Re: [TMIC] Living to be 150 - regenerating cells
Hi Candy, I watched it last night. Very interesting and hopeful info. I am not wanting to live to be 100, but it would be nice to get rid of the TM! It sounds like they can do a lot, but still in experimental stage. Linda in Pa **Create a Home Theater Like the Pros. Watch the video on AOL Home. (http://home.aol.com/diy/home-improvement-eric-stromer?video=15ncid=aolhom000301)
[TMIC] DR. PHIL SHOW YESTERDAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
DID ANYONE SEE THAT SHOW? I DO NOT WATCH HIM UNLESS ITS VERY IMPORTANT TO ME. IT WAS ABOUT THE BUG THEY CALL IT. ITS REALLY ABOUT MSRA AND STAPH.THEY SAID THAT NOW MORE PEOPLE WILL DIE FROM THIS THAN AIDS. THEY HAVE CLOSED SCHOOLS DOWN AND HAVE TRIED TO STERILIZE THEM.SO MANY CHILDREN ARE GETTING IT.BOYS FROM THE LOCKER ROOMS ARE GETTING IT FROM PLAYING FOOTBALL. THEY HAD A YOUNG BOY WHO WAS NOT FEELING WELL HE WENT TO THE DOTOR. THEY FOUND HE HAD A TUMOR IN HIS KNEE. HE CAME THRU THE SURGERY FINE AND WENT HOME. HE GOT ILL AGAIN HE WAS BROUGHT TO THE ER. THEY PUT HIM IN ICU.HIS WOUND WAS FINE WHEN HE GOT THERE NO FEVER BUT WITHIN A HOUR HE SPIKED A TEMP OF ALMOST 104. HIS INCISION THEN TURNED RED AND BLACK AND WAS OOZING. HIS FAMILY WAS TOLD HE WOULD DIE IF THEY DID NOT OPERATE BUT PROBALLY WOULD NOT MAKE IT TILL MORNING.ITS LIKE THE FLESH EATING DISEASE THEY SAID.IT CAN ATTACK ALL YOUR ORGANS AND SHUT THEM DOWN. A HOSPITAL IN PITTSBURG HAS CUT IT DOWN BY 85%. EVERYONE SHOULD BE AWARE OF IT.ITS LIKE A CANCER THAN CAN MESTISIZE. WHY DO SO MANY PEOPLE KNOW SO LITTLE ABOUT THIS? THEY HAD DOTORS ON ONE WHO GOT IT. HE LOST PART OF HIS HEEL AND ANKLE. YOU HAVE TO BE MONITORED VERY CAREFULLY. YOU CAN GET IT THEN GET BETTER THEN GET IT AGAIN. A GIRL 19 HAS IT. HERS STARTED WITH A SMALL LUMP UNDER HER ARM PIT. SHE WENT TO THE SURGEON. THEY OPERATED AND SHE WAS IN HORRIBLE PAIN . SHE SAID THE KEPT CHANGING THE PACKING IT DRAINED BUT NO ONE EVER TOLD HER ARE HER MOM SHE HAD MSRA, THEY HAD HER IN ISOLATION THEY ALL WORE PROTECTIVE SUITS THE GLOVES AND MASKS WHILE HER FAMILY WENT IN WITH NOTHING. SO HER MOM ASKED. THEN SHE WAS TOLD SHE HAD MSRA. THE SURGEON SAYS THERE IS NOTHING THEY CAN DO FOR HER. SHE HAS TO SEE A INFECTIOUS DISEASE DOCTOR.WELL THATS WEEKS AWAY AND SHE HAS MORE LUMPS UNDER HER ARM PITS THE SIZE OF PING PONG BALLS.SHE SAID SHE DOES NOT KNOW HOW SHE HAS SURVIVED A YEAR AND SAID IT COULD BE WORSE,IT SHOULD NOT GET WORSE. WHY ARE WE NOT INFORMED OF THIS DREADED DISEASE? PEOPLE NEED TO BE EDUCATED.THIS IS MY FEAR FOR JUDE WHO WAS GOING TO WATCH THE SHOW SHE KNEW ABOUT IT..SEEMS TO ME NOW ALOT OF PEOPLE WILL BE AWARE OF THIS DISEASE.WE SHOULD OF ALONG TIME AGO WHAT WAS GOING ON. I HOPE OTHER HOSPITALS DO WHAT THE ONE IN PITTSBURG DID. THIS IS VERY SCARY ESPECIALLY FOR PEOPLE WITH A WEAK IMMUNE SYSTEM LIKE US. THEY SAID IF YOU FEEL BAD AND IT GETS BETER THAN WORSE GO TO YOUR DOCTOR. THEY ALSO SAID IF SWABS WHERE DONE AND CULTURES THIS WOULD OF NOT GOT SO BAD FOR THESE PATIENTS. THE 11 YEAR OLD BOY DIED, YOU CAN GET IT THRU A CUT JUST ABOUT ANYTHING REALLY. THIS IS TERRIBLY IMPORTANT THAT WE ARE ALL AWARE OF WHAT IS GOING ON.NOW I THINK HOSPITALS WILL CLEAN THEIR ACT UP AND SCHOOLS GYMS ETC. I HOPE SO THEY ARE SAYING THIS WILL KILL MORE THAN AIDS PATIENTS. IF YOU DID NOT SEE IT YOU CAN GO TO DR.PHIL.COM AND GET A COPY OF IT ARE WATCH IT ON YOUR COMPUTER. I HAVE NOT TALKED TO JUDE SINCE THE SHOW BUT SHE IS AWARE HOW SERIOUS THIS IS. YESTERDAY SHE HAD A PRETTY GOOD DAY. DAVE BROUGHT A PICNIC LUNCH TO THE HOSPITAL SHE ENJOYED THAT.IF THIS CAN BE SPREAD THEN WHY DOES DAVE ARE PATII ANYONE WHO VISITS HER WEAR PROTECTIVE GEAR,I NEED TO ASK JUDE. JUDE NEVER SAID SHE WAS IN ISOLATION NOR DID SHE SAY THEY WEAR MASKS ARE SPECIAL SUITS, JUST GLOVES THEY DO THAT FOR ALL PATIENTS. IF ANYONE SAW THE SHOW PLEASE SHARE YOUR THOUGHTS. I KNOW I AM NOT WRITING THIS IN A MORE ACCURATE WAY, TOO MUCH GOING ON NOW IN MY FAMILY I DO HOPE I GOT MY MESSAGE ACROSS, I AM TIRED AND STRESSED NOW BUT I KNOW THINGS WILL BE JUST FINE. GOD BLESS JUDE AND OUR TM FAMILY!! TIAD PAM **Create a Home Theater Like the Pros. Watch the video on AOL Home. (http://home.aol.com/diy/home-improvement-eric-stromer?video=15ncid=aolhom000301)
