RE: [TMIC] Questions
My daughters attacked was said to have come from the upper respitory virus that she had a month prior. Tracey L. Black Certified Insurance Service Representative Hockley O'Donnell Insurance Agency P.O. Box 3039 132 Buford Avenue Gettysburg, PA 17325 Phone - 717-334-6741, x 29 Fax - 717-334-3414 Thank you for providing information to us. Please beware that no coverage is bound and no change to your insurance program is confirmed until verified by a licensed agent during regular business hours. If you do not hear from us within 1 business day, please re-contact us in case your information has not been retained. From: Mary Anne Egan [mailto:[EMAIL PROTECTED] Sent: Sunday, October 05, 2008 8:51 PM To: [EMAIL PROTECTED] Cc: [EMAIL PROTECTED]; tmic-list@eskimo.com Subject: Re: [TMIC] Questions I met a woman whose TM was caused by the virus that causes shingles. I met another woman who had shingles and her diagnosis for her resulting paralysis was thought to be TM or Guillane Barre, either way thought to be brought on by shingles also...my daughter's case is thought to be brought on by a virus or a vaccine...no one knows... On Fri, Oct 3, 2008 at 8:03 PM, [EMAIL PROTECTED] wrote: Its funny you should talk about cold sores and herpes virus. I never had a problem with that in the past and that was the first thing I was asked when I got sick (Sept. 05). Right now I have sores on my tongue which is probably some sort of herpes. Very annoying. I am taking an antibiotic but I know that does not kill a virus. 2 of my daughters (grown) also had mild cases of shingles this past year. Maybe we all have the chicken pox virus in our systems. Feel good, Rosalie In a message dated 10/3/2008 2:58:56 P.M. Eastern Daylight Time, [EMAIL PROTECTED] writes: I always hate when my email is filled with forwarded messages. I usually just delete then and very rarely pass them on. I feel exactly the same way. I delete more email, even from my very best friend, who sends me every darn joke out there on the Internet. Every once in a while there are photographs that are too cute and I appreciate those. The political messages I can live without hearing. I know how I feel; I know who I am going to vote for, and I can decide for myself when there are issues on the table to be discussed. What I'm trying to say is this forum is for Transverse Myelitis and I'd like to read email having to do with this disease and how each of us is coping with it on a daily basis. Maybe there are new members wanting to ask questions about TM... Heck~I have a question. Has anyone ever been told that their TM is related to the Herpes virus? When I get sick, I always get a cold sore on the corner of my mouth...never anywhere else. But the doctors say that my herpes viral titers are sky high and can find no reason for them to be like that. Has anyone else been told that TM is caused by a virus? Love, Hugs Prayers. Jude New MapQuest Local shows what's happening at your destination. Dining, Movies, Events, News more. Try it out http://local.mapquest.com/?ncid=emlcntnew0001 ! New MapQuest Local shows what's happening at your destination. Dining, Movies, Events, News more. Try it out http://local.mapquest.com/?ncid=emlcntnew0001 ! -- Mary Anne Egan The Stettler Group, Inc. [EMAIL PROTECTED] (908) 806-3001 (908) 806-3113 Fax
Re: [TMIC] Questions
My TM came on the heels of a bad bout of bronchitis, a miscarriage, and a root canal on one of my molar teeth. Who knows if any of that had anything to do with it. One thing is certain: it was not one of my better years. ;-) Laura On Mon, Oct 6, 2008 at 10:23 AM, Tracey L. Black [EMAIL PROTECTED]wrote: *My daughters attacked was said to have come from the upper respitory virus that she had a month prior.* *Tracey L. Black* *Certified Insurance Service Representative* *Hockley O'Donnell Insurance Agency* *P.O. Box 3039* *132 Buford Avenue* *Gettysburg, PA 17325* *Phone - 717-334-6741, x 29* *Fax - 717-334-3414* ** *Thank you for providing information to us. Please beware that no coverage is bound and no change to your insurance program is confirmed until verified by a licensed agent during regular business hours. If you do not hear from us within 1 business day, please re-contact us in case your information has not been retained.* -- *From:* Mary Anne Egan [mailto:[EMAIL PROTECTED] *Sent:* Sunday, October 05, 2008 8:51 PM *To:* [EMAIL PROTECTED] *Cc:* [EMAIL PROTECTED]; tmic-list@eskimo.com *Subject:* Re: [TMIC] Questions I met a woman whose TM was caused by the virus that causes shingles. I met another woman who had shingles and her diagnosis for her resulting paralysis was thought to be TM or Guillane Barre, either way thought to be brought on by shingles also...my daughter's case is thought to be brought on by a virus or a vaccine...no one knows... On Fri, Oct 3, 2008 at 8:03 PM, [EMAIL PROTECTED] wrote: Its funny you should talk about cold sores and herpes virus. I never had a problem with that in the past and that was the first thing I was asked when I got sick (Sept. 05). Right now I have sores on my tongue which is probably some sort of herpes. Very annoying. I am taking an antibiotic but I know that does not kill a virus. 2 of my daughters (grown) also had mild cases of shingles this past year. Maybe we all have the chicken pox virus in our systems. Feel good, Rosalie In a message dated 10/3/2008 2:58:56 P.M. Eastern Daylight Time, [EMAIL PROTECTED] writes: * I always hate when my email is filled with forwarded messages. I usually just delete then and very rarely pass them on. I feel exactly the same way. I delete more email, even from my very best friend, who sends me every darn joke out there on the Internet. Every once in a while there are photographs that are too cute and I appreciate those. The political messages I can live without hearing. I know how I feel; I know who I am going to vote for, and I can decide for myself when there are issues on the table to be discussed. What I'm trying to say is this forum is for Transverse Myelitis and I'd like to read email having to do with this disease and how each of us is coping with it on a daily basis. Maybe there are new members wanting to ask questions about TM... Heck~I have a question. Has anyone ever been told that their TM is related to the Herpes virus? When I get sick, I always get a cold sore on the corner of my mouth...never anywhere else. But the doctors say that my herpes viral titers are sky high and can find no reason for them to be like that. Has anyone else been told that TM is caused by a virus? Love, Hugs Prayers. Jude * -- New *MapQuest Local* shows what's happening at your destination. Dining, Movies, Events, News more. Try it outhttp://local.mapquest.com/?ncid=emlcntnew0001 ! -- New *MapQuest Local* shows what's happening at your destination. Dining, Movies, Events, News more. Try it outhttp://local.mapquest.com/?ncid=emlcntnew0001 ! -- Mary Anne Egan The Stettler Group, Inc. [EMAIL PROTECTED] (908) 806-3001 (908) 806-3113 Fax
Display Notification: RE: [TMIC] Questions
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Re: [TMIC] Questions
Jude, Yes, I was told my TM was caused by a virus, but I have never had a cold sore in my life. I have had Mono and Rheumatic Fever. The only thing I know that the three of these have in common is the Epstein-Barr virus._Epstein-Barr Virus_ (http://www.cdc.gov/ncidod/diseases/ebv.htm) I had flulike symptoms, three days prior to the onset of my TM, and was paralyzed from the neck down in a matter of 20 minutes. My condition has not improved a whole lot since that day. I'm glad to see that you are at home and doing better. I wish you well. Naomi C4-incomplete, quadriplegic since July 2005 due to Transverse Myelitis **New MapQuest Local shows what's happening at your destination. Dining, Movies, Events, News more. Try it out! (http://local.mapquest.com/?ncid=emlcntnew0001)
Re: [TMIC] Questions
Yes, I was told my TM was caused by a virus, but I have never had a cold sore in my life. T.M. is caused by viruses that don't cause cold sores. My TM virus was probably a Coxackie (sp?) virus Hope that helps F
Re: [TMIC] Questions
