Aa
Need a talkin' to
Hi All,
Feeling like I need a stong talking to. I had my follow up appt. today and discussed meds. Short of it is, the Dr. is putting me on Rebif. We discussed the differences between Copaxone and Rebif. I'm still on the other side of the coin where I'm struggling between: knowing I don't want the disease and symptoms to progress, and all those "but if's" and they are wrong, and the meds, in the long term will hurt me somehow. I must be nuts, but don't know who else to pose this to.
Just talking out loud,
Thanks for listening,
SL
Feeling like I need a stong talking to. I had my follow up appt. today and discussed meds. Short of it is, the Dr. is putting me on Rebif. We discussed the differences between Copaxone and Rebif. I'm still on the other side of the coin where I'm struggling between: knowing I don't want the disease and symptoms to progress, and all those "but if's" and they are wrong, and the meds, in the long term will hurt me somehow. I must be nuts, but don't know who else to pose this to.
Just talking out loud,
Thanks for listening,
SL
I have several friends who have MS we call our area MS alley,so many here have MS,they are doing very well with their meds.
Like I said this disease effects us all diferently,its good that you are handling this as a family.
Keep a positive attitude and take each day as they are.
Like I said this disease effects us all diferently,its good that you are handling this as a family.
Keep a positive attitude and take each day as they are.
Hi there,
Thank you both so very much. You've given me what I need, and so much more. Wouldn't it be great if "dire tones" were downloadable, that way when you get off track, bam, there they are, chiming in, over and over. . .
T-lynn, I'm almost embarrassed to hesitate w/meds after hearing your day-to-day struggles, clearly, for you and Quix, and many others, had they been offered earlier, your present and future may have presented a different path.
I'm at a lost for the right word that describes what you do for the members of the board, one that would describe the humanity in the advice, knowledge, experience and time you put into helping others.
Quix, you pegged me from the beginning and I'm grateful for the tough love, I need it.
My next step is to wait on the call from the nurse, who'll come out to the house and get me set up, and in the meantime, I'm going to dig throught the bags of CRAB giveaways, find the CD on Rebif and sit down with the hubby and kids so we are get educated.
You are both so inspirational - thank you,
SL
Thank you both so very much. You've given me what I need, and so much more. Wouldn't it be great if "dire tones" were downloadable, that way when you get off track, bam, there they are, chiming in, over and over. . .
T-lynn, I'm almost embarrassed to hesitate w/meds after hearing your day-to-day struggles, clearly, for you and Quix, and many others, had they been offered earlier, your present and future may have presented a different path.
I'm at a lost for the right word that describes what you do for the members of the board, one that would describe the humanity in the advice, knowledge, experience and time you put into helping others.
Quix, you pegged me from the beginning and I'm grateful for the tough love, I need it.
My next step is to wait on the call from the nurse, who'll come out to the house and get me set up, and in the meantime, I'm going to dig throught the bags of CRAB giveaways, find the CD on Rebif and sit down with the hubby and kids so we are get educated.
You are both so inspirational - thank you,
SL
Tough love is what got me through my roughest time with my dx,a friend of mine with ms really give me the what nots and what forth and told me I had 2 choices give in or fight it.She was a great inspiration.
We all need tough love.
We all need tough love.
Hi, guys, you both know why I spoke in dire tones, don't you? It was not to remove hope, but to try and put some clear "worst case scenario" paramenters down. What is the worst thing that could happen if I do this? Okay, what about that?
Lynn is totally right about this being a livable condition, but it takes action from us to make it so. That action may need to be a decision. I was trying to do the 'tough love" thing that I thought SL was asking for.
Q
Lynn is totally right about this being a livable condition, but it takes action from us to make it so. That action may need to be a decision. I was trying to do the 'tough love" thing that I thought SL was asking for.
Q
I'm on rebif,my neuro never gave me a choice,I was officially DX'd in Dec.2006,if the 3 previous neuro's would of been educated instead of defective I may not have the disabilities I have today.