Re: [TMIC] DR. PHIL SHOW YESTERDAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I am not sure where you are anyone has the idea that we have weak immune systems. If anything our immune systems where working TO well because my doctor told me that the lesion in my cord was caused by a foreign body/virus that was attacked violently in by spinal cord by my immune system. In a message dated 4/2/2008 8:53:38 A.M. Eastern Daylight Time, [EMAIL PROTECTED] writes: DID ANYONE SEE THAT SHOW? I DO NOT WATCH HIM UNLESS ITS VERY IMPORTANT TO ME. IT WAS ABOUT THE BUG THEY CALL IT. ITS REALLY ABOUT MSRA AND STAPH.THEY SAID THAT NOW MORE PEOPLE WILL DIE FROM THIS THAN AIDS. THEY HAVE CLOSED SCHOOLS DOWN AND HAVE TRIED TO STERILIZE THEM.SO MANY CHILDREN ARE GETTING IT.BOYS FROM THE LOCKER ROOMS ARE GETTING IT FROM PLAYING FOOTBALL. THEY HAD A YOUNG BOY WHO WAS NOT FEELING WELL HE WENT TO THE DOTOR. THEY FOUND HE HAD A TUMOR IN HIS KNEE. HE CAME THRU THE SURGERY FINE AND WENT HOME. HE GOT ILL AGAIN HE WAS BROUGHT TO THE ER. THEY PUT HIM IN ICU.HIS WOUND WAS FINE WHEN HE GOT THERE NO FEVER BUT WITHIN A HOUR HE SPIKED A TEMP OF ALMOST 104. HIS INCISION THEN TURNED RED AND BLACK AND WAS OOZING. HIS FAMILY WAS TOLD HE WOULD DIE IF THEY DID NOT OPERATE BUT PROBALLY WOULD NOT MAKE IT TILL MORNING.ITS LIKE THE FLESH EATING DISEASE THEY SAID.IT CAN ATTACK ALL YOUR ORGANS AND SHUT THEM DOWN. A HOSPITAL IN PITTSBURG HAS CUT IT DOWN BY 85%. EVERYONE SHOULD BE AWARE OF IT.ITS LIKE A CANCER THAN CAN MESTISIZE. WHY DO SO MANY PEOPLE KNOW SO LITTLE ABOUT THIS? THEY HAD DOTORS ON ONE WHO GOT IT. HE LOST PART OF HIS HEEL AND ANKLE. YOU HAVE TO BE MONITORED VERY CAREFULLY. YOU CAN GET IT THEN GET BETTER THEN GET IT AGAIN. A GIRL 19 HAS IT. HERS STARTED WITH A SMALL LUMP UNDER HER ARM PIT. SHE WENT TO THE SURGEON. THEY OPERATED AND SHE WAS IN HORRIBLE PAIN . SHE SAID THE KEPT CHANGING THE PACKING IT DRAINED BUT NO ONE EVER TOLD HER ARE HER MOM SHE HAD MSRA, THEY HAD HER IN ISOLATION THEY ALL WORE PROTECTIVE SUITS THE GLOVES AND MASKS WHILE HER FAMILY WENT IN WITH NOTHING. SO HER MOM ASKED. THEN SHE WAS TOLD SHE HAD MSRA. THE SURGEON SAYS THERE IS NOTHING THEY CAN DO FOR HER. SHE HAS TO SEE A INFECTIOUS DISEASE DOCTOR.WELL THATS WEEKS AWAY AND SHE HAS MORE LUMPS UNDER HER ARM PITS THE SIZE OF PING PONG BALLS.SHE SAID SHE DOES NOT KNOW HOW SHE HAS SURVIVED A YEAR AND SAID IT COULD BE WORSE,IT SHOULD NOT GET WORSE. WHY ARE WE NOT INFORMED OF THIS DREADED DISEASE? PEOPLE NEED TO BE EDUCATED.THIS IS MY FEAR FOR JUDE WHO WAS GOING TO WATCH THE SHOW SHE KNEW ABOUT IT..SEEMS TO ME NOW ALOT OF PEOPLE WILL BE AWARE OF THIS DISEASE.WE SHOULD OF ALONG TIME AGO WHAT WAS GOING ON. I HOPE OTHER HOSPITALS DO WHAT THE ONE IN PITTSBURG DID. THIS IS VERY SCARY ESPECIALLY FOR PEOPLE WITH A WEAK IMMUNE SYSTEM LIKE US. THEY SAID IF YOU FEEL BAD AND IT GETS BETER THAN WORSE GO TO YOUR DOCTOR. THEY ALSO SAID IF SWABS WHERE DONE AND CULTURES THIS WOULD OF NOT GOT SO BAD FOR THESE PATIENTS. THE 11 YEAR OLD BOY DIED, YOU CAN GET IT THRU A CUT JUST ABOUT ANYTHING REALLY. THIS IS TERRIBLY IMPORTANT THAT WE ARE ALL AWARE OF WHAT IS GOING ON.NOW I THINK HOSPITALS WILL CLEAN THEIR ACT UP AND SCHOOLS GYMS ETC. I HOPE SO THEY ARE SAYING THIS WILL KILL MORE THAN AIDS PATIENTS. IF YOU DID NOT SEE IT YOU CAN GO TO DR.PHIL.COM AND GET A COPY OF IT ARE WATCH IT ON YOUR COMPUTER. I HAVE NOT TALKED TO JUDE SINCE THE SHOW BUT SHE IS AWARE HOW SERIOUS THIS IS. YESTERDAY SHE HAD A PRETTY GOOD DAY. DAVE BROUGHT A PICNIC LUNCH TO THE HOSPITAL SHE ENJOYED THAT.IF THIS CAN BE SPREAD THEN WHY DOES DAVE ARE PATII ANYONE WHO VISITS HER WEAR PROTECTIVE GEAR,I NEED TO ASK JUDE. JUDE NEVER SAID SHE WAS IN ISOLATION NOR DID SHE SAY THEY WEAR MASKS ARE SPECIAL SUITS, JUST GLOVES THEY DO THAT FOR ALL PATIENTS. IF ANYONE SAW THE SHOW PLEASE SHARE YOUR THOUGHTS. I KNOW I AM NOT WRITING THIS IN A MORE ACCURATE WAY, TOO MUCH GOING ON NOW IN MY FAMILY I DO HOPE I GOT MY MESSAGE ACROSS, I AM TIRED AND STRESSED NOW BUT I KNOW THINGS WILL BE JUST FINE. GOD BLESS JUDE AND OUR TM FAMILY!! TIAD PAM Create a Home Theater Like the Pros. _Watch the video on AOL Home_ (http://home.aol.com/diy/home-improvement-eric-stromer?video=15ncid=aolhom0003 01) . **Planning your summer road trip? Check out AOL Travel Guides. (http://travel.aol.com/travel-guide/united-states?ncid=aoltrv000316)
Re: [TMIC] DR. PHIL SHOW YESTERDAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
*Hi Gaylon,* *In my case---Devic's NMO---I do, in fact have an extremely weak immune system. Because my immune system continued to attack my spinal cord and optic nerves, it became necessary to *shut it down*. Right now, it is depleted by chemo. Even something so trivial as a cold has the potential to escalate and take me out. That being said, you are right, however, that this is not the usual case for a TM patient.* ** *Gracie*