I met a woman whose TM was caused by the virus that causes shingles. I met another woman who had shingles and her diagnosis for her resulting paralysis was thought to be TM or Guillane Barre, either way thought to be brought on by shingles also...my daughter's case is thought to be brought on by a virus or a vaccine...no one knows... On Fri, Oct 3, 2008 at 8:03 PM, [EMAIL PROTECTED] wrote: Its funny you should talk about cold sores and herpes virus. I never had a problem with that in the past and that was the first thing I was asked when I got sick (Sept. 05). Right now I have sores on my tongue which is probably some sort of herpes. Very annoying. I am taking an antibiotic but I know that does not kill a virus. 2 of my daughters (grown) also had mild cases of shingles this past year. Maybe we all have the chicken pox virus in our systems. Feel good, Rosalie In a message dated 10/3/2008 2:58:56 P.M. Eastern Daylight Time, [EMAIL PROTECTED] writes: * I always hate when my email is filled with forwarded messages. I usually just delete then and very rarely pass them on. I feel exactly the same way. I delete more email, even from my very best friend, who sends me every darn joke out there on the Internet. Every once in a while there are photographs that are too cute and I appreciate those. The political messages I can live without hearing. I know how I feel; I know who I am going to vote for, and I can decide for myself when there are issues on the table to be discussed. What I'm trying to say is this forum is for Transverse Myelitis and I'd like to read email having to do with this disease and how each of us is coping with it on a daily basis. Maybe there are new members wanting to ask questions about TM... Heck~I have a question. Has anyone ever been told that their TM is related to the Herpes virus? When I get sick, I always get a cold sore on the corner of my mouth...never anywhere else. But the doctors say that my herpes viral titers are sky high and can find no reason for them to be like that. Has anyone else been told that TM is caused by a virus? Love, Hugs Prayers. Jude * -- New *MapQuest Local* shows what's happening at your destination. Dining, Movies, Events, News more. Try it outhttp://local.mapquest.com/?ncid=emlcntnew0001 ! -- New *MapQuest Local* shows what's happening at your destination. Dining, Movies, Events, News more. Try it outhttp://local.mapquest.com/?ncid=emlcntnew0001 ! -- Mary Anne Egan The Stettler Group, Inc. [EMAIL PROTECTED] (908) 806-3001 (908) 806-3113 Fax
RE: [TMIC] Questions
Hair piece! I don't have a hair piece, got a full head of hair! It's a little gray but it's all there! Larry in Oklahoma who is feeling silly! Laughter works if you work it! From: [EMAIL PROTECTED]: Fri, 3 Oct 2008 20:03:29 -0400Subject: Re: [TMIC] QuestionsTo: [EMAIL PROTECTED]; tmic-list@eskimo.com Its funny you should talk about cold sores and herpes virus. I never had a problem with that in the past and that was the first thing I was asked when I got sick (Sept. 05). Right now I have sores on my tongue which is probably some sort of herpes. Very annoying. I am taking an antibiotic but I know that does not kill a virus. 2 of my daughters (grown) also had mild cases of shingles this past year. Maybe we all have the chicken pox virus in our systems. Feel good, Rosalie In a message dated 10/3/2008 2:58:56 P.M. Eastern Daylight Time, [EMAIL PROTECTED] writes: I always hate when my email is filled with forwarded messages. I usually just delete then and very rarely pass them on. I feel exactly the same way. I delete more email, even from my very best friend, who sends me every darn joke out there on the Internet. Every once in a while there are photographs that are too cute and I appreciate those. The political messages I can live without hearing. I know how I feel; I know who I am going to vote for, and I can decide for myself when there are issues on the table to be discussed. What I'm trying to say is this forum is for Transverse Myelitis and I'd like to read email having to do with this disease and how each of us is coping with it on a daily basis. Maybe there are new members wanting to ask questions about TM... Heck~I have a question. Has anyone ever been told that their TM is related to the Herpes virus? When I get sick, I always get a cold sore on the corner of my mouth...never anywhere else. But the doctors say that my herpes viral titers are sky high and can find no reason for them to be like that. Has anyone else been told that TM is caused by a virus? Love, Hugs Prayers. Jude New MapQuest Local shows what's happening at your destination. Dining, Movies, Events, News more. Try it out! New MapQuest Local shows what's happening at your destination. Dining, Movies, Events, News more. Try it out!
Re: [TMIC] Questions
Hi, Jude! So wonderful to be hearing from you and that you are doing better. God bless you, dear one! I was told by the first neuro I saw at the onset that one of the 'theories' for TM was the varicella-zoster (chicken pox virus) which is also the 'causative virus of herpes zoster which makes sense in what your provider says. The virus, once it is in our system, never leaves of can also show up as that horribly painful shingles. Anyone that has been stricken with that can attest to that. Jeanne in Dayton
Re: [TMIC] Questions
Its funny you should talk about cold sores and herpes virus. I never had a problem with that in the past and that was the first thing I was asked when I got sick (Sept. 05). Right now I have sores on my tongue which is probably some sort of herpes. Very annoying. I am taking an antibiotic but I know that does not kill a virus. 2 of my daughters (grown) also had mild cases of shingles this past year. Maybe we all have the chicken pox virus in our systems. Feel good, Rosalie In a message dated 10/3/2008 2:58:56 P.M. Eastern Daylight Time, [EMAIL PROTECTED] writes: I always hate when my email is filled with forwarded messages. I usually just delete then and very rarely pass them on. I feel exactly the same way. I delete more email, even from my very best friend, who sends me every darn joke out there on the Internet. Every once in a while there are photographs that are too cute and I appreciate those. The political messages I can live without hearing. I know how I feel; I know who I am going to vote for, and I can decide for myself when there are issues on the table to be discussed. What I'm trying to say is this forum is for Transverse Myelitis and I'd like to read email having to do with this disease and how each of us is coping with it on a daily basis. Maybe there are new members wanting to ask questions about TM... Heck~I have a question. Has anyone ever been told that their TM is related to the Herpes virus? When I get sick, I always get a cold sore on the corner of my mouth...never anywhere else. But the doctors say that my herpes viral titers are sky high and can find no reason for them to be like that. Has anyone else been told that TM is caused by a virus? Love, Hugs Prayers. Jude New MapQuest Local shows what's happening at your destination. Dining, Movies, Events, News more. _Try it out_ (http://local.mapquest.com/?ncid=emlcntnew0001) ! **New MapQuest Local shows what's happening at your destination. Dining, Movies, Events, News more. Try it out! (http://local.mapquest.com/?ncid=emlcntnew0001)
Re: [TMIC] Questions
AOL EmailJude, it is so good to hear from you! Welcome back - we've missed you, dear lady. I am curious to know why your herpes viral titers are so high when you get sick, especially when you don't have any real symptoms. I know when most of us gave our gallon of blood when first diagnosed, they tested for absolutely everything! No stone unturned. Again, welcome back Jude. Looking forward to hearing more from you. I've missed you!! Hugs, Linda - Original Message - From: [EMAIL PROTECTED]mailto:[EMAIL PROTECTED] To: TMIC-LIST@eskimo.commailto:TMIC-LIST@eskimo.com Sent: Friday, October 03, 2008 12:58 PM Subject: [TMIC] Questions I always hate when my email is filled with forwarded messages. I usually just delete then and very rarely pass them on. I feel exactly the same way. I delete more email, even from my very best friend, who sends me every darn joke out there on the Internet. Every once in a while there are photographs that are too cute and I appreciate those. The political messages I can live without hearing. I know how I feel; I know who I am going to vote for, and I can decide for myself when there are issues on the table to be discussed. What I'm trying to say is this forum is for Transverse Myelitis and I'd like to read email having to do with this disease and how each of us is coping with it on a daily basis. Maybe there are new members wanting to ask questions about TM... Heck~I have a question. Has anyone ever been told that their TM is related to the Herpes virus? When I get sick, I always get a cold sore on the corner of my mouth...never anywhere else. But the doctors say that my herpes viral titers are sky high and can find no reason for them to be like that. Has anyone else been told that TM is caused by a virus? Love, Hugs Prayers. Jude -- New MapQuest Local shows what's happening at your destination. Dining, Movies, Events, News more. Try it outhttp://local.mapquest.com/?ncid=emlcntnew0001!
Re: [TMIC] Questions
I didn't understand that we where talking about herpes virus.
