the problem is coming from. > So they treat the problem. > Well this morning ready to go home Janers.  yep out of bed took a bath > and boom, could not breath. > More tests, more IV’s and nuclear scan and stress test.  I won.  NO > damage noted so the doc thinks indeed this maybe muscular because as I > was walking the stabbing pain came back into the chest.  like a knife > off and on.  She thinks the MCTD has either hit the above or even the > lungs.  I have symptoms of scleroderma so we will see.  She is sending > everything to my rheumy to view. > I think that is it.  I think that the muscle in my chest wall are just > plain tight and that maybe the cause. > But damn it is scarey.  Makes the heart pound and pressure build.  She > said even if you don’t react to it yourself, your body will and that is > what makes the increase in pain and heart and bp. > So here we are.  Popping more meds and making damn sure I take some more > pain pills.  This tummy thing is out of hand and now the chest mucles. > I am going to put me larger electrodes on with my tens and numb the > sucker LOL. > I will try anything to stop having this feeling.  very scarey. > I had oh my, lots of messages and can not possibly get to all of you, so > this is my way or doing so.. > Hope you all are ok, and I will read tomorrow and catch up the best I > can.. > God Bless you all > janers

Response:

Well well, I am finally able to say HELLO people. I had a scare sunday.  Had chest pain and felt like an elephant was sitting there relaxing.  I had an irregular heart rate on and off all afternoon sunday.  But disregarded it until that elephant sat down. Went for a ride in an ambulance after some nitro under the tongue and ended up on nitro drip and admitted. They even gave me a drug for heart burn IV because I had just had the achalasia ballon done. After all was done and blood tests and stuff came back normal with no heart damage, well I was happy.  I was still on nitro drip and heparin to keep my blood thin. Doc think that a change in heart meds and bp meds were in order, since the heart rhythm is nothing to hurt you just damn scarey. She did say there was a drug for that but IF given as some very nasty bad side effects and did not want that.  Hell me neither.  So she put me on a heart rate regulator and more nitro to move the food down the sluggish esophagus.  We discussed that this maybe due to the MCTD but NO one wants to put a blanket diagnosis as to where the problem is coming from. So they treat the problem. Well this morning ready to go home Janers.  yep out of bed took a bath and boom, could not breath. More tests, more IV’s and nuclear scan and stress test.  I won.  NO damage noted so the doc thinks indeed this maybe muscular because as I was walking the stabbing pain came back into the chest.  like a knife off and on.  She thinks the MCTD has either hit the above or even the lungs.  I have symptoms of scleroderma so we will see.  She is sending everything to my rheumy to view. I think that is it.  I think that the muscle in my chest wall are just plain tight and that maybe the cause. But damn it is scarey.  Makes the heart pound and pressure build.  She said even if you don’t react to it yourself, your body will and that is what makes the increase in pain and heart and bp. So here we are.  Popping more meds and making damn sure I take some more pain pills.  This tummy thing is out of hand and now the chest mucles. I am going to put me larger electrodes on with my tens and numb the sucker LOL. I will try anything to stop having this feeling.  very scarey. I had oh my, lots of messages and can not possibly get to all of you, so this is my way or doing so.. Hope you all are ok, and I will read tomorrow and catch up the best I can.. God Bless you all janers

Response:

Janers,  Goodness I guess it would have been frightening!  Hope that they find the right medicine to keep it under control and you out of the ambulance and hospital. Get some rest and don’t worry about catching up.  You need to take care of yourself. Hugs, Sherry

Response:

Damn, woman, *stop* that stuff and get better – we ~need~ you! "Janers" <rojak…@bright.net> wrote in message