[TMIC] QUESTION
It is funny after having TM for more than 10 years I still don't truly understand it. Do we have weak immune systems or did we merely have an episode in which our immune system did not work properly...a one time (for many of us) thing? Rob in New Jersey
Re: [TMIC] QUESTION
Rob, we get so many different theories from so many doctors and neurologists The answer I've gotten more than any is that it is a one time episode(in most cases) BUT we each have to relearn so much because the lesion in our spinal cord blocks what used to run freely from our brain. We have to learn how to reroute the messages and sometimes it works...sometimes it doesn't. That is why some of us have gone from total paralysis (in my case from the chest down) to being able to walk even tho we cannot actually 'feel' plus we suffer with constant pain, spasms, and temperature sensitivity. Each one of us are so different. A lot also has to do with the degree of the 'attack . A lot also has to do with the amount of PT that we have done. So many questions, huh? It's going to be interesting to read all of the other's answers. Jeanne in Dayton where the sun is shining and looks and feels like Spring!! ---Original Message--- From: Robert Pall Date: 4/2/2008 12:09:42 PM To: tmic-list@eskimo.com Subject: [TMIC] QUESTION It is funny after having TM for more than 10 years I still don't truly understand it. Do we have weak immune systems or did we merely have an episode in which our immune system did not work properly a one time (for many of us) thing? Rob in New Jersey
RE: [TMIC] queston
Funny how one persons good news is another prsons bad. Whereas Jeanne is excited (rightfully so) that she can feel temperature...I am upset that my left leg that has never in 10 years felt temperature is now freezing or burning...I am not sure how to describe it other than lousy! Rob in New Jersey -Original Message- From: Akua [mailto:[EMAIL PROTECTED] Sent: Wednesday, April 02, 2008 1:40 PM To: tmic-list@eskimo.com Subject: Re: [TMIC] queston Good news!!! I've been noticing a change where I can feel temperature on my skin on the left side which is the one that has never been able to feel temps! I felt a cool sensation when I was taking off my clothes and then felt the warmth of the shower! I could even feel it on my old butt and thigh!! It still feels numb inside but this is a REAL change! I would do cartwheels if I could!! Jeanne in Dayton Jeanne, This made me cry with joy for you! Thank you for sharing this as it gives me hope! YAY Akua -- http://www.akuadesigns.etsy.com http://www.artfarm.com http://www.absolutearts.com/portfolios/a/akualezli/
RE: [TMIC] QUESTION
Me, too!! It seems my immune system is stronger and each time the flu or colds go around I might seem to 'start' it but my body seems to fight it off! I have been really healthy as far as flu and colds! I was just thinking of that very thing during the flu and cold season last Fall! Good point to ponder! Jeanne ---Original Message--- From: Robert Pall Date: 4/2/2008 12:34:19 PM To: jrushton Subject: RE: [TMIC] QUESTION Jeanne: It is strange...at least for me it seems I have gotten ill less since TM ..go figure! Rob From: jrushton [mailto:[EMAIL PROTECTED] Sent: Wednesday, April 02, 2008 11:23 AM To: Robert Pall; tmic-list@eskimo.com Subject: Re: [TMIC] QUESTION Rob, we get so many different theories from so many doctors and neurologists The answer I've gotten more than any is that it is a one time episode(in most cases) BUT we each have to relearn so much because the lesion in our spinal cord blocks what used to run freely from our brain. We have to learn how to reroute the messages and sometimes it works...sometimes it doesn't. That is why some of us have gone from total paralysis (in my case from the chest down) to being able to walk even tho we cannot actually 'feel' plus we suffer with constant pain, spasms, and temperature sensitivity. Each one of us are so different. A lot also has to do with the degree of the 'attack . A lot also has to do with the amount of PT that we have done. So many questions, huh? It's going to be interesting to read all of the other's answers. Jeanne in Dayton where the sun is shining and looks and feels like Spring!! ---Original Message--- From: Robert Pall Date: 4/2/2008 12:09:42 PM To: tmic-list@eskimo.com Subject: [TMIC] QUESTION It is funny after having TM for more than 10 years I still don't truly understand it. Do we have weak immune systems or did we merely have an episode in which our immune system did not work properly a one time (for many of us) thing? Rob in New Jersey
