Re: to take DMTs or not??......Re: copaxone yes/no

[Guest guest]

Thanks for the words anyways Sharon, it does help to have views. Strange you have to feel crappy to prevent an even crappier feeling~ lolHey, will look up the TM, my avonex neuro put that out there but thought they just wouldn't know if it perhaps was just that or if the avonex had been keeping relapses of actual ms at bay. I took it and ran the other direction telling myself perhaps I really didn't have ms. It like other disorders (?) take pretty much control of things don't they? so someone controlling may have more difficulty settling into a life of uncontrolled circumstances~ hmmm.Is there anyone else in the group that is not hugely impacted by ms at this point?

gratefully,DeeTo: MSersLife Sent: Mon, May 16, 2011 4:58:06 PMSubject: to take DMTs or not??......Re: copaxone yes/no

Dee... You bring up a question that doesn't have an easy answer. I have no experience with copaxone so I don't know what to say about that. I do know that I would have a hard, hard time doing a shot every single day. The only disease modifying therapy (DMT) I've ever been on was Avonex. I didn't have too much trouble with it but I did have a "down" day or two every week from it. I was on it for 5 years and quit because I got sick of the shots. I know the thought is to be on a DMT as a preventative measure to prevent more MS events from happening. I was first dxed with Transverse Myelitis and I am still friends with many from the TM community. I am thankful there IS

treatment for MS. I know the TMers wish there were similar treatments for TM as there are for MS. When I was trying to decide whether to start Avonex or not my friends with TM told me to be thankful there was some sort of real treatment! Even thought I understood I was lucky to have the drug choice I don't know if I would have agreed to Avonex if I wasn't experiencing a significant degree of disability from the MS. I wish I could help you with your questions, but, alas I cannot. It's a hard decision and one that only you can make. I do wish you luck!hugs SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and

in no way are to be considered flaws or defects. To: MSersLife Sent: Sun, May 15, 2011 5:10:41 PMSubject: copaxone yes/no

Hi there~ looking for opinions about my meds. Ultimately I have to make the decision but am interested in any thoughts from you guys as it appears most if not all of you have ms to a much more serious degree. I've been taking copaxone now for 2.5 months, not long. Hate the sites left by the shots but not much of an issue really at this point...ask me in about a year when I've run out of tissue to poke without a lump~ ugh. My issue is how it sets my system off to feeling "run down" like with lymph nodes in my neck near the ears, bubble once or twice a week on my tongue, and afternoon/early evening nausea though only slight. I don't want to feel crappy all the time, like I'm "coming down with a virus" or something. Granted it is much less intrusive than the Avonex was, as it made me feel like I was aging intensely by the day, with my quality of life suffering terribly. My quandary comes in the form of the fact that I am not disabled by my ms, not even

sure if it is effecting anything at this point; I am not convinced that my pain episode and symmetrical tendon issues are a result of the ms (thinking poly-myalgia); there is a possibility that I may not have any more ms episodes (only one o-band and a C7 lesion, possible small brain lesions at one time). Is it really worth the symptoms of the medications? that is what I am struggling with because it is a quality of life issue that is different from what many of you are facing and have discussed. For many it would be an improvement to take the meds and their side effects...for me it is a matter of possible prevention and not "improvement". Again, any helpful thoughts would be appreciated as I am pretty self-absorbed with my crappy feeling issues and may not be seeing things clearly.thanks so much Dee------------------------------------

[Guest guest]

There are different degrees of the physical part of MS but we are all affected by the emotional part. Some of us are quite disabled and others are mildly disabled or barely disabled. The disabilities of MS don't always show (as you know). The emotional upheaval you are feeling may be from hormone stuff or it could be MS related. Do you cry at inappropriate times? Most of the people I know with TM are paralyzed to varying degrees. One man can only use a straw to type. Another is paralyzed from the chest down. One woman I know is paralyzed from the chest down and can't sit up. It's very humbling to be a TMer with milder disability for sure. When I had my TM attack I became totally numb from the lower ribs to my toes on the left

side. I had zero sensation. I could walk but I had to drag my leg. I lost total control of my bladder. I had pain in my back at the area of the beginning numbness. But mostly it was pain free. All of this happened within 3 hours. hugs SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. To: MSersLife Sent: Mon, May 16, 2011 7:34:10 PMSubject: Re: to take DMTs or not??......Re: copaxone yes/no