MS progresses differently in all of us,since being on rebif I have had 2 relapses.Theres no guarentee that the rebif will slow my progression,but I'm still using it.I was a lucky one I never had the flu-like symptoms.
As Quix stated I'm still having a devil of a time and in relapse #3 with a case of ON and nerve pain.But keeping stress free and positive is the battle.
I wear leg braces,but still get around,I work out at a fitness center 5 days a week to keep the muscles active.I can't walk far but I keep moving.
I have days like Quix that I sleep all day,but I take advantage of the days that are good.My life is based on limitations,but theres ways to compensate for them.
7 years ago I had ON and transverse myelititis and was effected for 2 years with symptoms.Symptoms slowly disappeared and returned in Sept.2004.Long time between attacks without medication.If I was put on an inferion then,I may or may not be in the shape I am.
Lots depends where the lesions are,mine are near the brain stem,which effects my entire body.
To reassure you this disease is livable and you can live a productive life.Symptoms can be treated.
MS progresses differently in all of us,since being on rebif I have had 2 relapses.Theres no guarentee that the rebif will slow my progression,but I'm still using it.I was a lucky one I never had the flu-like symptoms.
As Quix stated I'm still having a devil of a time and in relapse #3 with a case of ON and nerve pain.But keeping stress free and positive is the battle.
I wear leg braces,but still get around,I work out at a fitness center 5 days a week to keep the muscles active.I can't walk far but I keep moving.
I have days like Quix that I sleep all day,but I take advantage of the days that are good.My life is based on limitations,but theres ways to compensate for them.
7 years ago I had ON and transverse myelititis and was effected for 2 years with symptoms.Symptoms slowly disappeared and returned in Sept.2004.Long time between attacks without medication.If I was put on an inferion then,I may or may not be in the shape I am.
Lots depends where the lesions are,mine are near the brain stem,which effects my entire body.
To reassure you this disease is livable and you can live a productive life.Symptoms can be treated.
10-4 - Mama-Q - 10-4
I really needed that swack upside my thick skull (really I did).
The no-guarantee is the difficult part for me, combined with the long-term unknown effects on the body with interferon use. We discussed Copaxone as well, which sounded to me that it had repairing possibilities. The downside only seemed to be daily injections. I was surprised to learn that it also alleviated the risk of developing antibodies, and had less side affects. In the end, I left it up to the Dr., since, well, he is the Dr. He chose Rebif.
To briefly respond to some of the questions (my timeline is very far back on the board). My trip to dx, was short compared to others. My problems started in March. Basically, I had problems w/all of my motor skills, speech, eating/swallowing, chewing, walking, horrible fatigue, eyes could not focus on things, nor could I follow them. Like I was drunk and stupid all at the same time. So, between my head and my body, nothing would work properly, I could just go on and on as the list is long. In addition, I had the buzzing in the tailbone, couldn't think, felt like I had just gone plain "dumb". Thought I had a stoke because I couldn't write either. I had sensations that felt like the blood wasn't flowing to my head, which preceeded all the normal body functions that we count on every day. This lasted for a little over 3 months. Slowly the sensations became further inbetween and once that happened, I could function a bit more, week by week I saw some improvements.
At this time, I have many residual issues and new ones, muscle spasms and cramping, weird jumpy nerves (especially in my thumb - it jumps and trembles whenever it likes to), cognitive issues that I'm working through, and a lot of others, however, they are no where near where I was during those months. I still have the L'Hermittes, however, it's changed a bit.
My Dr. was thorough, ran all the tests, ruled out all the mimics, and in the end, it was the LP (positive for olig. banding) results that etched the dx in stone. He's a good Dr., and even though this was his dx, he wanted me to get a 2nd opinion (I would of done it anyway). I did not have to ask for it though. I went to JHH for that and the Neuro there agreed.