[TMIC] JUDE Help How?
I've been grieving, so was behind on Jude's trials. I am willing and able to call. I can be articulate and polite while irate and express my concern and their need to improve, reform, make immediate amends. However, the last e-mail I read is saying not to call or write? Please clarify. I was in a nursing home and it was hell! I want to help! Akua -- http://www.akuadesigns.etsy.com http://www.artfarm.com
Fwd: [TMIC] DR. PHIL SHOW YESTERDAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
From: GAYLON123 To: Bgunny7682 Sent: 4/2/2008 4:18:12 P.M. Eastern Daylight Time Subj: Re: [TMIC] DR. PHIL SHOW YESTERDAY! If this would be the diag. then I see it as: The immune system simply Malfunctioned and put a real hurt on us. In a message dated 4/2/2008 3:39:10 P.M. Eastern Daylight Time, Bgunny7682 writes: No, that's not true. What happened is, a virus invaded your body, your immune system was not able to identify it, and subsequently, the immune system attacked itself. Gunny Planning your summer road trip? Check out _AOL Travel Guides_ (http://travel.aol.com/travel-guide/united-states?ncid=aoltrv000316) . Planning your summer road trip? Check out _AOL Travel Guides_ (http://travel.aol.com/travel-guide/united-states?ncid=aoltrv000316) . **Planning your summer road trip? Check out AOL Travel Guides. (http://travel.aol.com/travel-guide/united-states?ncid=aoltrv000316)
Re: [TMIC] QUESTION
Terry's immune system has improved over the past few years. Initially after TM, he would get a cold which would last several weeks, as well as bronchitis for 3 mos. We were very careful as to who he was exposed to. Now, I am catching everything that goes around, and his effects are minimal, even as we have the 3 little grandkids around who constantly have colds, etc.! **Planning your summer road trip? Check out AOL Travel Guides. (http://travel.aol.com/travel-guide/united-states?ncid=aoltrv000316)
RE: [TMIC] QUESTION
I was told the reason I don't get sick is because of the immune system is way high...I haven't been sick but twice in my life. Debi Wall T4 incomplete Spastic Paraplegic ---Original Message--- From: jrushton Date: 4/2/2008 10:50:00 AM To: Robert Pall; tmic-list@eskimo.com Subject: RE: [TMIC] QUESTION Me, too!! It seems my immune system is stronger and each time the flu or colds go around I might seem to 'start' it but my body seems to fight it off! I have been really healthy as far as flu and colds! I was just thinking of that very thing during the flu and cold season last Fall! Good point to ponder! Jeanne ---Original Message--- From: Robert Pall Date: 4/2/2008 12:34:19 PM To: jrushton Subject: RE: [TMIC] QUESTION Jeanne: It is strange...at least for me it seems I have gotten ill less since TM ..go figure! Rob From: jrushton [mailto:[EMAIL PROTECTED] Sent: Wednesday, April 02, 2008 11:23 AM To: Robert Pall; tmic-list@eskimo.com Subject: Re: [TMIC] QUESTION Rob, we get so many different theories from so many doctors and neurologists The answer I've gotten more than any is that it is a one time episode(in most cases) BUT we each have to relearn so much because the lesion in our spinal cord blocks what used to run freely from our brain. We have to learn how to reroute the messages and sometimes it works...sometimes it doesn't. That is why some of us have gone from total paralysis (in my case from the chest down) to being able to walk even tho we cannot actually 'feel' plus we suffer with constant pain, spasms, and temperature sensitivity. Each one of us are so different. A lot also has to do with the degree of the 'attack . A lot also has to do with the amount of PT that we have done. So many questions, huh? It's going to be interesting to read all of the other's answers. Jeanne in Dayton where the sun is shining and looks and feels like Spring!! ---Original Message--- From: Robert Pall Date: 4/2/2008 12:09:42 PM To: tmic-list@eskimo.com Subject: [TMIC] QUESTION It is funny after having TM for more than 10 years I still don't truly understand it. Do we have weak immune systems or did we merely have an episode in which our immune system did not work properly a one time (for many of us) thing? Rob in New Jersey
