Re: [TMIC] visit to Dr
Janice I hate this for you with you,,hate it hate it hate it
--- On Sun, 10/17/10, Janice Nichols jan...@centurytel.net wrote:
From: Janice Nichols jan...@centurytel.net
Subject: Re: [TMIC] visit to Dr
To: L T CHERPESKI cherp...@msn.com, Jeron Rampersad
rumc...@hotmail.com, jcs...@yahoo.com, Transverse Myelytis
tmic-list@eskimo.com
Date: Sunday, October 17, 2010, 11:53 PM
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#yiv1925546833 .yiv1925546833hmmessage {
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I have a very painful tailbone having to do with myelitis. Also, the spasms
in legs are getting worse and I am really tired. Spent 5 days with my
daughter and her family - which I loved - but probably got too tired.Just
don't feel up to dealing with myelitis right now. Poor, poor Janice.
Sorry guys, I'll be better tomorrow. If not, I am sure you will hear about it.
Janice
From: L T CHERPESKI
Sent: Sunday, October 17, 2010 10:41 PM
To: Jeron Rampersad ; jcs...@yahoo.com ; Transverse Myelytis ; Janice Nichols
Subject: Re: [TMIC] visit to Dr
Janice I'm so sorry to hear this. What's going on?
hugs,
Linda C
- Original Message -
From: Janice Nichols
To: Jeron Rampersad ; jcs...@yahoo.com ; Transverse Myelytis
Sent: Sunday, October 17, 2010 3:12 PM
Subject: Re: [TMIC] visit to Dr
Well, I am having a bad, bad day today and am not smiling.
Janice
From: Jeron Rampersad
Sent: Wednesday, October 13, 2010 8:50 PM
To: jcs...@yahoo.com ; Transverse Myelytis
Subject: RE: [TMIC] visit to Dr
Same story here, but this it was at my dentist's office. The dental assistant
needed an update on my medical history and I asked, how long do you have? By
the time I was through she was in tears. I felt really bad for her after, but
it didn't end there. I had to list all the meds I'm on.spell the names of
each drug then say what I take them for. By the time my dentist saw me, she was
only too happy to say, well on a good note, you have really nice teeth! lol!
Thank God I can still smile about our little friend called the TM monster.
Jeron
Date: Wed, 13 Oct 2010 17:28:52 -0700
From: jcs...@yahoo.com
Subject: Re: [TMIC] visit to Dr
To: tmic-list@eskimo.com
well,,I kinda had to answer that one on the silly questioneer they always make
me fill out.
like doing a history everytime i go in there
--- On Wed, 10/13/10, kimharrison...@comcast.net kimharrison...@comcast.net
wrote:
From: kimharrison...@comcast.net kimharrison...@comcast.net
Subject: Re: [TMIC] visit to Dr
To: tmic-list@eskimo.com
Cc: transverse myelitis tmic-list@eskimo.com
Date: Wednesday, October 13, 2010, 6:58 PM
#yiv1925546833 .yiv1925546833ExternalClass #yiv1925546833ecxyiv879858227 p
{}
Oh My Gosh... sounds like my $50.00 bi yearly visit to the Nero...
only difference is mikne ask how the
poop and pee is going... LOL
wow
- Original Message -
From: john snodgrass jcs...@yahoo.com
To: transverse myelitis tmic-list@eskimo.com
Sent: Wednesday, October 13, 2010 6:21:37 PM
Subject: [TMIC] visit to Dr
seen neurologist today.
asked how i was
I said in pain.
he said im sorry
upped the baclofen dosage.
banged around with the nerve finder hammer.
the end.
