Re: Our variable, frustrating, confusing condition

May 16, 2011

Dee, I think that I am using a font only a little bit darker and larger than yours.I do this not only for myself, but as so many people reading here have had re-peated attacks of optic neuritis and/or retro-bulbar optic neuritis, and have suffered visual impairment, so most of us do use a somewhat larger font. I referto MS as "Multiple Surprises," not only because that is a play on words, but because, as you have observed, it can affect each of us differently, and eachof us differently over time. Thank you for your kind and patient post.Love and hugs (Not the MS kind!) to you, Dee,n, nearly 74, diagnosed wMS at age 19 in 1956;my father had it as well. . . .To: MSersLife Sent: Mon, May 16, 2011 7:20:48 PMSubject: Re: Re: copaxone yes/no

Donna, I appreciate your enormous time/effort to respond...figured I'd upset the group with my question and the issue of my lack of disability from it. Now I'm not 100% but most people wouldn't have a clue anything was wrong. I took avonex for 6 years and just couldn't do it anymore. I've been on effexor since the mid 90's and the extended release for about 9 years now since it is suppose to work better for those that suffer from the 'withdrawal syndrome' which I definitely do. I actually had it increased recently when I had whatever it was in the fall go on with my health on top of many other issues which combined just about pushed me over the edge. To top it off I imagine my hormones are starting to be erratic as I am in my mid 40's and the Shaklee supplements for pms and

menopause balance seem to help in those times a bit. I even found a counselor that is very focused so we are slowly getting through those hidden issues and current ones if they are apparent. I've not had a counselor since the first few years of my effexor and I didn't really feel there was a need. The episode in the fall is what brought me back to the neurologist. It was totally unlike my original episode so didn't make the connection...however it did include the ms hug I believe which gives my neuro a little credibility. Apparently my neuro is a big advocate of ms treatment and research. I don't know that much about him really but he was local and I decided to go ahead and make the switch. Avonex was something I finally decided I just couldn't do any longer. Copaxone will likely be one I can tolerate but am being a cry baby about the lymph node flares, mouth bubbles/sores, spasms in my collar/throat which are like someone doing a big fat pinch

(a 5-6 pain level out of 10), and the last few days my face has been hurting in small pulsing pains of about a 3-4 on a scale of 10, the jaw area to each side of my mouth and today just under my cheek bones. The shots themselves are easy, like a bee sting and then a few days of red (itch sometimes) and then just a lump for about a week. Also I think nausea is a side effect, as slight as it is, just before I start dinner prep. I was reading on one site that discusses the copaxone in a scientific but consumer relative manner and it has user reviews. All my symptoms are accounted for except the pain in the jaw/face I think. I did find comfort in the fact that there were people taking it that have much worse side effects they are coping with in order to take the med and still are thankful to be taking it. Also some that didn't have anything except site reactions. Lucky ducks. I also read some that suspected that it left them vulnerable to other

serious illnesses, even cancer. I understand the studies don't show this to be the case but I have to wonder and just wait and see how often I do get sick. When I was on avonex I don't recall having more than maybe 2 colds in the 6 years. It seemed to really do something in that department. With what is going on with the copaxone it has left to to be curious as to what I could be vulnerable to. All in all, I suppose with something so serious I shouldn't play chicken with it because if I make the decision to stop and my immune system attacks something important...there are not likely to be any do-overs. Please forgive my misinterpretation about the lack of response to my question. Figured you all just wanted to bonk me for being such a silly cry baby...which I am but not typically. This change of lifestyle and new limitations go against all my identity and worldview is wrapped up in. In face I have an assignment as to

where my views are derived regarding needing help, being dependent, etc. I haven't a clue but it makes me cry on a dime~ grief, shame, guilt, fear, all things that rush through me like a run away train. Is there a reason most of you type so big? I could increase my font if it is helpful~ Thank you again Donna for responding, I really am glad you're not upset for my questions.Dee

May 17, 2011

Dee, and n,I too use the larger, darker font. I suffered only once from ON. I thinkthe main reason I do it, is I had a detached retina back in 1984 which leftmy right (dominant) eye with an area of blindness. So, I appreciate largerfont myself.Thanks!love to all,KateTo:

MSersLife Sent: Mon, May 16, 2011 11:16:23 PMSubject: Re: Our variable, frustrating, confusing condition

Dee, I think that I am using a font only a little bit darker and larger than yours.I do this not only for myself, but as so many people reading here have had re-peated attacks of optic neuritis and/or retro-bulbar optic neuritis, and have suffered visual impairment, so most of us do use a somewhat larger font. I referto MS as "Multiple Surprises," not only because that is a play on words, but because, as you have observed, it can affect each of us differently, and eachof us differently over time. Thank you for your kind and patient post.Love and hugs (Not the MS kind!) to you, Dee,n, nearly 74, diagnosed wMS at age 19 in 1956;my father had it as well. . . .To: MSersLife Sent: Mon, May 16, 2011 7:20:48 PMSubject: Re: Re: copaxone yes/no

Donna, I appreciate your enormous time/effort to respond...figured I'd upset the group with my question and the issue of my lack of disability from it. Now I'm not 100% but most people wouldn't have a clue anything was wrong. I took avonex for 6 years and just couldn't do it anymore. I've been on effexor since the mid 90's and the extended release for about 9 years now since it is suppose to work better for those that suffer from the 'withdrawal syndrome' which I definitely do. I actually had it increased recently when I had whatever it was in the fall go on with my health on top of many other issues which combined just about pushed me over the edge. To top it off I imagine my hormones are starting to be erratic as I am in my mid 40's and the Shaklee supplements for pms and

menopause balance seem to help in those times a bit. I even found a counselor that is very focused so we are slowly getting through those hidden issues and current ones if they are apparent. I've not had a counselor since the first few years of my effexor and I didn't really feel there was a need. The episode in the fall is what brought me back to the neurologist. It was totally unlike my original episode so didn't make the connection...however it did include the ms hug I believe which gives my neuro a little credibility. Apparently my neuro is a big advocate of ms treatment and research. I don't know that much about him really but he was local and I decided to go ahead and make the switch. Avonex was something I finally decided I just couldn't do any longer. Copaxone will likely be one I can tolerate but am being a cry baby about the lymph node flares, mouth bubbles/sores, spasms in my collar/throat which are like someone doing a big fat pinch

(a 5-6 pain level out of 10), and the last few days my face has been hurting in small pulsing pains of about a 3-4 on a scale of 10, the jaw area to each side of my mouth and today just under my cheek bones. The shots themselves are easy, like a bee sting and then a few days of red (itch sometimes) and then just a lump for about a week. Also I think nausea is a side effect, as slight as it is, just before I start dinner prep. I was reading on one site that discusses the copaxone in a scientific but consumer relative manner and it has user reviews. All my symptoms are accounted for except the pain in the jaw/face I think. I did find comfort in the fact that there were people taking it that have much worse side effects they are coping with in order to take the med and still are thankful to be taking it. Also some that didn't have anything except site reactions. Lucky ducks. I also read some that suspected that it left them vulnerable to other

serious illnesses, even cancer. I understand the studies don't show this to be the case but I have to wonder and just wait and see how often I do get sick. When I was on avonex I don't recall having more than maybe 2 colds in the 6 years. It seemed to really do something in that department. With what is going on with the copaxone it has left to to be curious as to what I could be vulnerable to. All in all, I suppose with something so serious I shouldn't play chicken with it because if I make the decision to stop and my immune system attacks something important...there are not likely to be any do-overs. Please forgive my misinterpretation about the lack of response to my question. Figured you all just wanted to bonk me for being such a silly cry baby...which I am but not typically. This change of lifestyle and new limitations go against all my identity and worldview is wrapped up in. In face I have an assignment as to

where my views are derived regarding needing help, being dependent, etc. I haven't a clue but it makes me cry on a dime~ grief, shame, guilt, fear, all things that rush through me like a run away train. Is there a reason most of you type so big? I could increase my font if it is helpful~ Thank you again Donna for responding, I really am glad you're not upset for my questions.Dee