Re: [TMIC] QUESTION
I HAVEN'T BEEN SICK ALL THAT MUCH EITHER SINCE TM HIT. MY SYSTEM'S ONE WEAKNESS IS SINUS INFECTIONS. I BELIEVE THAT IS WHAT INITIALLY CAUSED ALL THE PROBLEMS. I THINK I TOLD YOU I HAD A ROUGH 2 MONTHS AND WHEN I HAD AN MRI DONE, SINUS INFECTION WAS BACK AFTER 5 YEARS. A WEEK AFTER ANTIBIOTICS I STARTED FEELING GREAT. MY SINUSES ARE GETTING WORSE AGAIN AND I AM NOT HAPPY! LINDA IN PA **Planning your summer road trip? Check out AOL Travel Guides. (http://travel.aol.com/travel-guide/united-states?ncid=aoltrv000316)
RE: [TMIC] QUESTION
Interesting. Other than the virus I had 3 wks prior to TM I was rather healthy other than occasional minor colds. I did get another virus about 4 wks ago than landed me on the couch for about 3 days. Rita bradebi [EMAIL PROTECTED] wrote: I was told the reason I don't get sick is because of the immune system is way high...I haven't been sick but twice in my life. Debi Wall T4 incomplete Spastic Paraplegic ---Original Message--- From: jrushton Date: 4/2/2008 10:50:00 AM To: Robert Pall; tmic-list@eskimo.com Subject: RE: [TMIC] QUESTION Me, too!! It seems my immune system is stronger and each time the flu or colds go around I might seem to 'start' it but my body seems to fight it off! I have been really healthy as far as flu and colds! I was just thinking of that very thing during the flu and cold season last Fall! Good point to ponder! Jeanne ---Original Message--- From: Robert Pall Date: 4/2/2008 12:34:19 PM To: jrushton Subject: RE: [TMIC] QUESTION Jeanne: It is strange...at least for me it seems I have gotten ill less since TM ..go figure! Rob From: jrushton [mailto:[EMAIL PROTECTED] Sent: Wednesday, April 02, 2008 11:23 AM To: Robert Pall; tmic-list@eskimo.com Subject: Re: [TMIC] QUESTION Rob, we get so many different theories from so many doctors and neurologists The answer I've gotten more than any is that it is a one time episode(in most cases) BUT we each have to relearn so much because the lesion in our spinal cord blocks what used to run freely from our brain. We have to learn how to reroute the messages and sometimes it works...sometimes it doesn't. That is why some of us have gone from total paralysis (in my case from the chest down) to being able to walk even tho we cannot actually 'feel' plus we suffer with constant pain, spasms, and temperature sensitivity. Each one of us are so different. A lot also has to do with the degree of the 'attack . A lot also has to do with the amount of PT that we have done. So many questions, huh? It's going to be interesting to read all of the other's answers. Jeanne in Dayton where the sun is shining and looks and feels like Spring!! ---Original Message--- From: Robert Pall Date: 4/2/2008 12:09:42 PM To: tmic-list@eskimo.com Subject: [TMIC] QUESTION It is funny after having TM for more than 10 years I still don't truly understand it. Do we have weak immune systems or did we merely have an episode in which our immune system did not work properly a one time (for many of us) thing? Rob in New Jersey
Re: [TMIC] QUESTION
You are in my thoughts and in my little prayer pot, Gerry, and I know God will give you strength to get through this. The hardest part is letting go so he can take over.. Jeanne ---Original Message--- From: Gerry Surette Date: 4/2/2008 4:52:52 PM To: [EMAIL PROTECTED] Subject: Re: [TMIC] QUESTION Hi: this is gerry; I believe recent conversation has helped me immemsly Inow have ITP on top tm.I am quite discouraged; I read your emails with great interest' you encourage me especially since on april 29th they will remove my spleen; in the meantime I have to go through iv hemagolibal n for 4 days For you have not gone through this. it is five hours of iv cold as you can tolerate four five hours; The side efrects are fever and cold spasims which I have already with TM. I need your prayers more than ever.Idon'tknow howI ill get through this I pray the Lord to give me strenght but sometimes I feel it is not enough'I releate to Jude She is my inspiration. Lord what she has gone through: I trust in the Lord to show me the way but right now I feel discouraged and dispondant please pray for me and allthpose of us who go through TM every day; gerry From: jrushton [EMAIL PROTECTED] To: Robert Pall [EMAIL PROTECTED], tmic-list@eskimo.com Subject: Re: [TMIC] QUESTION Date: Wed, 2 Apr 2008 10:23:29 -0500 (Central Daylight Time) Rob, we get so many different theories from so many doctors and neurologists The answer I've gotten