Re: [TMIC] visit to Dr
Well, I am having a bad, bad day today and am not smiling. Janice From: Jeron Rampersad Sent: Wednesday, October 13, 2010 8:50 PM To: jcs...@yahoo.com ; Transverse Myelytis Subject: RE: [TMIC] visit to Dr Same story here, but this it was at my dentist's office. The dental assistant needed an update on my medical history and I asked, how long do you have? By the time I was through she was in tears. I felt really bad for her after, but it didn't end there. I had to list all the meds I'm on.spell the names of each drug then say what I take them for. By the time my dentist saw me, she was only too happy to say, well on a good note, you have really nice teeth! lol! Thank God I can still smile about our little friend called the TM monster. Jeron Date: Wed, 13 Oct 2010 17:28:52 -0700 From: jcs...@yahoo.com Subject: Re: [TMIC] visit to Dr To: tmic-list@eskimo.com well,,I kinda had to answer that one on the silly questioneer they always make me fill out. like doing a history everytime i go in there --- On Wed, 10/13/10, kimharrison...@comcast.net kimharrison...@comcast.net wrote: From: kimharrison...@comcast.net kimharrison...@comcast.net Subject: Re: [TMIC] visit to Dr To: tmic-list@eskimo.com Cc: transverse myelitis tmic-list@eskimo.com Date: Wednesday, October 13, 2010, 6:58 PM Oh My Gosh... sounds like my $50.00 bi yearly visit to the Nero... only difference is mikne ask how the poop and pee is going... LOL wow - Original Message - From: john snodgrass jcs...@yahoo.com To: transverse myelitis tmic-list@eskimo.com Sent: Wednesday, October 13, 2010 6:21:37 PM Subject: [TMIC] visit to Dr seen neurologist today. asked how i was I said in pain. he said im sorry upped the baclofen dosage. banged around with the nerve finder hammer. the end.
Re: [TMIC] visit to Dr
Janice I'm so sorry to hear this. What's going on? hugs, Linda C - Original Message - From: Janice Nicholsmailto:jan...@centurytel.net To: Jeron Rampersadmailto:rumc...@hotmail.com ; jcs...@yahoo.commailto:jcs...@yahoo.com ; Transverse Myelytismailto:tmic-list@eskimo.com Sent: Sunday, October 17, 2010 3:12 PM Subject: Re: [TMIC] visit to Dr Well, I am having a bad, bad day today and am not smiling. Janice From: Jeron Rampersadmailto:rumc...@hotmail.com Sent: Wednesday, October 13, 2010 8:50 PM To: jcs...@yahoo.commailto:jcs...@yahoo.com ; Transverse Myelytismailto:tmic-list@eskimo.com Subject: RE: [TMIC] visit to Dr Same story here, but this it was at my dentist's office. The dental assistant needed an update on my medical history and I asked, how long do you have? By the time I was through she was in tears. I felt really bad for her after, but it didn't end there. I had to list all the meds I'm on.spell the names of each drug then say what I take them for. By the time my dentist saw me, she was only too happy to say, well on a good note, you have really nice teeth! lol! Thank God I can still smile about our little friend called the TM monster. Jeron -- Date: Wed, 13 Oct 2010 17:28:52 -0700 From: jcs...@yahoo.com Subject: Re: [TMIC] visit to Dr To: tmic-list@eskimo.com well,,I kinda had to answer that one on the silly questioneer they always make me fill out. like doing a history everytime i go in there --- On Wed, 10/13/10, kimharrison...@comcast.net kimharrison...@comcast.net wrote: From: kimharrison...@comcast.net kimharrison...@comcast.net Subject: Re: [TMIC] visit to Dr To: tmic-list@eskimo.com Cc: transverse myelitis tmic-list@eskimo.com Date: Wednesday, October 13, 2010, 6:58 PM Oh My Gosh... sounds like my $50.00 bi yearly visit to the Nero... only difference is mikne ask how the poop and pee is going... LOL wow - Original Message - From: john snodgrass jcs...@yahoo.com To: transverse myelitis tmic-list@eskimo.com Sent: Wednesday, October 13, 2010 6:21:37 PM Subject: [TMIC] visit to Dr seen neurologist today. asked how i was I said in pain. he said im sorry upped the baclofen dosage. banged around with the nerve finder hammer. the end.