May 17, 2011

Multiple Surprises, that is more fun that what it actually stands for...perspective is so important isn't it? thank you n~DeeTo: MSersLife Sent: Mon, May 16, 2011 10:16:23 PMSubject: Re: Our variable,

frustrating, confusing condition

Dee, I think that I am using a font only a little bit darker and larger than yours.I do this not only for myself, but as so many people reading here have had re-peated attacks of optic neuritis and/or retro-bulbar optic neuritis, and have suffered visual impairment, so most of us do use a somewhat larger font. I referto MS as "Multiple Surprises," not only because that is a play on words, but because, as you have observed, it can affect each of us differently, and eachof us differently over time. Thank you for your kind and patient post.Love and hugs (Not the MS kind!) to you, Dee,n, nearly 74, diagnosed wMS at age 19 in 1956;my father had it as well. . . .To: MSersLife Sent: Mon, May 16, 2011 7:20:48 PMSubject: Re: Re: copaxone yes/no

Donna, I appreciate your enormous time/effort to respond...figured I'd upset the group with my question and the issue of my lack of disability from it. Now I'm not 100% but most people wouldn't have a clue anything was wrong. I took avonex for 6 years and just couldn't do it anymore. I've been on effexor since the mid 90's and the extended release for about 9 years now since it is suppose to work better for those that suffer from the 'withdrawal syndrome' which I definitely do. I actually had it increased recently when I had whatever it was in the fall go on with my health on top of many other issues which combined just about pushed me over the edge. To top it off I imagine my hormones are starting to be erratic as I am in my mid 40's and the Shaklee supplements for pms and

menopause balance seem to help in those times a bit. I even found a counselor that is very focused so we are slowly getting through those hidden issues and current ones if they are apparent. I've not had a counselor since the first few years of my effexor and I didn't really feel there was a need. The episode in the fall is what brought me back to the neurologist. It was totally unlike my original episode so didn't make the connection...however it did include the ms hug I believe which gives my neuro a little credibility. Apparently my neuro is a big advocate of ms treatment and research. I don't know that much about him really but he was local and I decided to go ahead and make the switch. Avonex was something I finally decided I just couldn't do any longer. Copaxone will likely be one I can tolerate but am being a cry baby about the lymph node flares, mouth bubbles/sores, spasms in my collar/throat which are like someone doing a big fat pinch

(a 5-6 pain level out of 10), and the last few days my face has been hurting in small pulsing pains of about a 3-4 on a scale of 10, the jaw area to each side of my mouth and today just under my cheek bones. The shots themselves are easy, like a bee sting and then a few days of red (itch sometimes) and then just a lump for about a week. Also I think nausea is a side effect, as slight as it is, just before I start dinner prep. I was reading on one site that discusses the copaxone in a scientific but consumer relative manner and it has user reviews. All my symptoms are accounted for except the pain in the jaw/face I think. I did find comfort in the fact that there were people taking it that have much worse side effects they are coping with in order to take the med and still are thankful to be taking it. Also some that didn't have anything except site reactions. Lucky ducks. I also read some that suspected that it left them vulnerable to other

serious illnesses, even cancer. I understand the studies don't show this to be the case but I have to wonder and just wait and see how often I do get sick. When I was on avonex I don't recall having more than maybe 2 colds in the 6 years. It seemed to really do something in that department. With what is going on with the copaxone it has left to to be curious as to what I could be vulnerable to. All in all, I suppose with something so serious I shouldn't play chicken with it because if I make the decision to stop and my immune system attacks something important...there are not likely to be any do-overs. Please forgive my misinterpretation about the lack of response to my question. Figured you all just wanted to bonk me for being such a silly cry baby...which I am but not typically. This change of lifestyle and new limitations go against all my identity and worldview is wrapped up in. In face I have an assignment as to

where my views are derived regarding needing help, being dependent, etc. I haven't a clue but it makes me cry on a dime~ grief, shame, guilt, fear, all things that rush through me like a run away train. Is there a reason most of you type so big? I could increase my font if it is helpful~ Thank you again Donna for responding, I really am glad you're not upset for my questions.Dee

May 17, 2011

Is my font okay? To me it looks okay but I thought I would check. 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: Tue, May 17, 2011 5:33:28 AMSubject: Re: Our variable, frustrating, confusing condition