I also, do have herpes virus in my middle finger on my right hand. It's so
bad that I need to take 2 Valtrex a day to keep it uncontrolled.
My bad leg from TM is also my right leg.
So what does this mean for me?
Thanks for bringing up this subject,
Todd in CC, TX
Jill Z [EMAIL PROTECTED] wrote:
Yes Yes and Yes.
They belive my TM is caused by the herpes virus (chicken pox,shingles etc.)
and I believe that too.
Contact me if you have any questions.
Jill
--- On Wed, 6/18/08, L T CHERPESKI [EMAIL PROTECTED] wrote:
From: L T CHERPESKI [EMAIL PROTECTED]
Subject: Re: [TMIC] Questions
To: Todd Tarno [EMAIL PROTECTED], tmic tmic-list@eskimo.com, jrushton
[EMAIL PROTECTED]
Date: Wednesday, June 18, 2008, 8:53 PM
#yiv1225847047 v\:* { } #yiv1225847047 v\:* { }Jeanne, sorry
I think I completely missed this -
1. Yes, age 8
2. NO, thank goodness
3. NO
Linda
- Original Message -
From: jrushton
To: Todd Tarno ; tmic
Sent: Wednesday, June 18, 2008 2:11 PM
Subject: Re: [TMIC] Questions
Thank you, Todd, so much for doing this for me. It's really been
interesting to see what so many have sent me.
Jeanne in Dayton, TM on 5/21/2005, T4
---Original Message---
From: Todd Tarno
Date: 6/18/2008 4:44:42 PM
To: jrushton
Subject: Re: [TMIC] Questions
Jeanne, thank you for doing this survey.
1. Yes, when I was a kid, about 6.
2. Yes, about the same time I had Hepatitis B HIV+ Sept. 7, 1989.
3. NO, very lucky to say that I have never got the shingles again.
Todd in CC, TX TM on April 1, 2002 @ T-4 to T-8
jrushton [EMAIL PROTECTED] wrote:
#yiv1225847047 v\:* { } #yiv1225847047 v\:* { } Hi,
everyone (again!)
I have three questions for those who would be willing to respond:
1) Did you ever have chicken pox?
2) Did you ever suffer from shingles?
3) Did you have a flare-up of shingles prior to your being stricken with TM?
These are a few of the theories with TM and I'm just curious to see if any of
'us' have experienced any or all of these.
Jeanne in Dayton
Re: [TMIC] Questions
Thank you, Todd, so much for doing this for me. It's really been interesting to see what so many have sent me. Jeanne in Dayton, TM on 5/21/2005, T4 ---Original Message--- From: Todd Tarno Date: 6/18/2008 4:44:42 PM To: jrushton Subject: Re: [TMIC] Questions Jeanne, thank you for doing this survey. 1. Yes, when I was a kid, about 6. 2. Yes, about the same time I had Hepatitis B HIV+ Sept. 7, 1989. 3. NO, very lucky to say that I have never got the shingles again. Todd in CC, TX TM on April 1, 2002 @ T-4 to T-8 jrushton [EMAIL PROTECTED] wrote: Hi, everyone (again!) I have three questions for those who would be willing to respond: 1) Did you ever have chicken pox? 2) Did you ever suffer from shingles? 3) Did you have a flare-up of shingles prior to your being stricken with TM? These are a few of the theories with TM and I'm just curious to see if any of 'us' have experienced any or all of these. Jeanne in Dayton
Re: [TMIC] Questions
Jeanne,
1.) Yes, a mild case when I was in elementary school.
2.) Yes,within the year after ITM moved in with us.
3.) No, and what's more-!!
janh
jrushton [EMAIL PROTECTED] wrote:
v\:* { BEHAVIOR: url (#default#vml) } v\:* { BEHAVIOR: url
(#default#vml) }FLAVOR00-NONE--- 0.00 ;
Thank you, Todd, so much for doing this for me. It's really been
interesting to see what so many have sent me.
Jeanne in Dayton, TM on 5/21/2005, T4
---Original Message---
From: Todd Tarno
Date: 6/18/2008 4:44:42 PM
To: jrushton
Subject: Re: [TMIC] Questions
Jeanne, thank you for doing this survey.
1. Yes, when I was a kid, about 6.
2. Yes, about the same time I had Hepatitis B HIV+ Sept. 7, 1989.
3. NO, very lucky to say that I have never got the shingles again.
Todd in CC, TX TM on April 1, 2002 @ T-4 to T-8
jrushton [EMAIL PROTECTED] wrote:
v\:* { BEHAVIOR: url (#default#vml) } v\:* { BEHAVIOR: url
(#default#vml) } Hi, everyone (again!)
I have three questions for those who would be willing to respond:
1) Did you ever have chicken pox?
2) Did you ever suffer from shingles?
3) Did you have a flare-up of shingles prior to your being stricken with TM?
These are a few of the theories with TM and I'm just curious to see if any of
'us' have experienced any or all of these.
Jeanne in Dayton
Re: [TMIC] Questions
1) Did you ever have chicken pox? 2) Did you ever suffer from shingles? 3) Did you have a flare-up of shingles prior to your being stricken with TM? 1- yes at age 6 2- no 3- no Ella in Elyria **Gas prices getting you down? Search AOL Autos for fuel-efficient used cars. (http://autos.aol.com/used?ncid=aolaut000507)
RE: [TMIC] Questions
1.Yes, when I was a kid 2. No 3. No
Re: [TMIC] Questions
1) Did you ever have chicken pox? Yes as a child 2) Did you ever suffer from shingles? No 3) Did you have a flare-up of shingles prior to TM No
Re: [TMIC] Questions
Yes I had chicken pox as a childNo shingles No flare ups Trudy On Wed, Jun 18, 2008 at 8:31 PM, bradebi [EMAIL PROTECTED] wrote: 1) Did you ever have chicken pox? Yes as a child 2) Did you ever suffer from shingles? No 3) Did you have a flare-up of shingles prior to TM No
Re: [TMIC] Questions
Jeanne, sorry I think I completely missed this - 1. Yes, age 8 2. NO, thank goodness 3. NO Linda - Original Message - From: jrushtonmailto:[EMAIL PROTECTED] To: Todd Tarnomailto:[EMAIL PROTECTED] ; tmicmailto:tmic-list@eskimo.com Sent: Wednesday, June 18, 2008 2:11 PM Subject: Re: [TMIC] Questions Thank you, Todd, so much for doing this for me. It's really been interesting to see what so many have sent me. Jeanne in Dayton, TM on 5/21/2005, T4 ---Original Message--- From: Todd Tarnomailto:[EMAIL PROTECTED] Date: 6/18/2008 4:44:42 PM To: jrushtonmailto:[EMAIL PROTECTED] Subject: Re: [TMIC] Questions Jeanne, thank you for doing this survey. 1. Yes, when I was a kid, about 6. 2. Yes, about the same time I had Hepatitis B HIV+ Sept. 7, 1989. 3. NO, very lucky to say that I have never got the shingles again. Todd in CC, TX TM on April 1, 2002 @ T-4 to T-8 jrushton [EMAIL PROTECTED] wrote: Hi, everyone (again!) I have three questions for those who would be willing to respond: 1) Did you ever have chicken pox? 2) Did you ever suffer from shingles? 3) Did you have a flare-up of shingles prior to your being stricken with TM? These are a few of the theories with TM and I'm just curious to see if any of 'us' have experienced any or all of these. Jeanne in Dayton
RE: [TMIC] Questions
The answers below are for my daughter Ashlee. Tracey L. Black Certified Insurance Service Representative Hockley O'Donnell Insurance Agency Phone - 717-334-6741, x 29 Fax - 717-334-3414 Thank you for providing information to us. Please beware that no coverage is bound and no change to your insurance program is confirmed until verified by a licensed agent during regular business hours. If you do not hear from us within 1 business day, please re-contact us in case your information has not been retained. From: jrushton [mailto:[EMAIL PROTECTED] Sent: Saturday, April 19, 2008 1:31 PM To: tmic Subject: [TMIC] Questions Hi, everyone (again!) I have three questions for those who would be willing to respond: 1) Did you ever have chicken pox? Yes she did but she had a VERY light case of them. She only had about 10 spots on her entire body and I believe she was under a year when she got them. 2) Did you ever suffer from shingles? no 3) Did you have a flare-up of shingles prior to your being stricken with TM? no These are a few of the theories with TM and I'm just curious to see if any of 'us' have experienced any or all of these. Jeanne in Dayton
Re: [TMIC] Questions
Hi everyone chicken pox -yes(as a child) Shingles - no Rita jrushton [EMAIL PROTECTED] wrote: Hi, everyone (again!) I have three questions for those who would be willing to respond: 1) Did you ever have chicken pox? 2) Did you ever suffer from shingles? 3) Did you have a flare-up of shingles prior to your being stricken with TM? These are a few of the theories with TM and I'm just curious to see if any of 'us' have experienced any or all of these. Jeanne in Dayton
RE: [TMIC] Questions
Chicken pox yes Shingles no -Original Message- From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Monday, April 21, 2008 3:37 PM To: jrushton Cc: tmic Subject: Re: [TMIC] Questions Hi everyone chicken pox -yes(as a child) Shingles - no Rita jrushton [EMAIL PROTECTED] wrote: Hi, everyone (again!) I have three questions for those who would be willing to respond: 1) Did you ever have chicken pox? 2) Did you ever suffer from shingles? 3) Did you have a flare-up of shingles prior to your being stricken with TM? These are a few of the theories with TM and I'm just curious to see if any of 'us' have experienced any or all of these. Jeanne in Dayton
RE: [TMIC] Questions
From: jrushton [mailto:[EMAIL PROTECTED] Sent: April 19, 2008 10:31 AM To: tmic Subject: [TMIC] Questions Hi, everyone (again!) I have three questions for those who would be willing to respond: 1) Did you ever have chicken pox?yes 2) Did you ever suffer from shingles?no 3) Did you have a flare-up of shingles prior to your being stricken with TM? No, but I broke my wrist 6 weeks before that, from a bad fall. These are a few of the theories with TM and I'm just curious to see if any of 'us' have experienced any or all of these. Jeanne in Dayton
Re: [TMIC] Questions
1) Light case as a child.