Re: [TMIC] visit to Dr
I have a very painful tailbone having to do with myelitis.Also, the spasms in legs are getting worse and I am really tired.Spent 5 days with my daughter and her family - which I loved - but probably got too tired.Just don't feel up to dealing with myelitis right now. Poor, poor Janice. Sorry guys, I'll be better tomorrow. If not, I am sure you will hear about it. Janice From: L T CHERPESKI Sent: Sunday, October 17, 2010 10:41 PM To: Jeron Rampersad ; jcs...@yahoo.com ; Transverse Myelytis ; Janice Nichols Subject: Re: [TMIC] visit to Dr Janice I'm so sorry to hear this. What's going on? hugs, Linda C - Original Message - From: Janice Nichols To: Jeron Rampersad ; jcs...@yahoo.com ; Transverse Myelytis Sent: Sunday, October 17, 2010 3:12 PM Subject: Re: [TMIC] visit to Dr Well, I am having a bad, bad day today and am not smiling. Janice From: Jeron Rampersad Sent: Wednesday, October 13, 2010 8:50 PM To: jcs...@yahoo.com ; Transverse Myelytis Subject: RE: [TMIC] visit to Dr Same story here, but this it was at my dentist's office. The dental assistant needed an update on my medical history and I asked, how long do you have? By the time I was through she was in tears. I felt really bad for her after, but it didn't end there. I had to list all the meds I'm on.spell the names of each drug then say what I take them for. By the time my dentist saw me, she was only too happy to say, well on a good note, you have really nice teeth! lol! Thank God I can still smile about our little friend called the TM monster. Jeron -- Date: Wed, 13 Oct 2010 17:28:52 -0700 From: jcs...@yahoo.com Subject: Re: [TMIC] visit to Dr To: tmic-list@eskimo.com well,,I kinda had to answer that one on the silly questioneer they always make me fill out. like doing a history everytime i go in there --- On Wed, 10/13/10, kimharrison...@comcast.net kimharrison...@comcast.net wrote: From: kimharrison...@comcast.net kimharrison...@comcast.net Subject: Re: [TMIC] visit to Dr To: tmic-list@eskimo.com Cc: transverse myelitis tmic-list@eskimo.com Date: Wednesday, October 13, 2010, 6:58 PM Oh My Gosh... sounds like my $50.00 bi yearly visit to the Nero... only difference is mikne ask how the poop and pee is going... LOL wow - Original Message - From: john snodgrass jcs...@yahoo.com To: transverse myelitis tmic-list@eskimo.com Sent: Wednesday, October 13, 2010 6:21:37 PM Subject: [TMIC] visit to Dr seen neurologist today. asked how i was I said in pain. he said im sorry upped the baclofen dosage. banged around with the nerve finder hammer. the end.
Re: [TMIC] visit to Dr
Almost a poem! LOL! At least he said I'm sorry! No doctor, nor nurse has ever said that to me. seen neurologist today. asked how i was I said in pain. he said im sorry upped the baclofen dosage. banged around with the nerve finder hammer. the end. --
Re: [TMIC] visit to Dr
Oh My Gosh... sounds like my $50.00 bi yearly visit to the Nero... only difference is mikne ask how the poop and pee is going... LOL wow - Original Message - From: john snodgrass jcs...@yahoo.com To: transverse myelitis tmic-list@eskimo.com Sent: Wednesday, October 13, 2010 6:21:37 PM Subject: [TMIC] visit to Dr seen neurologist today. asked how i was I said in pain. he said im sorry upped the baclofen dosage. banged around with the nerve finder hammer. the end.
Re: [TMIC] visit to Dr
well,,I kinda had to answer that one on the silly questioneer they always make
me fill out.
like doing a history everytime i go in there
--- On Wed, 10/13/10, kimharrison...@comcast.net kimharrison...@comcast.net
wrote:
From: kimharrison...@comcast.net kimharrison...@comcast.net
Subject: Re: [TMIC] visit to Dr
To: tmic-list@eskimo.com
Cc: transverse myelitis tmic-list@eskimo.com
Date: Wednesday, October 13, 2010, 6:58 PM
#yiv879858227 p {margin:0;}
Oh My Gosh... sounds like my $50.00 bi yearly visit to the Nero...
only difference is mikne ask how the
poop and pee is going... LOL
wow
- Original Message -
From: john snodgrass jcs...@yahoo.com
To: transverse myelitis tmic-list@eskimo.com
Sent: Wednesday, October 13, 2010 6:21:37 PM
Subject: [TMIC] visit to Dr
seen neurologist today.
asked how i was
I said in pain.
he said im sorry
upped the baclofen dosage.
banged around with the nerve finder hammer.
the end.