news:r81C8.743$FL3.128434@cletus.bright.net… – Hide quoted text — Show quoted text -> Well well, I am finally able to say HELLO people. > I had a scare sunday.  Had chest pain and felt like an elephant was > sitting there relaxing.  I had an irregular heart rate on and off all > afternoon sunday.  But disregarded it until that elephant sat down. > Went for a ride in an ambulance after some nitro under the tongue and > ended up on nitro drip and admitted. > They even gave me a drug for heart burn IV because I had just had the > achalasia ballon done. > After all was done and blood tests and stuff came back normal with no > heart damage, well I was happy.  I was still on nitro drip and heparin > to keep my blood thin. > Doc think that a change in heart meds and bp meds were in order, since > the heart rhythm is nothing to hurt you just damn scarey. She did say > there was a drug for that but IF given as some very nasty bad side > effects and did not want that.  Hell me neither.  So she put me on a > heart rate regulator and more nitro to move the food down the sluggish > esophagus.  We discussed that this maybe due to the MCTD but NO one > wants to put a blanket diagnosis as to where the problem is coming from. > So they treat the problem. > Well this morning ready to go home Janers.  yep out of bed took a bath > and boom, could not breath. > More tests, more IV’s and nuclear scan and stress test.  I won.  NO > damage noted so the doc thinks indeed this maybe muscular because as I > was walking the stabbing pain came back into the chest.  like a knife > off and on.  She thinks the MCTD has either hit the above or even the > lungs.  I have symptoms of scleroderma so we will see.  She is sending > everything to my rheumy to view. > I think that is it.  I think that the muscle in my chest wall are just > plain tight and that maybe the cause. > But damn it is scarey.  Makes the heart pound and pressure build.  She > said even if you don’t react to it yourself, your body will and that is > what makes the increase in pain and heart and bp. > So here we are.  Popping more meds and making damn sure I take some more > pain pills.  This tummy thing is out of hand and now the chest mucles. > I am going to put me larger electrodes on with my tens and numb the > sucker LOL. > I will try anything to stop having this feeling.  very scarey. > I had oh my, lots of messages and can not possibly get to all of you, so > this is my way or doing so.. > Hope you all are ok, and I will read tomorrow and catch up the best I > can.. > God Bless you all > janers

Response:

Question:

Is anyone familiar with MCT oil?  Someone with scleroderma asked me about this, and I’ve never heard of it, or what it might be used for.  Please respond if you have any information.  Thanks. Ronni

Response:

Here are a couple more links I ran across: http://www.hcrc.org/faqs/mct.html http://www.swmed.edu/home_pages/news/mct.htm Judy RSM USF <rsm…@aol.com> wrote in message

news:19990828105542.06600.00001126@ng-fp1.aol.com… – Hide quoted text — Show quoted text -> Is anyone familiar with MCT oil?  Someone with scleroderma asked me about this, > and I’ve never heard of it, or what it might be used for.  Please respond if > you have any information.  Thanks. > Ronni

Response:

http://www.swmed.edu/library/consumer/mctoil.htm – Hide quoted text — Show quoted text -RSM USF wrote in message <19990828105542.06600.00001…@ng-fp1.aol.com>… >Is anyone familiar with MCT oil?  Someone with scleroderma asked me about this, >and I’ve never heard of it, or what it might be used for.  Please respond if >you have any information.  Thanks. >Ronni

Response:

Hi Ronni!  I have heard of MCT oil but that was several years ago.  If I am remembering correctly, it was used for digestive problems, (constipation, diarrhea).  I will check my old newsletters and see if I can get more definite information.   Susan – Hide quoted text — Show quoted text -RSM USF wrote: > Is anyone familiar with MCT oil?  Someone with scleroderma asked me about this, > and I’ve never heard of it, or what it might be used for.  Please respond if > you have any information.  Thanks. > Ronni

Response:

Question:

Between the medications I take and my sedentary lifestyle, I’ve gained a lot of weight in recent years.  It’s very depressing.  I try to motivate myself to exercise, and it works from time to time — but not enough.  Getting motivated to exercise is tough for everyone, and when your energy is depleted from a disease, too, it’s doubly hard.   I rationalize that I’ve lost many pleasures with this illness.  Food is one pleasure I still really enjoy, so I try not to beat myself up about it too much.  How many smiling joggers have you seen lately, anyway?! I will start exercising again….tomorrow. -Ronni- *********************************** Building Awareness for Scleroderma Is Crucial to Finding a Cure Scleroderma Foundation (1/800-722-HOPE)

Response:

You dont, they are always frowning or have a pinched look on their faces. This is why I would prefer an eatathon to raise funds. Down here it could be oysters, mudbugs(crawfish) or watermelon. Sometimes exercising my brain is enough workout in one day but I do try to walk as it helps eliminate stress. Being diabetic like Gigi is too we are limited in what we cant or can eat, but hey I love my foods especially cajun,italian and mexican and I dive in and enjoy!!!!!! Love and Hugs Colleen – Hide quoted text — Show quoted text -RSM USF wrote: > Between the medications I take and my sedentary lifestyle, I’ve gained a lot of > weight in recent years.  It’s very depressing.  I try to motivate myself to > exercise, and it works from time to time — but not enough.  Getting motivated > to exercise is tough for everyone, and when your energy is depleted from a > disease, too, it’s doubly hard. > I rationalize that I’ve lost many pleasures with this illness.  Food is one > pleasure I still really enjoy, so I try not to beat myself up about it too > much.  How many smiling joggers have you seen lately, anyway?! > I will start exercising again….tomorrow. > -Ronni- > *********************************** > Building Awareness for Scleroderma > Is Crucial to Finding a Cure > Scleroderma Foundation (1/800-722-HOPE)

Response:

Yes I think we all are on that diet. I still am when my crazy digestive system allows me to be. << Doris wrote: > Years before I was on a diet and just about everyone here on the newsgroup > also has been on it. It is called SEAFOOD DIET? I sea food and I eat it. LOL > Doris >>Colleen wrote:

<< I would like to enjoy some of lifes simple pleasures every once in awhile. Love and Hugs Colleen  >>

Response:

Years before I was on a diet and just about everyone here on the newsgroup also has been on it. It is called SEAFOOD DIET? I sea food and I eat it. LOL Doris

Response:

Me too Doris! My problem is that I am still on it. Between the do’s and dont’s for the IBS and the diabetes its like rabbit food and cardboard and I am not a rabbit or a termite. Living in the south and growing up in the southwest, I love my corn bread and tortilla chips and once a month I allow these just to keep me happy. And as Ed put it "if found unconcesious administer chocolate". We only live once on this planet that I know of (please if you believe in reincarnation dont send me nasty mail) And I would like to enjoy some of lifes simple pleasures every once in awhile. Love and Hugs Colleen – Hide quoted text — Show quoted text -Doris wrote: > Years before I was on a diet and just about everyone here on the newsgroup > also has been on it. It is called SEAFOOD DIET? I sea food and I eat it. LOL > Doris

Response:

Question:

I wonder if you might circulate this message for me among your chat group and perhaps others to help me collect information.  My sister with systemic scleroderma is very sick.  Pat (sister) was diagnosed last year around February but we believe that she carried this disease for much longer than that because of the course the disease has taken with her. She suffers with calcifications on her elbows, feet like most people with the scleroderma but the doctors are puzzled about Pat’s immune system being in such an "overdrive" that it cannot seem to be controlled and is wreaking havoc on her physically.  Of the latest afflictions Pat suffers with her disease, her eyes are affected.  It is not the dry eye syndrome, but she has calcifications on her eyes which have caused severe pain and loss of vision. The opthalmologist that is part of the physician team responsible for Pat’s medication increased the steroids she takes on an ongoing basis to 60 mg a day which she was taking with the methotrexate used to control (although it is not) the effects of the scleroderma.  Because the increase in the steroids along with the methotrexate is not obtaining the results that the doctor felt was needed to keep Pat from losing her eye/eyes, this week she was put on "azathoprine" which is an immunosuppressive with extreme side effects of the cancer causing variety….anyway it is a last ditch effort to get Pat’s immune system under control so that she does not lose her eye by, and this is the opthalmologists exact wording, "your eye will liquefy."  If this disease is not horrendous enough, Pat losing her eye on top of it will be shattering.  Can you see if anyone in your group or any of the other groups know of this medication, it’s success in treating scleroderma or any others that are suffering the same effects that Pat suffers.  We just don’t know how long Pat has, but at the rate her disease is going it appears that she is doomed. Please ask your group if they have any information.  Thank you.  Linda Menard ———–== Posted via Deja News, The Discussion Network ==———- http://www.dejanews.com/       Search, Read, Discuss, or Start Your Own    