more than any is that it is a one time episode(in most cases) BUT we each have to relearn so much because the lesion in our spinal cord blocks what used to run freely from our brain. We have to learn how to reroute the messages and sometimes it works...sometimes it doesn't. That is why some of us have gone from total paralysis (in my case from the chest down) to being able to walk even tho we cannot actually 'feel' plus we suffer with constant pain, spasms, and temperature sensitivity. Each one of us are so different. A lot also has to do with the degree of the 'attack . A lot also has to do with the amount of PT that we have done. So many questions, huh? It's going to be interesting to read all of the other's answers. Jeanne in Dayton where the sun is shining and looks and feels like Spring!! ---Original Message--- From: Robert Pall Date: 4/2/2008 12:09:42 PM To: tmic-list@eskimo.com Subject: [TMIC] QUESTION It is funny after having TM for more than 10 years I still don't truly understand it. Do we have weak immune systems or did we merely have an episode in which our immune system did not work properly a one time (for many of us) thing? Rob in New Jersey
RE: [TMIC] QUESTION
I got sick while in the hospital and nursing home. I KNOW that in one case it was because the hordes of people and children visiting a matriarch ( up to 30 holding a prayer meeting) brought germs. In another case, it was sick aides. I told her/them that the clipboard that she sneezed on and laid on my bed was a disease vector. Since my release - March 2006-- I haven't had a cold or UTI or flu or anything ( knock on wood). I was asked if I had a flu shot when i was diagnosed with my second (or continuing) bout of TM. I hadn't that year as it was in short supply but I had not had the flu for years. I'm inclined to think that my TM is a result of my immune system going overboard and internal misdiagnosis not about weak but strong the b12 theory is interesting, I was told to take more and to up my folic acid. Akua -- http://www.akuadesigns.etsy.com http://www.artfarm.com
Re: [TMIC] queston
I ditto your sentiments Rob. Same Same for me. Heather in Calgary - Original Message - From: Robert Pall [EMAIL PROTECTED] To: Akua [EMAIL PROTECTED]; tmic-list@eskimo.com Sent: Wednesday, April 02, 2008 11:45 AM Subject: RE: [TMIC] queston Funny how one persons good news is another prsons bad. Whereas Jeanne is excited (rightfully so) that she can feel temperature...I am upset that my left leg that has never in 10 years felt temperature is now freezing or burning...I am not sure how to describe it other than lousy! Rob in New Jersey -Original Message- From: Akua [mailto:[EMAIL PROTECTED] Sent: Wednesday, April 02, 2008 1:40 PM To: tmic-list@eskimo.com Subject: Re: [TMIC] queston Good news!!! I've been noticing a change where I can feel temperature on my skin on the left side which is the one that has never been able to feel temps! I felt a cool sensation when I was taking off my clothes and then felt the warmth of the shower! I could even feel it on my old butt and thigh!! It still feels numb inside but this is a REAL change! I would do cartwheels if I could!! Jeanne in Dayton Jeanne, This made me cry with joy for you! Thank you for sharing this as it gives me hope! YAY Akua -- http://www.akuadesigns.etsy.com http://www.artfarm.com http://www.absolutearts.com/portfolios/a/akualezli/ -- No virus found in this incoming message. Checked by AVG. Version: 7.5.519 / Virus Database: 269.22.4/1355 - Release Date: 4/1/2008 5:37 PM
Re: [TMIC] RE: tmic-digest Digest V2008 #143
I was visiting Jude when the PA for the infectious disease doctor checked on her last Friday. He told her that she would be on antibiotics for at least six weeks and they were using vancomycin, but would likely combine it with others depending on her cultures. The term osteomyelitis was used by her RN. We both told her we'd had enough of this Myelitis stuff! Patti - Michigan marieke dufresne [EMAIL PROTECTED] wrote: re Jude... My mom had open heart surgery last year and ended up with an MRSA infection that attacked the bone (which is called osteomyeltis btw), she had 2 courses of vancomycin, and then 3 rounds of oral meds b/c there was one pocket that was still filling up with pus and whatnot. MRSA is quite common and i's getting nastier. I am currently a 3rd year nursing student (graduate in 6 weeks) and work on a Cardiac Surgery Neurosurgery floor and we get many patients' with MRSA infections