Thanks for the words anyways Sharon, it does help to have views. Strange you have to feel crappy to prevent an even crappier feeling~ lolHey, will look up the TM, my avonex neuro put that out there but thought they just wouldn't know if it perhaps was just that or if the avonex had been keeping relapses of actual ms at bay. I took it and ran the other direction telling myself perhaps I really didn't have ms. It like other disorders (?) take pretty much control of things don't they? so someone controlling may have more difficulty settling into a life of uncontrolled circumstances~ hmmm.Is there anyone else in the group that is not hugely impacted by ms at this point?

gratefully,DeeTo: MSersLife Sent: Mon, May 16, 2011 4:58:06 PMSubject: to take DMTs or not??......Re: copaxone yes/no

Dee... You bring up a question that doesn't have an easy answer. I have no experience with copaxone so I don't know what to say about that. I do know that I would have a hard, hard time doing a shot every single day. The only disease modifying therapy (DMT) I've ever been on was Avonex. I didn't have too much trouble with it but I did have a "down" day or two every week from it. I was on it for 5 years and quit because I got sick of the shots. I know the thought is to be on a DMT as a preventative measure to prevent more MS events from happening. I was first dxed with Transverse Myelitis and I am still friends with many from the TM community. I am thankful there IS

treatment for MS. I know the TMers wish there were similar treatments for TM as there are for MS. When I was trying to decide whether to start Avonex or not my friends with TM told me to be thankful there was some sort of real treatment! Even thought I understood I was lucky to have the drug choice I don't know if I would have agreed to Avonex if I wasn't experiencing a significant degree of disability from the MS. I wish I could help you with your questions, but, alas I cannot. It's a hard decision and one that only you can make. I do wish you luck!hugs SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and

in no way are to be considered flaws or defects. To: MSersLife Sent: Sun, May 15, 2011 5:10:41 PMSubject: copaxone yes/no

Hi there~ looking for opinions about my meds. Ultimately I have to make the decision but am interested in any thoughts from you guys as it appears most if not all of you have ms to a much more serious degree. I've been taking copaxone now for 2.5 months, not long. Hate the sites left by the shots but not much of an issue really at this point...ask me in about a year when I've run out of tissue to poke without a lump~ ugh. My issue is how it sets my system off to feeling "run down" like with lymph nodes in my neck near the ears, bubble once or twice a week on my tongue, and afternoon/early evening nausea though only slight. I don't want to feel crappy all the time, like I'm "coming down with a virus" or something. Granted it is much less intrusive than the Avonex was, as it made me feel like I was aging intensely by the day, with my quality of life suffering terribly. My quandary comes in the form of the fact that I am not disabled by my ms, not even

sure if it is effecting anything at this point; I am not convinced that my pain episode and symmetrical tendon issues are a result of the ms (thinking poly-myalgia); there is a possibility that I may not have any more ms episodes (only one o-band and a C7 lesion, possible small brain lesions at one time). Is it really worth the symptoms of the medications? that is what I am struggling with because it is a quality of life issue that is different from what many of you are facing and have discussed. For many it would be an improvement to take the meds and their side effects...for me it is a matter of possible prevention and not "improvement". Again, any helpful thoughts would be appreciated as I am pretty self-absorbed with my crappy feeling issues and may not be seeing things clearly.thanks so much Dee------------------------------------

[Guest guest]

Dee normally Chuck does pretty good. Some days his walking is bad but other than

that hes hanging in there.