Response:

I will be happy to pass this email along. – Hide quoted text — Show quoted text -linda.men…@med.va.gov wrote: > I wonder if you might circulate this message for me among your chat group and > perhaps others to help me collect information.  My sister with systemic > scleroderma is very sick.  Pat (sister) was diagnosed last year around > February but we believe that she carried this disease for much longer than > that because of the course the disease has taken with her. > She suffers with calcifications on her elbows, feet like most people with the > scleroderma but the doctors are puzzled about Pat’s immune system being in > such an "overdrive" that it cannot seem to be controlled and is wreaking > havoc on her physically.  Of the latest afflictions Pat suffers with her > disease, her eyes are affected.  It is not the dry eye syndrome, but she has > calcifications on her eyes which have caused severe pain and loss of vision. > The opthalmologist that is part of the physician team responsible for Pat’s > medication increased the steroids she takes on an ongoing basis to 60 mg a > day which she was taking with the methotrexate used to control (although it > is not) the effects of the scleroderma.  Because the increase in the steroids > along with the methotrexate is not obtaining the results that the doctor felt > was needed to keep Pat from losing her eye/eyes, this week she was put on > "azathoprine" which is an immunosuppressive with extreme side effects of the > cancer causing variety….anyway it is a last ditch effort to get Pat’s > immune system under control so that she does not lose her eye by, and this is > the opthalmologists exact wording, "your eye will liquefy."  If this disease > is not horrendous enough, Pat losing her eye on top of it will be shattering. >  Can you see if anyone in your group or any of the other groups know of this > medication, it’s success in treating scleroderma or any others that are > suffering the same effects that Pat suffers.  We just don’t know how long Pat > has, but at the rate her disease is going it appears that she is doomed. > Please ask your group if they have any information.  Thank you.  Linda Menard > ———–== Posted via Deja News, The Discussion Network ==———- > http://www.dejanews.com/       Search, Read, Discuss, or Start Your Own

– We Are Raising Awareness of Scleroderma Providing Support, Information and News Sherry Messick, Surviving Scleroderma http://SclerodermaSupport.com Scleroderma Foundation Greater Washington DC http://SclerodermaSupport.com/SFWashDC "We are all Beacons Of Light for Each Other" Oprah Winfrey

Response:

I wonder if you might circulate this message for me among your chat group and perhaps others to help me collect information.  My sister with systemic scleroderma is very sick.  Pat (sister) was diagnosed last year around February but we believe that she carried this disease for much longer than that because of the course the disease has taken with her. She suffers with calcifications on her elbows, feet like most people with the scleroderma but the doctors are puzzled about Pat’s immune system being in such an "overdrive" that it cannot seem to be controlled and is wreaking havoc on her physically.  Of the latest afflictions Pat suffers with her disease, her eyes are affected.  It is not the dry eye syndrome, but she has calcifications on her eyes which have caused severe pain and loss of vision. The opthalmologist that is part of the physician team responsible for Pat’s medication increased the steroids she takes on an ongoing basis to 60 mg a day which she was taking with the methotrexate used to control (although it is not) the effects of the scleroderma.  Because the increase in the steroids along with the methotrexate is not obtaining the results that the doctor felt was needed to keep Pat from losing her eye/eyes, this week she was put on "azathoprine" which is an immunosuppressive with extreme side effects of the cancer causing variety….anyway it is a last ditch effort to get Pat’s immune system under control so that she does not lose her eye by, and this is the opthalmologists exact wording, "your eye will liquefy."  If this disease is not horrendous enough, Pat losing her eye on top of it will be shattering.  Can you see if anyone in your group or any of the other groups know of this medication, it’s success in treating scleroderma or any others that are suffering the same effects that Pat suffers.  We just don’t know how long Pat has, but at the rate her disease is going it appears that she is doomed. Please ask your group if they have any information.  Thank you.  Linda Menard ———–== Posted via Deja News, The Discussion Network ==———- http://www.dejanews.com/       Search, Read, Discuss, or Start Your Own    

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Question:

Any insights on how to help stop the cough and clear up my lungs. My Scleroderma is also keeping me from sleeping  I cough all night long. Help please…    -**** Posted from Supernews, Discussions Start Here(tm) ****- http://www.supernews.com/ – Host to the the World’s Discussions & Usenet

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> I know Sherry’s been down for a couple of days, so I hope she doesn’t > mind if I post this for you on her behalf. > You may want to try digging in to Sherry Messick’s web site: > Surviving Scleroderma http://www.SclerodermaSupport.com > Also, there are a great many people who have sites dealing with > Scleroderma. This link is off Sherry’s main page: > http://www.SclerodermaSupport.com/sites.htm

Of course I didn’t mind and I appreciate you doing this for me Jaimes. I have pulmonary links on a page also it is http://www.SclerodermaSupport.com/med-lungs.html Feel free to email me anytime and I’ll try to help you find information on the topic you are researching. — *** Love, Hugs and well wishes From *** Sherry Messick, Visit My Site! Surviving Scleroderma http://www.SclerodermaSupport.com "We are all Beacons Of Light for Each Other" Oprah Winfrey Tomorrow is promised to no one. Learn to say ‘I love you’…. Any way you can!

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big…@aol.com wrote: > Any insights on how to help stop the cough and clear up my lungs. My > Scleroderma is also keeping me from sleeping  I cough all night long. > Help please…

I know Sherry’s been down for a couple of days, so I hope she doesn’t mind if I post this for you on her behalf. You may want to try digging in to Sherry Messick’s web site: Surviving Scleroderma http://www.SclerodermaSupport.com Also, there are a great many people who have sites dealing with Scleroderma. This link is off Sherry’s main page: http://www.SclerodermaSupport.com/sites.htm Let us know how you get on! –Jaimes

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The only thing that seems to help me is menthol-eucalyptus cough drops. My husband buys them 5 and 6 bags at a time. It is terrible on my teeth all that sugar but they work. I know how horrible it is to cough all the time. ….Gigi

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yes, use a humidifier in your sleeping area. It makes a super difference every year for me (the sick one) and for my family (the nonsick one). Lack of sufficient moisture in the lungs, especially scarred lungs tends to harbor bacteria and cause colds, coughs, bronchitis and stuff Steph p.s. am not a doc, please consult your for medical advice.

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> yes, use a humidifier in your sleeping area. It makes a super difference > every > year for me (the sick one) and for my family (the nonsick one). Lack of > sufficient moisture in the lungs, especially scarred lungs tends to harbor > bacteria and cause colds, coughs, bronchitis and stuff

I was told it might help my breathing to use a humidifier in my room at night especially during the winter when we have dry heat being pumped into our homes. We did purchase one and I really can’t say if it has or hasn’t helped but I’ll keep you all posted. *** Love, Hugs and well wishes From *** Sherry Messick, Visit My Site! Surviving Scleroderma http://www.SclerodermaSupport.com "We are all Beacons Of Light for Each Other" Oprah Winfrey Tomorrow is promised to no one. Learn to say ‘I love you’…. Any way you can!

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Fresh start should include discussing individuals instead of the person who posted. A comment on the european conference was posted. It was followed by multiple attacks on the poster and nothing on the conference. talk about the statements made-stop attacking the posters. Nancy

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With all the good you have been blessed with why must you attack those that are not as fortunate as you. I am going to join the ranks of several others and leave this group to her. She can argue with herself till dooms day.

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To All the Scleroderma Patients who Come to this area for information: I have answered my last post from the people who I thought I had left behind when I withdrew myself from AOL’s message area. I may have medical experience but it is not within any area related to scleroderma.  My working in a hospital gives me the ability to sometimes have my questions answered by qualified MDs.  Anything else is from my own experience.  I have always asked my own questions and am happy to exchange my personal experiences.  I have been fortunate although being diagnosed for twelve years with systemic SD that I have not developed any internal involvement and have had a mild course.  From what I have seen this is not unusual and my hope has always been that my positive experience could be reassuring to others.  I have had to modify the way I do certain things and have had some difficult times, but overall my worst fears have never materilaized.  I read the News Group almost daily and welcome any questions that I may be able to assist with. Have a Great Holiday  Sharon

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Question:

Just ignore the fool. We all know she is lying. You are a sick perverted freak  Miriam.  What happened? You figured out that your lies were catching up with  you. So now Sherry has a reprieve from you. You are so sick. Sherry, Amie and  everyone at USF you have proven to everyone that you are good, caring people.  What has Miriam proved to us?. That she is nuts is all I can think of. I am the one that brought your husband into it Miriam. Get your threats right. My thoughts on this is that we have been silent enough and has that made her  leave? No it hasn’t. So I think we must show the world the true Miriam.  She’s  doing a good job so far isn’t she?