2) Yes, soon after i had tm..within 6 months. Didn't suffer because I
was still numb.
3) No
janh
jrushton [EMAIL PROTECTED] wrote:
v\:* { BEHAVIOR: url (#default#vml) } v\:* { BEHAVIOR: url
(#default#vml) }FLAVOR00-NONE--- 0.00 ;
Hi, everyone (again!)
I have three questions for those who would be willing to respond:
1) Did you ever have chicken pox?
2) Did you ever suffer from shingles?
3) Did you have a flare-up of shingles prior to your being stricken with TM?
These are a few of the theories with TM and I'm just curious to see if any of
'us' have experienced any or all of these.
Jeanne in Dayton
Re: [TMIC] Questions
Hi Jeanne, I have placed my answers below in red. Carol in Culver, IN - Original Message - From: jrushton To: tmic Sent: Saturday, April 19, 2008 1:31 PM Subject: [TMIC] Questions Hi, everyone (again!) I have three questions for those who would be willing to respond: 1) Did you ever have chicken pox? YES 2) Did you ever suffer from shingles? NO 3) Did you have a flare-up of shingles prior to your being stricken with TM? N/A These are a few of the theories with TM and I'm just curious to see if any of 'us' have experienced any or all of these. Jeanne in Dayton
Re: [TMIC] Questions
1) as a child
2) yes the time of my TM
Jan Hargrove [EMAIL PROTECTED] wrote:
1) Light case as a child.
2) Yes, soon after i had tm..within 6 months. Didn't suffer because I
was still numb.
3) No
janh
jrushton [EMAIL PROTECTED] wrote:
v\:* { BEHAVIOR: url (#default#vml) } v\:* { BEHAVIOR: url
(#default#vml) }FLAVOR00-NONE--- 0.00 ;
Hi, everyone (again!)
I have three questions for those who would be willing to respond:
1) Did you ever have chicken pox?
2) Did you ever suffer from shingles?
3) Did you have a flare-up of shingles prior to your being stricken with TM?
These are a few of the theories with TM and I'm just curious to see if any of
'us' have experienced any or all of these.
Jeanne in Dayton
-
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Re: [TMIC] Questions
1. Yes 2. No 3. N/A Diane in Canada - Original Message - From: jrushton To: tmic Sent: Saturday, April 19, 2008 1:31 PM Subject: [TMIC] Questions Hi, everyone (again!) I have three questions for those who would be willing to respond: 1) Did you ever have chicken pox? 2) Did you ever suffer from shingles? 3) Did you have a flare-up of shingles prior to your being stricken with TM? These are a few of the theories with TM and I'm just curious to see if any of 'us' have experienced any or all of these. Jeanne in Dayton
Re: [TMIC] Questions
Yes No No Patti jrushton [EMAIL PROTECTED] wrote: Hi, everyone (again!) I have three questions for those who would be willing to respond: 1) Did you ever have chicken pox? 2) Did you ever suffer from shingles? 3) Did you have a flare-up of shingles prior to your being stricken with TM? These are a few of the theories with TM and I'm just curious to see if any of 'us' have experienced any or all of these. Jeanne in Dayton
Re: [TMIC] Questions
1. Yes, as a child. 2. No 3. No Barbara H. _http://barbarah.wordpress.com/_ (http://barbarah.wordpress.com/) In a message dated 4/19/2008 3:31:52 PM Eastern Daylight Time, [EMAIL PROTECTED] writes: Hi, everyone (again!) I have three questions for those who would be willing to respond: 1) Did you ever have chicken pox? 2) Did you ever suffer from shingles? 3) Did you have a flare-up of shingles prior to your being stricken with TM? These are a few of the theories with TM and I'm just curious to see if any of 'us' have experienced any or all of these. Jeanne in Dayton **Need a new ride? Check out the largest site for U.S. used car listings at AOL Autos. (http://autos.aol.com/used?NCID=aolcmp0030002851)
Re: [TMIC] Questions
1) Did you ever have chicken pox? YES 2) Did you ever suffer from shingles? NO 3) Did you have a flare-up of shingles prior to your being stricken with TM? NO Akua -- http://www.akuadesigns.etsy.com http://www.artfarm.com http://www.absolutearts.com/portfolios/a/akualezli/
RE: [TMIC] Questions
Date: Sat, 19 Apr 2008 12:31:00 -0500 From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Subject: [TMIC] Questions Hi, everyone (again!) I have three questions for those who would be willing to respond: 1) Did you ever have chicken pox? Yes 2) Did you ever suffer from shingles? No 3) Did you have a flare-up of shingles prior to your being stricken with TM? No These are a few of the theories with TM and I'm just curious to see if any of 'us' have experienced any or all of these. Jeanne in Dayton _ More immediate than e-mail? Get instant access with Windows Live Messenger. http://www.windowslive.com/messenger/overview.html?ocid=TXT_TAGLM_WL_Refresh_instantaccess_042008
Re: [TMIC] Questions
1. yes. 40 years ago, got TM 1 year ago 2. no 3. no But my Husband had chicken Pox and shingles and a second flare-up of shingles around my one year TM anniversary, but I suppose none of that counts! Mindy the Artist On Apr 19, 2008, at 1:31 PM, jrushton wrote: Hi, everyone (again!) I have three questions for those who would be willing to respond: 1) Did you ever have chicken pox? 2) Did you ever suffer from shingles? 3) Did you have a flare-up of shingles prior to your being stricken with TM? These are a few of the theories with TM and I'm just curious to see if any of 'us' have experienced any or all of these. Jeanne in Dayton
Re: [TMIC] Questions
i had the attack 5 days before i lost feeling in my legs...i actually looked
into this a while back and transversemyelitis is a rare complication of the
shingles
jrushton [EMAIL PROTECTED] wrote: v\:* { BEHAVIOR: url (#default#vml)
} v\:* { BEHAVIOR: url (#default#vml) }
FLAVOR00-NONE--- 0.00 ; Thanks, Sal! j
---Original Message---
From: sal r
Date: 4/19/2008 3:47:47 PM
To: Jan Hargrove; jrushton; tmic-list
Subject: Re: [TMIC] Questions
1) as a child
2) yes the time of my TM
Jan Hargrove [EMAIL PROTECTED] wrote:
1) Light case as a child.