Hugs

nne

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> copaxone yes/no

>

> Hi there~ looking for opinions about my meds. Ultimately I have to make

> the

> decision but am interested in any thoughts from you guys as it appears

> most if

> not all of you have ms to a much more serious degree. I've been taking

> copaxone

> now for 2.5 months, not long. Hate the sites left by the shots but not

> much of

> an issue really at this point...ask me in about a year when I've run out

> of

> tissue to poke without a lump~ ugh. My issue is how it sets my system off

> to

> feeling " run down " like with lymph nodes in my neck near the ears, bubble

> once

> or twice a week on my tongue, and afternoon/early evening nausea though

> only

> slight. I don't want to feel crappy all the time, like I'm " coming down

> with a

> virus " or something. Granted it is much less intrusive than the Avonex

> was, as

> it made me feel like I was aging intensely by the day, with my quality of

> life

> suffering terribly.

>

> My quandary comes in the form of the fact that I am not disabled by my

> ms, not

> even sure if it is effecting anything at this point; I am not convinced

> that my

> pain episode and symmetrical tendon issues are a result of the ms

> (thinking

> poly-myalgia); there is a possibility that I may not have any more ms

> episodes

> (only one o-band and a C7 lesion, possible small brain lesions at one

> time). Is

> it really worth the symptoms of the medications? that is what I am

> struggling

> with because it is a quality of life issue that is different from what

> many of

> you are facing and have discussed. For many it would be an improvement to

> take

> the meds and their side effects...for me it is a matter of possible

> prevention

> and not " improvement " . Again, any helpful thoughts would be appreciated

> as I am

> pretty self-absorbed with my crappy feeling issues and may not be seeing

> things

> clearly.

> thanks so much

> Dee

>

>

>

> ------------------------------------

>

>

[Guest guest]

yes, emotional responses do seem to run rampant don't they? sometimes angry, sometimes sorrowful. It gives a whole new meaning to pity party at times when having to restructure your life. I'm going to do some research and find a book to read about being a gracious receiver of help, acceptance of needing help, that sort of thing. I have a great analogy and it is logically understood but knowing is not the same as putting it into practice. such a long way to go. thank you for the encouragement & discussion.DeeTo: MSersLife Sent: Mon, May 16, 2011 10:45:34 PMSubject: Re: to take DMTs or not??......Re: copaxone yes/no

There are different degrees of the physical part of MS but we are all affected by the emotional part. Some of us are quite disabled and others are mildly disabled or barely disabled. The disabilities of MS don't always show (as you know). The emotional upheaval you are feeling may be from hormone stuff or it could be MS related. Do you cry at inappropriate times? Most of the people I know with TM are paralyzed to varying degrees. One man can only use a straw to type. Another is paralyzed from the chest down. One woman I know is paralyzed from the chest down and can't sit up. It's very humbling to be a TMer with milder disability for sure. When I had my TM attack I became totally numb from the lower ribs to my toes on the left

side. I had zero sensation. I could walk but I had to drag my leg. I lost total control of my bladder. I had pain in my back at the area of the beginning numbness. But mostly it was pain free. All of this happened within 3 hours. hugs SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. To: MSersLife Sent: Mon, May 16, 2011 7:34:10 PMSubject: Re: to take DMTs or not??......Re: copaxone yes/no

Thanks for the words anyways Sharon, it does help to have views. Strange you have to feel crappy to prevent an even crappier feeling~ lolHey, will look up the TM, my avonex neuro put that out there but thought they just wouldn't know if it perhaps was just that or if the avonex had been keeping relapses of actual ms at bay. I took it and ran the other direction telling myself perhaps I really didn't have ms. It like other disorders (?) take pretty much control of things don't they? so someone controlling may have more difficulty settling into a life of uncontrolled circumstances~ hmmm.Is there anyone else in the group that is not hugely impacted by ms at this point?

gratefully,DeeTo: MSersLife Sent: Mon, May 16, 2011 4:58:06 PMSubject: to take DMTs or not??......Re: copaxone yes/no