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>So now Sherry has a reprieve from you.

You must have misunderstood.  I fully intend to invoke the judge- ment tomorrow  at 8:30AM  It will then be up to the major ISPs to decide how to disable this  board and the mailing of the digest.  Sherry is too ill as she stated to make  a court appearance.  However none of her MDs ever documented that.  The  hearing will be held in New York since I initiated the original complaint. I really can’t understand what made you think that there was a reprieve.  Part  of the judgement, and I was not happy with this part was to give Sherry a time  frame to set the record straight.  Well she did just that.  Now I can proceed.   Sherry is beig held responsible for everything that has been said as that was  my contention in the papers filed.  If you feel guilty or resposible acompany  her to court.  I am not writing through Mia43 anylonger as I will be opening a  new account.  Not a single one of you really have a clue as to who I am or  what I look like.  The joke is on you.  It was not meant as a joke but if  Sherry recalls sending a message to me stating that Dr. Medsger’s office had  asked her too that was the end.  No one online has ever heard from Dr. Medsger  or anyone in his office over the PC.  He refuses to ever go online.  Once he  was quoted I knew without a doubt that everything else was fraud.  Sherry also  states in her site that she has met with  and knows  Dr, Medsger.  I copied it  and  gave it to him.  He never heard of her and advises all his patients to  call his clinic directly if there are any questions.  For this he has set up a  system.   It is so funny.  This will be my last post here as I have been  advised to end my part of this.  Your name is probably an altered screen name  but it doesn’t matter.  The people with any intelligence like Amie, Kate  Knance, NancyUSF, KarenVan Horne and Ronni Schulman who by the way I have seen  no one wishing her a speedy recovery, have allowed themselves to be reduced to  responding to my posts.     Yes some of my posts have been very bold, but always honest.  You all kept  on answering.  The more you preached to ignore me.  The more attention I  recieved.  You are all a bunch of cowards.  You could not help but respond.  No self control as you all saw the selfish side of yourselves in each and  every post.  Anyone with an ounce of class knows that if you are honest you  don’t have to dignify every insult with an answer.  I see nothing but guilt in  this area for three full weeks.  You’re all so good and caring let’s see a  volunteer telephone hotline go up.  The Jersey USF office is shutting down.  Marie Coyle in Boston won’t be able to take the time to deal with distraught  patients.  Let me see just two or three of you with the biggest mouths get  something going.  I KNOW it will never materilalize as all you know is   "I  NEED, I WANT, WHERE IS MINE"  scleroderma hasn’t made you sick, selfishness  has.  None of you will ever recover until you are able to reach out.  Yes  there are wonderful, good caring people at the USF.  The USF is a figment of  your imaginations.  It is not many, many offices with fancy furniture and  salaries.  It is each and everyone of you who is wasting their time arguing  about nothing with me.  It helps justify  the time you are wasting instead of  reaching out.  How many of you took the time to see how sick Ronni was.  Who  even sent a cybercard.  They are free you know.   You can all crawl  back into your safe little fantasies as you are on your own.        Good Bye Mia43

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Question:

The Leadership Institute at USF’s conference in Atlanta (Thursday’s session) is useful for anyone who is a chapter or support group leader or any individual who plans to start a new group.