2) Yes, soon after i had tm..within 6 months. Didn't suffer because I
was still numb.
3) No
janh
jrushton [EMAIL PROTECTED] wrote:
v\:* { BEHAVIOR: url (#default#vml) } v\:* { BEHAVIOR: url
(#default#vml) } Hi, everyone (again!)
I have three questions for those who would be willing to respond:
1) Did you ever have chicken pox?
2) Did you ever suffer from shingles?
3) Did you have a flare-up of shingles prior to your being stricken with TM?
These are a few of the theories with TM and I'm just curious to see if any of
'us' have experienced any or all of these.
Jeanne in Dayton
-
Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it
now.
-
Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.
Re: [TMIC] Questions
I had the chicken pox when I was five. We had patients coming into our clinic in horrible pain with the shingles. A few weeks before TM, I had what I thought was shingles on my back up near my shoulder. It was along the nerve path and was a constant pain, burning, and itch. When I was in ICU at Harborview in Seattle, that was one of the things the neuro asked about. He admitted he just didn't know anything about TM but was doing a quick study on it while I was there. Thank you for the additional comments, Sal! j ---Original Message--- From: sal r Date: 4/19/2008 5:18:18 PM To: jrushton; tm Subject: Re: [TMIC] Questions i had the attack 5 days before i lost feeling in my legs...i actually looked into this a while back and transversemyelitis is a rare complication of the shingles jrushton [EMAIL PROTECTED] wrote: Thanks, Sal! j ---Original Message--- From: sal r Date: 4/19/2008 3:47:47 PM To: Jan Hargrove; jrushton; tmic-list Subject: Re: [TMIC] Questions 1) as a child 2) yes the time of my TM Jan Hargrove [EMAIL PROTECTED] wrote: 1) Light case as a child. 2) Yes, soon after i had tm..within 6 months. Didn't suffer because I was still numb. 3) No janh jrushton [EMAIL PROTECTED] wrote: Hi, everyone (again!) I have three questions for those who would be willing to respond: 1) Did you ever have chicken pox? 2) Did you ever suffer from shingles? 3) Did you have a flare-up of shingles prior to your being stricken with TM? These are a few of the theories with TM and I'm just curious to see if any of 'us' have experienced any or all of these. Jeanne in Dayton Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.
Re: [TMIC] Questions
Jeanne, Yes, I had the chickenpox as a child, but has never had shingles. Naomi C4-incomplete, quadriplegic since July 2005 due to Transverse Myelitis **Need a new ride? Check out the largest site for U.S. used car listings at AOL Autos. (http://autos.aol.com/used?NCID=aolcmp0030002851)
Re: [TMIC] Questions
Hi it's Jude, Michigan... No, never, not once, for the questionaire. I owe you for the lovely note from Dayton...thank you, it was sweet. Sick as the proverbial (bark, bark, howl, whimper...) dog, Jude, Flushing, Michigan...perfect name, eh? One additional, huge violin shaped pressure sore for the record, and the everblooming UTI, for the road. Lots and lots of anti-biotics, prescribed for weeks and weeks and weeks (haven't been home since the middle of December) as they turned into months... I ask myself daily now, what is going to happen in the days to come? Not much worth wallowing about this late in the game. The doc's say that I have lost a significant amount of weight and are forcing me to drink vanilla shakes that come packaged like small cartons of milk,like we used to drink in grade-school. Here's to you, you, and all of you... Jude - Original Message From: sal r [EMAIL PROTECTED] To: Jan Hargrove [EMAIL PROTECTED]; jrushton [EMAIL PROTECTED]; tmic-list tmic-list@eskimo.com Sent: Saturday, April 19, 2008 4:48:48 PM Subject: Re: [TMIC] Questions Oh yeah you can not get shingles if youve never had the chickenpox... Jan Hargrove [EMAIL PROTECTED] wrote: 1) Light case as a child. 2) Yes, soon after i had tm..within 6 months. Didn't suffer because I was still numb. 3) No janh jrushton [EMAIL PROTECTED] wrote: Hi, everyone (again!) I have three questions for those who would be willing to respond: 1) Did you ever have chicken pox? 2) Did you ever suffer from shingles? 3) Did you have a flare-up of shingles prior to your being stricken with TM? These are a few of the theories with TM and I'm just curious to see if any of 'us' have experienced any or all of these. Jeanne in Dayton Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.
Re: [TMIC] Questions
1. yes, big time, age 9 2. no 3. no Linda (Eagle, ID) who is so very thankful to be able to say NO to shingles! - Original Message - From: Lawrence Kingmailto:[EMAIL PROTECTED] To: tmic-list@eskimo.commailto:tmic-list@eskimo.com Cc: Lawrence Kingmailto:[EMAIL PROTECTED] Sent: Saturday, April 19, 2008 4:21 PM Subject: Re: [TMIC] Questions 1. yes. 40 years ago, got TM 1 year ago 2. no 3. no But my Husband had chicken Pox and shingles and a second flare-up of shingles around my one year TM anniversary, but I suppose none of that counts! Mindy the Artist On Apr 19, 2008, at 1:31 PM, jrushton wrote: Hi, everyone (again!) I have three questions for those who would be willing to respond: 1) Did you ever have chicken pox? 2) Did you ever suffer from shingles? 3) Did you have a flare-up of shingles prior to your being stricken with TM? These are a few of the theories with TM and I'm just curious to see if any of 'us' have experienced any or all of these. Jeanne in Dayton
RE: [TMIC] questions re: tm
does not want to make the call send your records to the John Hopkins Center and arrange to go their for a consultation. We dont have a choice but the Physician to Physician Hotline because my brother is not mobile I live in Cleveland and he would have to be transported their via Ambulance wed have to live in a hotel but would still need Ambulatory Services to get him to from the hotel. I hope this information helps in some small way my brother IS getting sensations and feelings back in areas he did not have feeling in a month ago after just a few weeks of intensive Physical Occupational Therapy. Renee - From: Todd Tarno [mailto:[EMAIL PROTECTED] Sent: Monday, February 05, 2007 2:14 PM To: [EMAIL PROTECTED]; tmic-list@eskimo.com Subject: Re: [TMIC] questions re: tm Hi Marti, You are on very low dose of meds. I was up to 3,600 mg of Neurontin for a year and then slowly went down to 1,800 mg ( 600 mg 3 times a day). I'm now on Lyrica 75 mg twice a day. I slowly got worst the first two years. I was unable to exercise, because of fatigue. But once I was able to do little exercise, I started to see improvements. Some