RE: [TMIC] visit to Dr
Same story here, but this it was at my dentist's office. The dental assistant needed an update on my medical history and I asked, how long do you have? By the time I was through she was in tears. I felt really bad for her after, but it didn't end there. I had to list all the meds I'm on.spell the names of each drug then say what I take them for. By the time my dentist saw me, she was only too happy to say, well on a good note, you have really nice teeth! lol! Thank God I can still smile about our little friend called the TM monster. Jeron Date: Wed, 13 Oct 2010 17:28:52 -0700 From: jcs...@yahoo.com Subject: Re: [TMIC] visit to Dr To: tmic-list@eskimo.com well,,I kinda had to answer that one on the silly questioneer they always make me fill out. like doing a history everytime i go in there --- On Wed, 10/13/10, kimharrison...@comcast.net kimharrison...@comcast.net wrote: From: kimharrison...@comcast.net kimharrison...@comcast.net Subject: Re: [TMIC] visit to Dr To: tmic-list@eskimo.com Cc: transverse myelitis tmic-list@eskimo.com Date: Wednesday, October 13, 2010, 6:58 PM Oh My Gosh... sounds like my $50.00 bi yearly visit to the Nero... only difference is mikne ask how the poop and pee is going... LOL wow - Original Message - From: john snodgrass jcs...@yahoo.com To: transverse myelitis tmic-list@eskimo.com Sent: Wednesday, October 13, 2010 6:21:37 PM Subject: [TMIC] visit to Dr seen neurologist today. asked how i was I said in pain. he said im sorry upped the baclofen dosage. banged around with the nerve finder hammer. the end.
Re: [TMIC] Visit with Dr. Kerr
Thanks, Rob, We'll be anxious to hear what he gives you then we can make a fast trip to our own provider to get the same! The banding sure does wear you out, doesn't it? The Lyrica does take the edge off of the pain but it never goes completely away. Jeanne ---Original Message--- From: Robert Pall Date: 7/2/2009 9:54:11 AM To: Tmic-list@eskimo.com Subject: [TMIC] Visit with Dr. Kerr I had my 11th annual checkup with Dr. Kerr yesterday and thought I would share my experience with the group. First of all I let him know what my main TM problems are which is the banding fatigue. I also told him that I could not really say if the 2 TM meds I take which are 4-Aminopyridine (potassium channel blocker) Lyrica are helping me at all. The plan we decided is that I would first wean myself of the 4-AP over the next 2 weeks and then begin to wean myself off of the Lyrica. After approx. 2 months which is the time it should take to be completely off both meds Dr. Kerr will prescribe me 2 new meds (don't ask me their names) one for the banding and another for the fatigue. He reiterated that swimming is the best exercise I can do and recommended no more than 3 hours a week and never 2 days in a row. He also stressed moderation (yeah like I will do that). Finally we spoke about the research going on now and down the pipe. Sometime in the next year human trials will begin on the newbies (onset less than 18 months) and if these prove sucessful trials will start on the TM'rs who have had TM more than 18 months. I then said that the earliest I can be treated is near 4 years from now by which time I will have had TM for 16 years. I asked him if after this long a time is a cure a realistic thing for me to base hope on .he wouldn't say no but he implied he was not at all sure if someone my age (61 now) could still be helped. This did not surprise or depress me I have been told the same thing by numerous Doctors so I will therefore accept the fact that I will always have TM and the best I can do is treat my symptoms as best as possible. Obviously new medications keep coming out and some may prove beneficial but for my head it is easier to just have acceptance and be happy I am not worse than I am ..that being said I definitley see a light at the end of the tunnel for the newbies and younger members. I will keep you all informed regarding the getting off the old meds and I will let you know the new meds (names) and the progress I make on them to be continued! Rob in New Jersey 01_tile.jpg01_side.gif
RE: [TMIC] Visit with Dr. Kerr