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Contact the United Scleroderma Foundation for more information at 1-800-722-4673.  Thank you. 16th Annual United Scleroderma Foundation Conference Vision of Hope July 31- August 2, 1997, Atlanta, Georgia Agenda (Subject to Change) Thursday, July 31, 1997 8:30 am Continental Breakfast 9:00 am USF Leadership Institute – Part I           Effective patient support over the           telephone; handling crisis calls 11:00 am        USF Leadership Institute – Part II           Tips on running effective support           group and chapter meetings 11:45 am        Morning Break 12:30 pm        Lunch Break (on your own)  2:00  pm       USF Chapter Presidents’ Council         Meeting 3:15  pm        Afternoon Break 3:30  pm        USF Chapter & Support Group information exchange open to all chapter and support groups representatives 5:00  pm        Free Time 6:00  pm        Welcome Cocktail Reception         Light hors d’oeuvres, soft drinks and juices provided (cash bar)   Friday, August 1, 1997  9:00 am        USF Town Hall Meeting         What’s Happening at USF:         Unification efforts, program of work, research programs 10:00 am        Introduction of USF Board Members with Q & A period 10:30 am        Morning Break 11:00 am        Conference Overview 11:20 am        Opening Address 12:00 pm        Lunch Break (on your own)   2:00 pm       Workshop Session I *   3:00 pm       Break   3:15 pm       Workshop Session II *   4:15 pm       Break   4:30 pm       Workshop Session III *   5:30 pm       Free Time   7:00 pm       Dixieland Barbeque Dinner hosted by the Peach B Chapter of USF * Topics listed on reverse side are subject to change  Saturday, August 2, 1997  9:00 am        Overview of Scleroderma  9:45 am        Raynaud’s Phenomenon Diagnosis & treatment 10:30 am        Questions and Answers 10:45 am        Break 11:00 am        Osteoporosis and Quality of Life issues 11:45 am        Doctor-Patient Relationships in scleroderma 12:30 pm        Questions & Answers 12:45 pm        Lunch (on your own)   2:00 pm       Scleroderma Treatments and Research Directions   2:45 pm       Questions & Answers   3:00 pm       TBA   3:45 pm       Pulmonary Involvement   4:30 pm       Questions & Answers   4:45 pm       Free Time   6:30 pm       Cocktail Reception (cash bar)   7:00 pm USF Banquet ——  —–  ——-  —–  —–  —–  —–  —-  —-  —-  —  CUT ALONG DASHED LINE AND RETURN  —- —- —-  —-  —-  —-  —-  —-  —  —  —-  —–  —— 1997 USF Conference Registration Form Name (please print)____________________________________________________________________ _____________ Mailing Address:__________________________________________________________________ __________________ City, State & Zip:_____________________________________________Daytime Phone: (      )_____________________ E-mail Address (if applicable):______________________________________________________________ ___________ Are you a USF Chapter or support group member?    Yes   No   If Yes, which one? __________________________________________________________________________ _______________________   Check Enclosed   Credit Card:    Visa     MasterCard     Amex     Total Amount: $______________________________ Card #_______________________________________________________________________Ex p. Date_____________ Signature: __________________________________________________________________________ _______________ Please indicate your entree for the USF Banquet event (if you are attending the banquet): _______  Prime Rib, Twice baked-potatoe, seasonal vegetables                 ______ Vegetarian Option _______ Chicken Wellington, Herbed New potatoes , seasonal vegetables 1997 Conference Registration Fees CONFERENCE REGISTRATION Full Conference and events                      $80.00         Includes all conference materials; USF Leadership Institute; Friday and Saturday Conference sessions; Dixieland dinner event; USF Annual Banquet; and daily hosted refreshment breaks One Day Conference and One Evening Event        $50.00         Friday or Saturday         Includes all conference materials; one day of conference sessions; one hosted refreshment break; one evening event (Dixieland or USF Banquet) One Day Conference (sessions only)      $25.00 USF Annual Banquet only                         $35.00 Dixieland Dinner only                   $30.00  HOTEL INFORMATION Nightly Room rate…………….$79.00 S/D & tax Sheraton Colony Square Hotel 188 14th Street, N.E. Atlanta, GA 30361 (404) 892-6000 (800) 422-7895 Mention that you are with USF for this special rate. ADA rooms are available at the hotel upon request. Please make arrangements when you make your room reservations. Atlanta Airport Shuttle (round-trip)…….$14.00 Friday Workshop Topics Session I Gastrointestinal Involvement Social Security & Disability Benefits Physical Therapy Techniques Oral Health Localized Scleroderma  Session II Gastrointestinal Involvement Coping with Chronic Illness Occupational Therapy Sjogren’s Syndrome Wound Care  Session III Good Nutrition & Scleroderma Coping with Chronic Illness Make-up and Beauty Techniques Wound Care Stress Management How to Register (Please register before July 15 to allow proper processing time) By Phone         Call 1-800-722-HOPE (4673)         Give your registration information and credit card information By Fax         Complete the registration and credit card information         FAX the form to 1-408-728-3328 By Mail         Complete the registration form with your contact information         Be sure to mark your choice of meals for the USF Banquet         Include your check or money order make payable to USF 1997 conference OR         Complete the credit card information on the form         Mail your registration and payment no later than July 15, 1997, to:         USF 1997 Conference     PO Box 399         Watsonville, CA 95077 ——————-==== Posted via Deja News ====———————–       http://www.dejanews.com/     Search, Read, Post to Usenet