doctors say the only improvements you will every get is in the first two years and that is all. But I'm getting stronger each day, it may be small, but it is improvements. You will need to use the meds that are good for you and do the exercises that are good for you. Do either too much and you may pay for it the next day in bed. That is OK, too. Our prays are with you your family, Todd in Corpus Christi, TX by way of Jim Lubin [EMAIL PROTECTED] [EMAIL PROTECTED] wrote: I AM FAIRLY NEW TO THIS EMAIL CHAT. I AM A 36 YEAR OLD WIFE AND MOTHER WHO WAS DIAGNOSED WITH INCOMPLETE TRANSVERSE MYELITIS. IT SEEMS TO HAVE BEEN A FAIRLY MILD CASE COMPARED TO A LOT OF THE STORIES I HAVE READ SO I WAS REALLY HESITANT TO WRITE. BUT I HAVE SO MANY QUESTIONS THAT I CAN'T SEEM TO GET ANSWERED. IT HAS BEEN A ROLLER COASTER AND I'M AT A FRUSTRATING POINT AGAIN. I FEEL STUCK AND I NEED SOME INPUT. I WILL TRY TO BE BRIEF WITH MY HISTORY AND THEN ASK THE QUESTIONS. IN MARCH TM HIT ME WHILE WATCHING TV I FIRST THOUGHT MY LEG WAS ASLEEP AS A RUNNER IT WAS NOT UNUSUAL TO HAVE SOME WEIRD ACHES AND PAINS IN MY LEGS FROM TIME TO TIME. I STOOD UP BUT IT WOULD NOT GO AWAY SHORTLY AFTER I TOUCHED MY SIDE WITH MY HANDS AND IT WAS VERY PAINFUL. OVER THE NEXT TWO WEEKS IT CAME ON MORE AND MORE WITH WEAKNESS STUMBLING (ON BOTH SIDES) FREQUENT AND URGENT URINATION WITH A FEW ACCIDENTS AND BOWEL LEAKAGE. AFTER TRYING SMALL DOSES OF STEROIDS THINKING MAYBE IT WAS SHINGLES(I WORK IN A FAMILY PRACTICE OFFICE). I WAS FINALLY REFERRED TO A BACK DOCTOR WHO MY HUSBAND KNEW. HE WAS CONCERNED WITH THE NUMBNESS IN MY LOW BACK ( I COULDN'T FEEL PIN PRICKS ON MY LEFT SIDE) HE DID SEVERAL MRI'S AND IN TWO DAYS I WAS SEEING A NEUROLOGIST. HE DIAGNOSED ME WITH TM AND STARTED ME ON HIGH DOSES OF SOLUMEDROL AND URISPAS FOR MY BLADDER THEY HAD REPORTED SPOTS ON MY BRAIN AND INFLAMMATION IN MY CERVICAL SPINAL CORD. BY AUGUST I WAS FEELING MUCH BETTER MY URINARY AND BOWEL FUNCTION WERE MUCH IMPROVED AND MY MRI'S WERE CLEARED I THOUGHT I WAS HOME FREE THEN IN OCTOBER THE NUMBNESS SENSITIVITY TO COLD EXTREME FATIGUE AND PAIN AND BURNING SENSATION RETURNED:( I JUST CAN'T SEEM TO BEAT IT AROUND NOVEMBER THEY DID MORE MRI AND SAID THE INFLAMMATION WAS STILL GONE BUT HE SAW THE SPOTS ON MY BRAIN AGAIN BUT WAS N'T CONCERNED WITH THEM SINCE I DIDN'T HAVE THE SPINAL CORD INFLAMMATION AGAIN. HE(MY NEUROLOGIST) PUT ME ON NEURONTIN 200MG QHS AND CYMBALTA 30MG AM. I FORGOT TO MENTION I HAVE A REALLY HARD TIME WITH MEDS IN GENERAL I REACT VERY STRONGLY TO JUST ABOUT ANYTHING WHEN I WENT UP TO NEURONTIN 300 AT NIGHT I WAS OUT OF IT THE WHOLE NEXT DAY AND THAT IS IMPOSSIBLE WITH FOUR LITTLE ONES. IN THE LAST WEEKS IT HAS JUST GOTTEN WORSE I TAKE DARVOCET WHEN I CAN'T STAND THE PAIN ANY MORE BUT THAT JUST SENDS ME TO BED. MY QUESTIONS ARE IS THIS THE BEST THAT TM CAN BE CONTROLLED IS THIS SOMETHING I WILL JUST HAVE TO LEARN TO DEAL WITH. I'M HAVING A REALLY HARD TIME ACCEPTING THIS AS THE QUALITY OF MY LIFE BUT I DON'T KNOW WHAT ELSE TO DO. I AM WONDERING ABOUT JOHN HOPKINS TM CENTER OR IF ANYONE KNOWS ANY AT CLEVELAND CLINIC OR CLOSE TO DETROIT MICHIGAN THAT SPECIALIZES IN THIS. I HAVE A GREAT NEUROLOGIST BUT I THINK I NEED SOMEONE THAT SPECIALIZED IN TM. I HAVE A SUPPORTIVE HUSBAND AND EXTENDED FAMILY BUT EVEN THEY JUST DON'T UNDERSTAND. I HAVE A FRIEND THAT KEEPS INSINUATING THAT I NEED TO JUST GET OFF OF THE MEDICINE SHE THINKS THE MEDICINE IS THE PROBLEM. BUT I CAN'T IMAGINE THE PAIN WITHOUT THE LITTLE BIT OF MEDS I AM ON. I KEEP SAYING I'M NOT DEPRESSED BUT IF THIS CONTINUE'S WITHOUT ANSWERS I SUPPOSE I WILL BE. I AM DEFINITELY DISCOURAGED. SORRY FOR THE LONG EMAIL
RE: [TMIC] questions re: tm
Marti, I'm sorry for all that you have been thru. TM hits us all differently but we all understand the incredible pain!! I think you would feel much better about the diagnosis if you went and got another opinion. Johns Hopkins is a great place to go.. and many of us went there for our second opinions. Dr. Kerr is the best if you can get an appointment with him. With four kids it's got to be incredibly hard. stress is of course not good for TM. The fact that your husband and family members really cannot understand what you're going thru makes it even worse.. Cause you look just fine! Some of us are in wheelchairs or use walkers (me) or canes. Some are fortunate enough to be completely back on their feet. We are here for you!! Ask any questions you want. even if it's just to vent as many of us have done. Try to take it one day at a time, exercise if you can, do yoga or something that will help with the stress. Tho I raised four children and unless you lock yourself in the bathroom.. there is no time for you.. I was 55 when TM hit and my kids came home and took care of me till I could get back on my feet. Take care... keep in touch with us. Trudy _ From: by way of Jim Lubin [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Thursday, January 25, 2007 1:42 PM To: tmic-list@eskimo.com Subject: [TMIC] questions re: tm I AM FAIRLY NEW TO THIS EMAIL CHAT. I AM A 36 YEAR OLD WIFE AND MOTHER WHO WAS DIAGNOSED WITH INCOMPLETE TRANSVERSE MYELITIS. IT SEEMS TO HAVE BEEN A FAIRLY MILD CASE COMPARED TO A LOT OF THE STORIES I HAVE READ SO I WAS REALLY HESITANT TO WRITE. BUT I HAVE SO MANY QUESTIONS THAT I CAN'T SEEM TO GET ANSWERED. IT HAS BEEN A ROLLER COASTER AND I'M AT A FRUSTRATING POINT AGAIN. I FEEL STUCK AND I NEED SOME INPUT. I WILL TRY TO BE BRIEF WITH MY HISTORY AND THEN ASK THE QUESTIONS. IN MARCH TM HIT ME WHILE WATCHING TV I FIRST THOUGHT MY LEG WAS ASLEEP AS A RUNNER IT WAS NOT UNUSUAL TO HAVE SOME WEIRD ACHES AND PAINS IN MY LEGS FROM TIME TO TIME. I STOOD UP BUT IT WOULD NOT GO AWAY SHORTLY AFTER I TOUCHED MY SIDE WITH MY HANDS AND IT WAS VERY PAINFUL. OVER THE NEXT TWO WEEKS IT CAME ON MORE AND MORE WITH WEAKNESS STUMBLING (ON BOTH SIDES) FREQUENT AND URGENT URINATION WITH A FEW ACCIDENTS AND BOWEL LEAKAGE. AFTER TRYING SMALL DOSES OF STEROIDS THINKING MAYBE IT WAS SHINGLES(I WORK IN A FAMILY PRACTICE OFFICE). I WAS FINALLY REFERRED TO A BACK DOCTOR WHO MY HUSBAND KNEW. HE WAS CONCERNED WITH THE NUMBNESS IN MY LOW BACK ( I COULDN'T FEEL PIN PRICKS ON MY LEFT SIDE) HE DID SEVERAL MRI'S AND IN TWO DAYS I WAS SEEING A NEUROLOGIST. HE DIAGNOSED ME WITH TM AND STARTED ME ON HIGH DOSES OF SOLUMEDROL AND URISPAS FOR MY BLADDER THEY HAD REPORTED SPOTS ON MY BRAIN AND INFLAMMATION IN MY CERVICAL SPINAL CORD. BY AUGUST I WAS FEELING MUCH BETTER MY URINARY AND BOWEL FUNCTION WERE MUCH IMPROVED AND MY MRI'S WERE CLEARED I THOUGHT I WAS HOME FREE THEN IN OCTOBER THE