Jeanne...I got the feeling that Dr. Kerr is moving away from Lyrica...it was very effective at first but now I think my body is to used to it and I need to go to something else...at least I will have less munchies. I believe in my case the banding and the fatigue go hand in hand. The tighter my legs feel the more exertion I require to walk,stand etc. I am actually excited to see if going off gradually the meds if I will feel a difference. I now realize more than ever that exercise is crucial to all of our conditions...as long as it is done in moderation...I am going to do my best to keep to a schedule of going swimming 3 x per week and on the days I don't swim I will get back to sit-ups and try to strenghten my core (and maybe get rid of the beer gut). All the best! Rob PS: Dr. Kerr requested info regarding my underwater MP3 player as he swims every morning. This new MP3 player is the best and most reliable ever. It costs approx. $130 and is worth every penny. If you or anyone else in the group wants further info just let me knowit is easy to find...just Google underwater MP3 player and look for the Finis Swimp3..it is truly remarkable! From: jrushton [mailto:jrush...@columbiaenergyllc.com] Sent: Friday, July 03, 2009 12:40 AM To: Robert Pall Subject: Re: [TMIC] Visit with Dr. Kerr Thanks, Rob, We'll be anxious to hear what he gives you then we can make a fast trip to our own provider to get the same! The banding sure does wear you out, doesn't it? The Lyrica does take the edge off of the pain but it never goes completely away. Jeanne ---Original Message--- From: Robert Pall mailto:rp...@neillsupply.com Date: 7/2/2009 9:54:11 AM To: Tmic-list@eskimo.com Subject: [TMIC] Visit with Dr. Kerr I had my 11th annual checkup with Dr. Kerr yesterday and thought I would share my experience with the group. First of all I let him know what my main TM problems are ...which is the banding fatigue. I also told him that I could not really say if the 2 TM meds I take which are 4-Aminopyridine (potassium channel blocker) Lyrica are helping me at all. The plan we decided is that I would first wean myself of the 4-AP over the next 2 weeks and then begin to wean myself off of the Lyrica. After approx. 2 months which is the time it should take to be completely off both meds...Dr. Kerr will prescribe me 2 new meds (don't ask me their names)...one for the banding and another for the fatigue. He reiterated that swimming is the best exercise I can do and recommended no more than 3 hours a week and never 2 days in a row. He also stressed moderation (yeah like I will do that). Finally we spoke about the research going on now and down the pipe. Sometime in the next year human trials will begin on the newbies (onset less than 18 months)...and if these prove sucessful trials will start on the TM'rs who have had TM more than 18 months. I then said that the earliest I can be treated is near 4 years from now by which time I will have had TM for 16 years. I asked him if after this long a time is a cure a realistic thing for me to base hope onhe wouldn't say no...but he implied he was not at all sure if someone my age (61 now) could still be helped. This did not surprise or depress me...I have been told the same thing by numerous Doctors...so I will therefore accept the fact that I will always have TM and the best I can do is treat my symptoms as best as possible. Obviously new medications keep coming out and some may prove beneficial...but for my head it is easier to just have acceptance and be happy I am not worse than I am.that being said I definitley see a light at the end of the tunnel for the newbies and younger members. I will keep you all informed regarding the getting off the old meds...and I will let you know the new meds (names) and the progress I make on them...to be continued! Rob in New Jersey 01_side.gif01_tile.jpg
Re: [TMIC] Visit with Dr. Kerr
Visit with Dr. KerrRob, thanks for the info. I have talked to my neuro in the last 6 months and he told me of the studies also.The fact that the studies are getting a closer timeline is encouraging.I am at 2 1/2 years and still very hopeful. Janice - Original Message - From: Robert Pall To: Tmic-list@eskimo.com Sent: Thursday, July 02, 2009 9:54 AM Subject: [TMIC] Visit with Dr. Kerr I had my 11th annual checkup with Dr. Kerr yesterday and thought I would share my experience with the group. First of all I let him know what my main TM problems are .which is the banding fatigue. I also told him that I could not really say if the 2 TM meds I take which are 4-Aminopyridine (potassium channel blocker) Lyrica are helping me at all. The plan we decided is that I would first wean myself of the 4-AP over the next 2 weeks and then begin to wean myself off of the Lyrica. After approx. 