Dee... You bring up a question that doesn't have an easy answer. I have no experience with copaxone so I don't know what to say about that. I do know that I would have a hard, hard time doing a shot every single day. The only disease modifying therapy (DMT) I've ever been on was Avonex. I didn't have too much trouble with it but I did have a "down" day or two every week from it. I was on it for 5 years and quit because I got sick of the shots. I know the thought is to be on a DMT as a preventative measure to prevent more MS events from happening. I was first dxed with Transverse Myelitis and I am still friends with many from the TM community. I am thankful there IS

treatment for MS. I know the TMers wish there were similar treatments for TM as there are for MS. When I was trying to decide whether to start Avonex or not my friends with TM told me to be thankful there was some sort of real treatment! Even thought I understood I was lucky to have the drug choice I don't know if I would have agreed to Avonex if I wasn't experiencing a significant degree of disability from the MS. I wish I could help you with your questions, but, alas I cannot. It's a hard decision and one that only you can make. I do wish you luck!hugs SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and

in no way are to be considered flaws or defects. To: MSersLife Sent: Sun, May 15, 2011 5:10:41 PMSubject: copaxone yes/no

Hi there~ looking for opinions about my meds. Ultimately I have to make the decision but am interested in any thoughts from you guys as it appears most if not all of you have ms to a much more serious degree. I've been taking copaxone now for 2.5 months, not long. Hate the sites left by the shots but not much of an issue really at this point...ask me in about a year when I've run out of tissue to poke without a lump~ ugh. My issue is how it sets my system off to feeling "run down" like with lymph nodes in my neck near the ears, bubble once or twice a week on my tongue, and afternoon/early evening nausea though only slight. I don't want to feel crappy all the time, like I'm "coming down with a virus" or something. Granted it is much less intrusive than the Avonex was, as it made me feel like I was aging intensely by the day, with my quality of life suffering terribly. My quandary comes in the form of the fact that I am not disabled by my ms, not even

sure if it is effecting anything at this point; I am not convinced that my pain episode and symmetrical tendon issues are a result of the ms (thinking poly-myalgia); there is a possibility that I may not have any more ms episodes (only one o-band and a C7 lesion, possible small brain lesions at one time). Is it really worth the symptoms of the medications? that is what I am struggling with because it is a quality of life issue that is different from what many of you are facing and have discussed. For many it would be an improvement to take the meds and their side effects...for me it is a matter of possible prevention and not "improvement". Again, any helpful thoughts would be appreciated as I am pretty self-absorbed with my crappy feeling issues and may not be seeing things clearly.thanks so much Dee------------------------------------

[Guest guest]

yes, emotional responses do seem to run rampant don't they? sometimes angry, sometimes sorrowful. It gives a whole new meaning to pity party at times when having to restructure your life. I'm going to do some research and find a book to read about being a gracious receiver of help, acceptance of needing help, that sort of thing. I have a great analogy and it is logically understood but knowing is not the same as putting it into practice. such a long way to go. thank you for the encouragement & discussion.DeeTo: MSersLife Sent: Mon, May 16, 2011 10:45:34 PMSubject: Re: to take DMTs or not??......Re: copaxone yes/no

There are different degrees of the physical part of MS but we are all affected by the emotional part. Some of us are quite disabled and others are mildly disabled or barely disabled. The disabilities of MS don't always show (as you know). The emotional upheaval you are feeling may be from hormone stuff or it could be MS related. Do you cry at inappropriate times? Most of the people I know with TM are paralyzed to varying degrees. One man can only use a straw to type. Another is paralyzed from the chest down. One woman I know is paralyzed from the chest down and can't sit up. It's very humbling to be a TMer with milder disability for sure. When I had my TM attack I became totally numb from the lower ribs to my toes on the left

side. I had zero sensation. I could walk but I had to drag my leg. I lost total control of my bladder. I had pain in my back at the area of the beginning numbness. But mostly it was pain free. All of this happened within 3 hours. hugs SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. To: MSersLife Sent: Mon, May 16, 2011 7:34:10 PMSubject: Re: to take DMTs or not??......Re: copaxone yes/no