NUMBNESS SENSITIVITY TO COLD EXTREME FATIGUE AND PAIN AND BURNING SENSATION RETURNED:( I JUST CAN'T SEEM TO BEAT IT AROUND NOVEMBER THEY DID MORE MRI AND SAID THE INFLAMMATION WAS STILL GONE BUT HE SAW THE SPOTS ON MY BRAIN AGAIN BUT WAS N'T CONCERNED WITH THEM SINCE I DIDN'T HAVE THE SPINAL CORD INFLAMMATION AGAIN. HE(MY NEUROLOGIST) PUT ME ON NEURONTIN 200MG QHS AND CYMBALTA 30MG AM. I FORGOT TO MENTION I HAVE A REALLY HARD TIME WITH MEDS IN GENERAL I REACT VERY STRONGLY TO JUST ABOUT ANYTHING WHEN I WENT UP TO NEURONTIN 300 AT NIGHT I WAS OUT OF IT THE WHOLE NEXT DAY AND THAT IS IMPOSSIBLE WITH FOUR LITTLE ONES. IN THE LAST WEEKS IT HAS JUST GOTTEN WORSE I TAKE DARVOCET WHEN I CAN'T STAND THE PAIN ANY MORE BUT THAT JUST SENDS ME TO BED. MY QUESTIONS ARE IS THIS THE BEST THAT TM CAN BE CONTROLLED IS THIS SOMETHING I WILL JUST HAVE TO LEARN TO DEAL WITH. I'M HAVING A REALLY HARD TIME ACCEPTING THIS AS THE QUALITY OF MY LIFE BUT I DON'T KNOW WHAT ELSE TO DO. I AM WONDERING ABOUT JOHN HOPKINS TM CENTER OR IF ANYONE KNOWS ANY AT CLEVELAND CLINIC OR CLOSE TO DETROIT MICHIGAN THAT SPECIALIZES IN THIS. I HAVE A GREAT NEUROLOGIST BUT I THINK I NEED SOMEONE THAT SPECIALIZED IN TM. I HAVE A SUPPORTIVE HUSBAND AND EXTENDED FAMILY BUT EVEN THEY JUST DON'T UNDERSTAND. I HAVE A FRIEND THAT KEEPS INSINUATING THAT I NEED TO JUST GET OFF OF THE MEDICINE SHE THINKS THE MEDICINE IS THE PROBLEM. BUT I CAN'T IMAGINE THE PAIN WITHOUT THE LITTLE BIT OF MEDS I AM ON. I KEEP SAYING I'M NOT DEPRESSED BUT IF THIS CONTINUE'S WITHOUT ANSWERS I SUPPOSE I WILL BE. I AM DEFINITELY DISCOURAGED. SORRY FOR THE LONG EMAIL IF ANY ONE HAS SUGGESTIONS OR ENCOURAGEMENT I WELCOME IT THANKS MARTI -- Original message -- From: Jim Lubin [EMAIL PROTECTED] Hi Marti, To send to the entire group, send the message to tmic-list@eskimo.com Jim At 05:44 PM 1/19/2007, [EMAIL PROTECTED] wrote: JIM I WAS DIAGNOSED WITH TM MARCH 07. I AM NEW TO THIS EMAIL CHAT. I'M NOT SURE HOW IT WORKS. I
Re: [TMIC] questions re: tm
Howdy from Bobberino in Elvisland. Your story sounds so similar to many of ours out here in cyberspace. And your questions are typical, but don't stop, keep them coming. Many of us as well have encountered skeptical relatives, friends and other do-gooders who really don't know a thing about TM... so I suggest you ignore them all, hit the web, and do your own research. Reading up on TM will help you lots, believe me. And yes, Johns Hopkins is a good place to go to. As for your condition, each patient is unique and not two of us have the same exact symptoms, responses to treatment or reactions to meds and such. You're gonna be pretty much on your own, you may see some improvement but it's hard to say when. Most of us hafta wait wait and wait some more. But hang in there, keep the faith and do as much as you can for yourself. And ask any questions you want, however weird or intimate or inordinary. cheers, Bobberino a caregiver to me missus for almost ten years now
Re: [TMIC] Questions about weaning off Neurontin
Hi Patti:I am eligble for Medicare D but I havemedical insurance through my former employer. This insurance follows Medicare D guidlines so they cover the first $2600 in total meds costs and then I am responsible for the next $3600. That's a huge chunk of money and I won't be able to afford my monthly meds. Ialso use the generic gabapentinand it's costing me $154 a month. Generic is much cheaper than the brand but it's still too much for me when I add that $154 to the cost of all of my other meds. I was actually better off without Medicare D because I used to get my neurontin and other meds from the manufacturers for free on their patient assistance programs. Ah progress! lolSharon[EMAIL PROTECTED] wrote: SharonI recently signed up for Medicare D I use the generic gabapentin in place of Neurontin. It is much cheaper. I signed up under AARP. Patti Sharon Marsden <[EMAIL PROTECTED]>wrote: Does anyone have advice on weaning off Neurontin? I've decided I must do so because of the high cost. I'm on the Medicare drug plan and the Neurontin is so expensive that I'll soon reach the first level. (then I would have to shoulder the cost of the next $3600can't afford that). I'm on Baclofen since January and it's helping me. And, no, I have not discussed this with my doctor. :) I normally take 3200 mg. a day. I started reducing my dosage slightly last week--down 400 mg. a day. Yesterday I reduced it even more. But I am having some additional mild cramping and mild pain in the cramping areas. It's not bad but is noticeable. I am also extra numb from head to toe. Now the numbness could be from the heat since it's been hitting 112 plus for several days now. Any thoughts? Thanks! Sharon TM 1997 to MS 1998 Sharon --from Arizona TM 1997 to MS 1998 It's not easy taking my problems one at a time when they refuse to get in line. ~Ashleigh Brilliant http://health.groups.yahoo.com/group/MSersLife/ - Do you Yahoo!? Everyone is raving about the all-new Yahoo! Mail Beta.Sharon --from Arizona TM 1997 to MS 1998 It's not easy taking my problems one at a time when they refuse to get in line. ~Ashleigh Brilliant http://health.groups.yahoo.com/group/MSersLife/ __Do You Yahoo!?Tired of spam? Yahoo! Mail has the best spam protection around http://mail.yahoo.com
Re: [TMIC] Questions about weaning off Neurontin
Sharon I recently signed up for Medicare D I use the generic gabapentin in place of Neurontin. It is much cheaper. I signed up under AARP. Patti Sharon Marsden [EMAIL PROTECTED] wrote: Does anyone have advice on weaning off Neurontin? I've decided I must do so because of the high cost. I'm on the Medicare drug plan and the Neurontin is so expensive that I'll soon reach the first level. (then I would have to shoulder the cost of the next $3600can't afford that). I'm on Baclofen since January and it's helping me. And, no, I have not discussed this with my doctor. :) I normally take 3200 mg. a day. I started reducing my dosage slightly last week--down 400 mg. a day. Yesterday I reduced it even more. But I am having some additional mild cramping and mild pain in the cramping areas. It's not bad but is noticeable. I am also extra numb from head to toe. Now the numbness could be from the heat since it's been hitting 112 plus for several days now. Any thoughts? Thanks! Sharon TM 1997 to MS 1998 Sharon --from Arizona TM 1997 to MS 1998 It's not easy taking my problems one at a time when they refuse to get in line. ~Ashleigh Brilliant http://health.groups.yahoo.com/group/MSersLife/ - Do you Yahoo!? Everyone is raving about the all-new Yahoo! Mail Beta.