2 months which is the time it should take to be completely off both meds.Dr. Kerr will prescribe me 2 new meds (don't ask me their names).one for the banding and another for the fatigue. He reiterated that swimming is the best exercise I can do and recommended no more than 3 hours a week and never 2 days in a row. He also stressed moderation (yeah like I will do that). Finally we spoke about the research going on now and down the pipe. Sometime in the next year human trials will begin on the newbies (onset less than 18 months).and if these prove sucessful trials will start on the TM'rs who have had TM more than 18 months. I then said that the earliest I can be treated is near 4 years from now by which time I will have had TM for 16 years. I asked him if after this long a time is a cure a realistic thing for me to base hope on..he wouldn't say no.but he implied he was not at all sure if someone my age (61 now) could still be helped. This did not surprise or depress me.I have been told the same thing by numerous Doctors.so I will therefore accept the fact that I will always have TM and the best I can do is treat my symptoms as best as possible. Obviously new medications keep coming out and some may prove beneficial.but for my head it is easier to just have acceptance and be happy I am not worse than I am...that being said I definitley see a light at the end of the tunnel for the newbies and younger members. I will keep you all informed regarding the getting off the old meds.and I will let you know the new meds (names) and the progress I make on them.to be continued! Rob in New Jersey
Re: [TMIC] Visit with Dr. Kerr
Visit with Dr. KerrRob, Thanks for the information. I am interested in finding out what the new meds are for the fatigue and banding, which are my main TM problems also. The only prescription for fatigue I have ever been informed of is Amantadine (Symmetrel) and it didn't do anything for me but give me dry mouth. For the banding, I have never been offered anything, but take Valium when spasms begin. I guess it will be a while before you find out what these news meds are, Rob, and how they work since you need to safely get off the previous meds. I wish the best for you and appreciate your promise to keep us informed. In the meantime, if anyone else knows what these mysterious are, please pass it on. Gary in Michigan - Original Message - From: Robert Pall To: Tmic-list@eskimo.com Sent: Thursday, July 02, 2009 10:54 AM Subject: [TMIC] Visit with Dr. Kerr I had my 11th annual checkup with Dr. Kerr yesterday and thought I would share my experience with the group. First of all I let him know what my main TM problems are .which is the banding fatigue. I also told him that I could not really say if the 2 TM meds I take which are 4-Aminopyridine (potassium channel blocker) Lyrica are helping me at all. The plan we decided is that I would first wean myself of the 4-AP over the next 2 weeks and then begin to wean myself off of the Lyrica. After approx. 2 months which is the time it should take to be completely off both meds.Dr. Kerr will prescribe me 2 new meds (don't ask me their names).one for the banding and another for the fatigue. He reiterated that swimming is the best exercise I can do and recommended no more than 3 hours a week and never 2 days in a row. He also stressed moderation (yeah like I will do that). Finally we spoke about the research going on now and down the pipe. Sometime in the next year human trials will begin on the newbies (onset less than 18 months).and if these prove sucessful trials will start on the TM'rs who have had TM more than 18 months. I then said that the earliest I can be treated is near 4 years from now by which time I will have had TM for 16 years. I asked him if after this long a time is a cure a realistic thing for me to base hope on..he wouldn't say no.but he implied he was not at all sure if someone my age (61 now) could still be helped. This did not surprise or depress me.I have been told the same thing by numerous Doctors.so I will therefore accept the fact that I will always have TM and the best I can do is treat my symptoms as best as possible. Obviously new medications keep coming out and some may prove beneficial.but for my head it is easier to just have acceptance and be happy I am not worse than I am...that being said I definitley see a light at the end of the tunnel for the newbies and younger members. I will keep you all informed regarding the getting off the old meds.and I will let you know the new meds (names) and the progress I make on them.to be continued! Rob in New Jersey