after. It's not fun. I wish Jude well. Marieke (TM @ T1 since March 18th, 2004) Date: Mon, 31 Mar 2008 21:15:11 -0700 From: [EMAIL PROTECTED] Subject: tmic-digest Digest V2008 #143 To: [EMAIL PROTECTED] --Forwarded Message Attachment-- tmic-digest DigestVolume 2008 : Issue 143 Today's Topics: Re: [TMIC] queston[ Jenna [EMAIL PROTECTED] ] Re: [TMIC] JUDE! [ [EMAIL PROTECTED] ] Re: [TMIC] JUDE'S HOME ADDRESS[ [EMAIL PROTECTED] ] [TMIC] This Is a Test [ [EMAIL PROTECTED] ] Re: [TMIC] This Is a Test [ Grace M. [EMAIL PROTECTED] ] Re: [TMIC] This Is a Test [ [EMAIL PROTECTED] ] Re: [TMIC] This Is a Test (for all) [ Lawrence King [EMAIL PROTECTED] ] Re: [TMIC] This Is a Test (for all) [ [EMAIL PROTECTED] ] [TMIC] April Birthdays[ [EMAIL PROTECTED] ] --Forwarded Message Attachment-- Date: Mon, 31 Mar 2008 09:27:17 -0700 From: [EMAIL PROTECTED] To: [EMAIL PROTECTED]; tmic-list@eskimo.com Subject: Re: [TMIC] queston Rob, Get it checked out. I know you are scared. All of us that have had relapses were scared too. But the sooner you see the Dr. the better. Let us know how you are doing, ok! And just so you know I have had times where my symptoms increased and it was a relapses and times when it wasn't. So it is really hard to tell. Jenna - Original Message From: Robert Pall [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Monday, March 31, 2008 9:00:31 AM Subject: [TMIC] queston Need a little help! After more than 10 years I started having new symptoms in my left (the good one) leg. My left leg has always had pins needles…but this weekend I had the burning (freezing) sensation and although it has not gotten worse..it has not gone back to what I call normal. I have e mailed Dr. Kerr and hopefully he will supply some in sight. I also want to thank members on the list who have given me names of Nerros in New Jersey that they use and are happy with…I will contact at least one of them. In all honesty I am somewhat afraid! I thought I have been dealing with TM in as positive way as is possible. I just don't know if I could handle another episode especially if It requires hospitalization. I know all of us do not have one day that is exactly the same as the previous one…but have any of you experienced new feelings (good or bad) that was not a result of a relapse? If this continues I doubt if I can continue working as the discomfort does not allow me to concentrate on my work. I can only focus on the new feeling of burning! Thank you for any insight you can provide. Rob in New Jersey OMG, Sweet deal for Yahoo! users/friends: Get A Month of Blockbuster Total Access, No Cost. W00t--Forwarded Message Attachment-- Date: Mon, 31 Mar 2008 13:26:25 -0400 From: [EMAIL PROTECTED] To: [EMAIL PROTECTED]; tmic-list@eskimo.com Subject: Re: [TMIC] JUDE!! I just got off the phone with Jude.can't add much to what Pam has already told us. they have her on Vancomycin which is the antibiotic for MRSA along with seven other antibiotics. They will do a six week course and then take a break and then another six week course of the antibiotics. The infection is in the bone and blood stream. She told me if this doesn't work and it turns septic then it's bye-bye. Jude knows what's waiting for her on the other side if that happens so she is really handling all of this well. She was cheerful with meeven got her to laugh once. :-) She started getting sleepy so I let her go with the promise I would call in a few days. Dave is retired as of today and they are both happy about that.Jude is planning on spending some quality time with him now. Please keep those cards, letters, etc. heading her waythey mean so much to her
Re: [TMIC] Premature?
You just made me laugh right out loud! Thanks for the chuckle! Patti - Michigan [EMAIL PROTECTED] wrote: OH MY GOD!! I SENT OUT THAT REPLY TOO EARLY THIS MORNING! I WAS 6 POUNDS, NOT 16. SORRY!!! LINDA IN PA **Create a Home Theater Like the Pros. Watch the video on AOL Home. (http://home.aol.com/diy/home-improvement-eric-stromer?video=15ncid=aolhom000301)
Re: [TMIC] Re: Baclofen
I take 10mg Baclofen every 6 hours and wouldn't want to be without it. Stay on as low dose as possible and build up graqduallt if possible. You might experience additional fatigue in the beginning, but the fatigue is worth the relief from the muscle pain. Patti - Michigan [EMAIL PROTECTED] wrote: Whenever I have an infection, my whole body aches. I currently have a UTI and I am in such pain from my waist down. It's stiffness that bothers me 24/7. My neuro prescribed baclofen to help with the stiffness and spacticity? Has anyone had success with this? Myrna ** Create a Home Theater Like the Pros. Watch the video on AOL Home. (http://home.aol.com/diy/home-improvement-eric-stromer?video=15amp; ncid=aolhom000301)