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So, Thursday is mostly just for group leaders or potential new support groups? Amie —————– There’s no waiting worth the misery And there’s no wanting worth the tears… —————–

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Question:

LindaTC wrote: > Does any one know about these symptoms? Are they part of this wretched > dis-ease? & any treatments that eliminate them? > The burning lungs are transitory and traveling. The mucous is annoying.  I > am trying to avoid Predisone.

Linda, I had a lot of mucous when my disease was at it’s worst.  It was particularly bad first thing in the morning when I would normally end up throwing it up.  As I went into remission (for lack of a better term) this problem has gone away as have most of my other lung problems.  I guess I don’t have any specific recommendations for you other than to let you know that it is probably part of scleroderma.  My doctor and I are still trying to decide what put me into remission, the d-pen or my own natural resistance so I can’t even tell you for sure what has helped me. And I would avoid the Pred if I could too.  I was on it for a while and it is *nasty* stuff. Beth G

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Does any one know about these symptoms? Are they part of this wretched dis-ease? & any treatments that eliminate them? The burning lungs are transitory and traveling. The mucous is annoying.  I am trying to avoid Predisone.

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Question:

Does anyone have helpful information on Reynaud’s?  A friend just told me that she has it, and I can’t seem to find any information on what to do about it. Thanks, Dot —  There is more to life than increasing its speed.  - Gandhi

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Does anyone have helpful information on Reynaud’s?  A friend just told me that she has it, and I can’t seem to find any information on what to do about it. Thanks, Dot

Raynaud’s phenomena responds to medications such as Procardia (nifedipine), biofeedback training, and hypnosis.  But because Raynaud’s can be an early sign of a serious rheumatologic or autoimmune disorder (e.g., scleroderma) it is wise to get a thorough medical workup before or in addition to symptomatic approaches of treating this condition. Steve G         In the Warm Arizona-Sonora Desert  Steven Gurgevich, PhD   Behavioral Medicine, Ltd.

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Does anyone have helpful information on Reynaud’s?  A friend just told me that she has it, and I can’t seem to find any information on what to do about it. Thanks, Dot Raynaud’s phenomena responds to medications such as Procardia (nifedipine), biofeedback training, and hypnosis.  But because Raynaud’s can be an early sign of a serious rheumatologic or autoimmune disorder (e.g., scleroderma) it is wise to get a thorough medical workup before or in addition to symptomatic approaches of treating this condition. Steve G

Procardia can also have a multitude of dangerous side effects.  I do agree that a good medical workup is needed.  Reynauds syndrome is also a signal that nerve/bloodvessel "communication" may be decreased . You might also look into Nutritional things ie. Garlic, Ginkgo biloba, Cayenne which help the circulatory system, among other things. Although there is much scientific information on these benefits, you must also realize that long term effects have not been "scientifically established on this, or most alt. therapies for most things, but is DEFINETLY worth looking into.  People have been using this stuff for hundreds, if not thousands of years Take Care Que – Hide quoted text — Show quoted text –        In the Warm Arizona-Sonora Desert Steven Gurgevich, PhD   Behavioral Medicine, Ltd.

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