Thanks for the words anyways Sharon, it does help to have views. Strange you have to feel crappy to prevent an even crappier feeling~ lolHey, will look up the TM, my avonex neuro put that out there but thought they just wouldn't know if it perhaps was just that or if the avonex had been keeping relapses of actual ms at bay. I took it and ran the other direction telling myself perhaps I really didn't have ms. It like other disorders (?) take pretty much control of things don't they? so someone controlling may have more difficulty settling into a life of uncontrolled circumstances~ hmmm.Is there anyone else in the group that is not hugely impacted by ms at this point?

gratefully,DeeTo: MSersLife Sent: Mon, May 16, 2011 4:58:06 PMSubject: to take DMTs or not??......Re: copaxone yes/no

Dee... You bring up a question that doesn't have an easy answer. I have no experience with copaxone so I don't know what to say about that. I do know that I would have a hard, hard time doing a shot every single day. The only disease modifying therapy (DMT) I've ever been on was Avonex. I didn't have too much trouble with it but I did have a "down" day or two every week from it. I was on it for 5 years and quit because I got sick of the shots. I know the thought is to be on a DMT as a preventative measure to prevent more MS events from happening. I was first dxed with Transverse Myelitis and I am still friends with many from the TM community. I am thankful there IS

treatment for MS. I know the TMers wish there were similar treatments for TM as there are for MS. When I was trying to decide whether to start Avonex or not my friends with TM told me to be thankful there was some sort of real treatment! Even thought I understood I was lucky to have the drug choice I don't know if I would have agreed to Avonex if I wasn't experiencing a significant degree of disability from the MS. I wish I could help you with your questions, but, alas I cannot. It's a hard decision and one that only you can make. I do wish you luck!hugs SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and

in no way are to be considered flaws or defects. To: MSersLife Sent: Sun, May 15, 2011 5:10:41 PMSubject: copaxone yes/no

Hi there~ looking for opinions about my meds. Ultimately I have to make the decision but am interested in any thoughts from you guys as it appears most if not all of you have ms to a much more serious degree. I've been taking copaxone now for 2.5 months, not long. Hate the sites left by the shots but not much of an issue really at this point...ask me in about a year when I've run out of tissue to poke without a lump~ ugh. My issue is how it sets my system off to feeling "run down" like with lymph nodes in my neck near the ears, bubble once or twice a week on my tongue, and afternoon/early evening nausea though only slight. I don't want to feel crappy all the time, like I'm "coming down with a virus" or something. Granted it is much less intrusive than the Avonex was, as it made me feel like I was aging intensely by the day, with my quality of life suffering terribly. My quandary comes in the form of the fact that I am not disabled by my ms, not even

sure if it is effecting anything at this point; I am not convinced that my pain episode and symmetrical tendon issues are a result of the ms (thinking poly-myalgia); there is a possibility that I may not have any more ms episodes (only one o-band and a C7 lesion, possible small brain lesions at one time). Is it really worth the symptoms of the medications? that is what I am struggling with because it is a quality of life issue that is different from what many of you are facing and have discussed. For many it would be an improvement to take the meds and their side effects...for me it is a matter of possible prevention and not "improvement". Again, any helpful thoughts would be appreciated as I am pretty self-absorbed with my crappy feeling issues and may not be seeing things clearly.thanks so much Dee------------------------------------

[Guest guest]

yes, emotional responses do seem to run rampant don't they? sometimes angry, sometimes sorrowful. It gives a whole new meaning to pity party at times when having to restructure your life. I'm going to do some research and find a book to read about being a gracious receiver of help, acceptance of needing help, that sort of thing. I have a great analogy and it is logically understood but knowing is not the same as putting it into practice. such a long way to go. thank you for the encouragement & discussion.DeeTo: MSersLife Sent: Mon, May 16, 2011 10:45:34 PMSubject: Re: to take DMTs or not??......Re: copaxone yes/no