Re: [TMIC] DR. PHIL SHOW YESTERDAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Jude isn't in isolation, however she is in a private room. I wasn't required to wear protective clothing and neither did any of the hospital staff. I asked her RN the first day and was told it is spread by touch not by breathing. That is why it is importand to keep our own cuts covered. I wash my hands before I leave her room. Patti - Michigan [EMAIL PROTECTED] wrote: DID ANYONE SEE THAT SHOW? I DO NOT WATCH HIM UNLESS ITS VERY IMPORTANT TO ME. IT WAS ABOUT THE BUG THEY CALL IT. ITS REALLY ABOUT MSRA AND STAPH.THEY SAID THAT NOW MORE PEOPLE WILL DIE FROM THIS THAN AIDS. THEY HAVE CLOSED SCHOOLS DOWN AND HAVE TRIED TO STERILIZE THEM.SO MANY CHILDREN ARE GETTING IT.BOYS FROM THE LOCKER ROOMS ARE GETTING IT FROM PLAYING FOOTBALL. THEY HAD A YOUNG BOY WHO WAS NOT FEELING WELL HE WENT TO THE DOTOR. THEY FOUND HE HAD A TUMOR IN HIS KNEE. HE CAME THRU THE SURGERY FINE AND WENT HOME. HE GOT ILL AGAIN HE WAS BROUGHT TO THE ER. THEY PUT HIM IN ICU.HIS WOUND WAS FINE WHEN HE GOT THERE NO FEVER BUT WITHIN A HOUR HE SPIKED A TEMP OF ALMOST 104. HIS INCISION THEN TURNED RED AND BLACK AND WAS OOZING. HIS FAMILY WAS TOLD HE WOULD DIE IF THEY DID NOT OPERATE BUT PROBALLY WOULD NOT MAKE IT TILL MORNING.ITS LIKE THE FLESH EATING DISEASE THEY SAID.IT CAN ATTACK ALL YOUR ORGANS AND SHUT THEM DOWN. A HOSPITAL IN PITTSBURG HAS CUT IT DOWN BY 85%. EVERYONE SHOULD BE AWARE OF IT.ITS LIKE A CANCER THAN CAN MESTISIZE. WHY DO SO MANY PEOPLE KNOW SO LITTLE ABOUT THIS? THEY HAD DOTORS ON ONE WHO GOT IT. HE LOST PART OF HIS HEEL AND ANKLE. YOU HAVE TO BE MONITORED VERY CAREFULLY. YOU CAN GET IT THEN GET BETTER THEN GET IT AGAIN. A GIRL 19 HAS IT. HERS STARTED WITH A SMALL LUMP UNDER HER ARM PIT. SHE WENT TO THE SURGEON. THEY OPERATED AND SHE WAS IN HORRIBLE PAIN . SHE SAID THE KEPT CHANGING THE PACKING IT DRAINED BUT NO ONE EVER TOLD HER ARE HER MOM SHE HAD MSRA, THEY HAD HER IN ISOLATION THEY ALL WORE PROTECTIVE SUITS THE GLOVES AND MASKS WHILE HER FAMILY WENT IN WITH NOTHING. SO HER MOM ASKED. THEN SHE WAS TOLD SHE HAD MSRA. THE SURGEON SAYS THERE IS NOTHING THEY CAN DO FOR HER. SHE HAS TO SEE A INFECTIOUS DISEASE DOCTOR.WELL THATS WEEKS AWAY AND SHE HAS MORE LUMPS UNDER HER ARM PITS THE SIZE OF PING PONG BALLS.SHE SAID SHE DOES NOT KNOW HOW SHE HAS SURVIVED A YEAR AND SAID IT COULD BE WORSE,IT SHOULD NOT GET WORSE. WHY ARE WE NOT INFORMED OF THIS DREADED DISEASE? PEOPLE NEED TO BE EDUCATED.THIS IS MY FEAR FOR JUDE WHO WAS GOING TO WATCH THE SHOW SHE KNEW ABOUT IT..SEEMS TO ME NOW ALOT OF PEOPLE WILL BE AWARE OF THIS DISEASE.WE SHOULD OF ALONG TIME AGO WHAT WAS GOING ON. I HOPE OTHER HOSPITALS DO WHAT THE ONE IN PITTSBURG DID. THIS IS VERY SCARY ESPECIALLY FOR PEOPLE WITH A WEAK IMMUNE SYSTEM LIKE US. THEY SAID IF YOU FEEL BAD AND IT GETS BETER THAN WORSE GO TO YOUR DOCTOR. THEY ALSO SAID IF SWABS WHERE DONE AND CULTURES THIS WOULD OF NOT GOT SO BAD FOR THESE PATIENTS. THE 11 YEAR OLD BOY DIED, YOU CAN GET IT THRU A CUT JUST ABOUT ANYTHING REALLY. THIS IS TERRIBLY IMPORTANT THAT WE ARE ALL AWARE OF WHAT IS GOING ON.NOW I THINK HOSPITALS WILL CLEAN THEIR ACT UP AND SCHOOLS GYMS ETC. I HOPE SO THEY ARE SAYING THIS WILL KILL MORE THAN AIDS PATIENTS. IF YOU DID NOT SEE IT YOU CAN GO TO DR.PHIL.COM AND GET A COPY OF IT ARE WATCH IT ON YOUR COMPUTER. I HAVE NOT TALKED TO JUDE SINCE THE SHOW BUT SHE IS AWARE HOW SERIOUS THIS IS. YESTERDAY SHE HAD A PRETTY GOOD DAY. DAVE BROUGHT A PICNIC LUNCH TO THE HOSPITAL SHE ENJOYED THAT.IF THIS CAN BE SPREAD THEN WHY DOES DAVE ARE PATII ANYONE WHO VISITS HER WEAR PROTECTIVE GEAR,I NEED TO ASK JUDE. JUDE NEVER SAID SHE WAS IN ISOLATION NOR DID SHE SAY THEY WEAR MASKS ARE SPECIAL SUITS, JUST GLOVES THEY DO THAT FOR ALL PATIENTS. IF ANYONE SAW THE SHOW PLEASE SHARE YOUR THOUGHTS. I KNOW I AM NOT WRITING THIS IN A MORE ACCURATE WAY, TOO MUCH GOING ON NOW IN MY FAMILY I DO HOPE I GOT MY MESSAGE ACROSS, I AM TIRED AND STRESSED NOW BUT I KNOW THINGS WILL BE JUST FINE. GOD BLESS JUDE AND OUR TM FAMILY!! TIAD PAM **Create a Home Theater Like the Pros. Watch the video on AOL Home. (http://home.aol.com/diy/home-improvement-eric-stromer?video=15ncid=aolhom000301)