Re: [TMIC] Questions about weaning off Neurontin
Title: AOL Email Wow, after reading all of the responses regarding weaning off of Neurontin to get on Lyrica, I know what was wrong with me. The muscle pain was so intense and the headaches have gone on now for two weeks. As soon as I got back on Neurontin the muscle pain went away, but I am still having daily headaches that are lasting 24/7. I too am staying away from Lyrica, although am happy for those for whom it helps. Peace, Jude
Re: [TMIC] Questions about weaning off Neurontin
Title: AOL Email I use gabapentin as well since my insurance company wouldn't pay for neurontin after a few months. I had the terrific pain after going off of the gabapentin when trying to go onto Lyrica. Jude
Re: [TMIC] Questions about weaning off Neurontin
Man the headaches!! Now I see a pattern. I have been off of Neurontin for a month now and just take 75mg Lyrica Twice a day. I have also noticed that when I push myself I tend to get the shakes a little. I am not sure if these things are all related to the Lyrica, but I am going to run it past my Neuro and see what he says. Alan - Original Message - From: Stacy Harim To: tmic-list@eskimo.com ; Sharon Marsden Sent: Monday, June 05, 2006 4:38 PM Subject: Re: [TMIC] Questions about weaning off Neurontin I had a very hard time weaning off of the nuerontin. Do it very slowly. I did it the way the doctor told me to and started lyrica slowly at the same time and had severe headaches. I would advise you to check and see how much the lyrica is. That could help you with the cramping and numbness that wasn't there because you were on the nuerontin and the lyrica could help. Was medicaid paying for your meds before the drug plan? If so, you might be on the wrong plan because I only paid a few bucks for Neurontin. I would go and investigate the drug plans and see which ones that have the lowest cost on your medications if you haven't done so. I hope it all works out for you, Stacy - Original Message - From: Sharon Marsden To: tmic-list@eskimo.com Sent: Monday, June 05, 2006 4:04 PM Subject: [TMIC] Questions about weaning off Neurontin Does anyone have advice on weaning off Neurontin? I've decided I must do so because of the high cost. I'm on the Medicare drug plan and the Neurontin is so expensive that I'll soon reach the first level. (then I would have to shoulder the cost of the next $3600can't afford that). I'm on Baclofen since January and it's helping me. And, no, I have not discussed this with my doctor. :) I normally take 3200 mg. a day. I started reducing my dosage slightly last week--down 400 mg. a day. Yesterday I reduced it even more. But I am having some additional mild cramping and mild pain in the cramping areas. It's not bad but is noticeable. I am also extra numb from head to toe. Now the numbness could be from the heat since it's been hitting 112 plusfor several days now. Any thoughts? Thanks! Sharon TM 1997 to MS 1998 Sharon --from Arizona TM 1997 to MS 1998 It's not easy taking my problems one at a time when they refuse to get in line. ~Ashleigh Brilliant http://health.groups.yahoo.com/group/MSersLife/ Do you Yahoo!?Everyone is raving about the all-new Yahoo! Mail Beta.
Re: [TMIC] Questions about weaning off Neurontin
I also use the generic brand and use my mail order section of my prescription plan which saves me a ton! Where the meds might cost me $35 for one month, the mail order gives me 3 mos for $30 on that one.Natalie Boyles [EMAIL PROTECTED] wrote: There is a generic form of neurotin, gabapentin,that I used and is cheaper than brand name. If your program only covers the brand name, perhaps if you ask they mightpermit you to use the generic. I have Humana PDP Enhanced S5884-005medicare prescription plan. The pricing is different for each state and area of state. But, for the generic gabapentin the price of 800mg 3xd for 12 months would cost me a total of $373.00. If I bought the same amount of neurontin for 12 months my total cost would be $1,752.60. I bet you could get the generic and afford that. If you look at meds on costco.com, the generic sounds like it would be cheaper than your plan. Natalie - Original Message - From:SharonMarsdenTo: tmic-list@eskimo.comSent: Monday, June 05, 2006 4:04 PM Subject: [TMIC] Questions about weaningoff Neurontin Does anyone have advice on weaning offNeurontin? I've decided I must do so because of the high cost. I'mon the Medicare drug plan and the Neurontin is so expensive that I'll soonreach the first level. (then I would have to shoulder the cost of thenext $3600can't afford that). I'm on Baclofen since January and it'shelping me. And, no, I have not discussed this with mydoctor. :) I normally take 3200 mg. a day. Istarted reducing my dosage slightly last week--down 400 mg. a day.Yesterday I reduced it even more. But I am having some additional mildcramping and mild pain in the cramping areas. It's not bad but isnoticeable. I am also extra numb from head to toe. Now thenumbness could be from the heat since it's been hitting 112 plusforseveral days now. Any thoughts? Thanks! SharonTM 1997 to MS 1998 Sharon --from ArizonaTM 1997 to MS 1998 It's not easy taking my problems one ata time when they refuse to get in line. ~Ashleigh Brilliant http://health.groups.yahoo.com/group/MSersLife/ Do you Yahoo!?Everyone is raving about the all-newYahoo! Mail Beta.Krissy ZoddaTri State Support Group Leaderhttp://www.geocities.com/tmladyk/home.html~I'm In pretty Good Shape For the Shape I am in~ __Do You Yahoo!?Tired of spam? Yahoo! Mail has the best spam protection around http://mail.yahoo.com
Re: [TMIC] Questions!
ok good to know...i dont seem to have any issues with it that I know of right now...any side effects, if I have any, are certainly keeping quiet for the past 9 mos ...just need it for my sensations..no painNatalie Boyles [EMAIL PROTECTED] wrote: Hi, Just know that when I had the pain and visual problems the neurologist said it most likely was the neurontin. She did not seem to be too impressed with neurontin; don't know why. Another neurologist had prescribed it for me. She wanted me to stop it and go on keffera (?), not sure what name is. I stopped the neurontin. I have not had any farther eye damage.Before her mentioning it, I had never heard neurontin could effect the eyes. Natalie- Original Message -From:Krissy ZTo: Natalie Boyles ; TM List Sent: Thursday, May 25, 2006 12:19PM Subject: Re: [TMIC] Questions! what sort of eye problems can neurontin cause?Krissy ZoddaTri State Support Group Leaderhttp://www.geocities.com/tmladyk/home.html~I'm In pretty Good Shape For the Shape I am in~ How low will we go? Check out Yahoo! Messengers low PC-to-Phone call rates.
Re: [TMIC] Questions!
what sort of eye problems can neurontin cause?Natalie Boyles [EMAIL PROTECTED] wrote:I had some eye problems when I was on neurontin and the opthamologist told me that neurontin can cause eye problems. I do not know about Lyrica, but perhaps it also effects the eyes. You should see an opthamologist just to be sure. I now have a permanently damaged eye. Not saying it was neurontin, butam saying the neurologists I were seeing did not catch this before if got bad. Each doctor has their specialty. Natalie On 5/24/06, Trudy [EMAIL PROTECTED] wrote: I have been on Lyrica for about a week now. I am slowly coming down off the Neurontin⦠Feeling pretty weird at times. My legs don't have as much pain but seem like they're sort of wooden⦠slow moving?? A few questions: Does anyone notice a "different" taste.. My lips seem salty? Just a funny taste. Also, since last Nov. (the day I drove my husband to Baltimore for his prostate cancer surgery) I have had blood vessels popping in my eyes. At least every 6 weeks. This time, it actually hurt⦠behind my eyes?? And of course I look like "devil woman". A blue eye surrounded by blood redâ¦. At school the kids go, Ugh⦠Mrs. O what happened, you look weird" I don't blame them⦠Two different neurologists told me that it was no big deal⦠it happens⦠Also, one more question. Does anyone every get "head" pains. Not a headache but a pain in your head.. doesn't last long.. but definitely feel it. Also at times it feels like weird things are going on in my head??? Thanks The weird one! Trudy in Northern Virginia where the weather has been "awesome"â¦. Worry does not empty tomorrow of its troubles; It empties today of its strengths. Krissy ZoddaTri State Support Group Leaderhttp://www.geocities.com/tmladyk/home.html~I'm In pretty Good Shape For the Shape I am in~ Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1/min.