There are different degrees of the physical part of MS but we are all affected by the emotional part. Some of us are quite disabled and others are mildly disabled or barely disabled. The disabilities of MS don't always show (as you know). The emotional upheaval you are feeling may be from hormone stuff or it could be MS related. Do you cry at inappropriate times? Most of the people I know with TM are paralyzed to varying degrees. One man can only use a straw to type. Another is paralyzed from the chest down. One woman I know is paralyzed from the chest down and can't sit up. It's very humbling to be a TMer with milder disability for sure. When I had my TM attack I became totally numb from the lower ribs to my toes on the left

side. I had zero sensation. I could walk but I had to drag my leg. I lost total control of my bladder. I had pain in my back at the area of the beginning numbness. But mostly it was pain free. All of this happened within 3 hours. hugs SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. To: MSersLife Sent: Mon, May 16, 2011 7:34:10 PMSubject: Re: to take DMTs or not??......Re: copaxone yes/no

Thanks for the words anyways Sharon, it does help to have views. Strange you have to feel crappy to prevent an even crappier feeling~ lolHey, will look up the TM, my avonex neuro put that out there but thought they just wouldn't know if it perhaps was just that or if the avonex had been keeping relapses of actual ms at bay. I took it and ran the other direction telling myself perhaps I really didn't have ms. It like other disorders (?) take pretty much control of things don't they? so someone controlling may have more difficulty settling into a life of uncontrolled circumstances~ hmmm.Is there anyone else in the group that is not hugely impacted by ms at this point?

gratefully,DeeTo: MSersLife Sent: Mon, May 16, 2011 4:58:06 PMSubject: to take DMTs or not??......Re: copaxone yes/no

Dee... You bring up a question that doesn't have an easy answer. I have no experience with copaxone so I don't know what to say about that. I do know that I would have a hard, hard time doing a shot every single day. The only disease modifying therapy (DMT) I've ever been on was Avonex. I didn't have too much trouble with it but I did have a "down" day or two every week from it. I was on it for 5 years and quit because I got sick of the shots. I know the thought is to be on a DMT as a preventative measure to prevent more MS events from happening. I was first dxed with Transverse Myelitis and I am still friends with many from the TM community. I am thankful there IS

treatment for MS. I know the TMers wish there were similar treatments for TM as there are for MS. When I was trying to decide whether to start Avonex or not my friends with TM told me to be thankful there was some sort of real treatment! Even thought I understood I was lucky to have the drug choice I don't know if I would have agreed to Avonex if I wasn't experiencing a significant degree of disability from the MS. I wish I could help you with your questions, but, alas I cannot. It's a hard decision and one that only you can make. I do wish you luck!hugs SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and

in no way are to be considered flaws or defects. To: MSersLife Sent: Sun, May 15, 2011 5:10:41 PMSubject: copaxone yes/no

Hi there~ looking for opinions about my meds. Ultimately I have to make the decision but am interested in any thoughts from you guys as it appears most if not all of you have ms to a much more serious degree. I've been taking copaxone now for 2.5 months, not long. Hate the sites left by the shots but not much of an issue really at this point...ask me in about a year when I've run out of tissue to poke without a lump~ ugh. My issue is how it sets my system off to feeling "run down" like with lymph nodes in my neck near the ears, bubble once or twice a week on my tongue, and afternoon/early evening nausea though only slight. I don't want to feel crappy all the time, like I'm "coming down with a virus" or something. Granted it is much less intrusive than the Avonex was, as it made me feel like I was aging intensely by the day, with my quality of life suffering terribly. My quandary comes in the form of the fact that I am not disabled by my ms, not even

sure if it is effecting anything at this point; I am not convinced that my pain episode and symmetrical tendon issues are a result of the ms (thinking poly-myalgia); there is a possibility that I may not have any more ms episodes (only one o-band and a C7 lesion, possible small brain lesions at one time). Is it really worth the symptoms of the medications? that is what I am struggling with because it is a quality of life issue that is different from what many of you are facing and have discussed. For many it would be an improvement to take the meds and their side effects...for me it is a matter of possible prevention and not "improvement". Again, any helpful thoughts would be appreciated as I am pretty self-absorbed with my crappy feeling issues and may not be seeing things clearly.thanks so much Dee------------------------------------