Interesting for the forum, my Dr. did discuss future treatments regarding Copaxone and Rebif (if I remember correctly, it seemed that they could combine the 2?? - don't quote me on that one - it was a long visit) and studies in that area where Mt. Sinai and Lublin were mentioned. It sounded promising to me, especially since the Copaxone seems to have a lot to offer re: how it works differently w/the bb barrier, vs. how the interferons work.
Anyway, thank you so much for taking the time to yell at me - lol ...I can't believe you got all that out on the fly.
thanks is not nearly enough,
SL
I really needed that swack upside my thick skull (really I did).
The no-guarantee is the difficult part for me, combined with the long-term unknown effects on the body with interferon use. We discussed Copaxone as well, which sounded to me that it had repairing possibilities. The downside only seemed to be daily injections. I was surprised to learn that it also alleviated the risk of developing antibodies, and had less side affects. In the end, I left it up to the Dr., since, well, he is the Dr. He chose Rebif.
To briefly respond to some of the questions (my timeline is very far back on the board). My trip to dx, was short compared to others. My problems started in March. Basically, I had problems w/all of my motor skills, speech, eating/swallowing, chewing, walking, horrible fatigue, eyes could not focus on things, nor could I follow them. Like I was drunk and stupid all at the same time. So, between my head and my body, nothing would work properly, I could just go on and on as the list is long. In addition, I had the buzzing in the tailbone, couldn't think, felt like I had just gone plain "dumb". Thought I had a stoke because I couldn't write either. I had sensations that felt like the blood wasn't flowing to my head, which preceeded all the normal body functions that we count on every day. This lasted for a little over 3 months. Slowly the sensations became further inbetween and once that happened, I could function a bit more, week by week I saw some improvements.
At this time, I have many residual issues and new ones, muscle spasms and cramping, weird jumpy nerves (especially in my thumb - it jumps and trembles whenever it likes to), cognitive issues that I'm working through, and a lot of others, however, they are no where near where I was during those months. I still have the L'Hermittes, however, it's changed a bit.
My Dr. was thorough, ran all the tests, ruled out all the mimics, and in the end, it was the LP (positive for olig. banding) results that etched the dx in stone. He's a good Dr., and even though this was his dx, he wanted me to get a 2nd opinion (I would of done it anyway). I did not have to ask for it though. I went to JHH for that and the Neuro there agreed.
Interesting for the forum, my Dr. did discuss future treatments regarding Copaxone and Rebif (if I remember correctly, it seemed that they could combine the 2?? - don't quote me on that one - it was a long visit) and studies in that area where Mt. Sinai and Lublin were mentioned. It sounded promising to me, especially since the Copaxone seems to have a lot to offer re: how it works differently w/the bb barrier, vs. how the interferons work.
Anyway, thank you so much for taking the time to yell at me - lol ...I can't believe you got all that out on the fly.
thanks is not nearly enough,
SL
Hello Quix,
read your message above, quite scary prospects you described there....
Since we are on the med discussion,... do you have any info on the new vaccine they are developing? I have read a couple of articles and it seems like the only thing that can save us all,,... it does not reverse the damage, but should stop the desease.
They are into their second phase trials and hopefully after the thrid one I am hoping it will go into production. Being hopeful, hopeful, hopeful.
Take care
Janey1
read your message above, quite scary prospects you described there....
Since we are on the med discussion,... do you have any info on the new vaccine they are developing? I have read a couple of articles and it seems like the only thing that can save us all,,... it does not reverse the damage, but should stop the desease.
They are into their second phase trials and hopefully after the thrid one I am hoping it will go into production. Being hopeful, hopeful, hopeful.
Take care
Janey1
I never do like thinking of you as "slow." ........I have to leave for several hours. I just want you to understand that the Interferons are not immunosuppressants - as many people characterize them to be. You would have a much greater risk of infections, cancers and lymphoma, and such with the meds used for most of the other autoimmune diseases. Rebif is a good choice. If I had to choose again now, I might very well choose it!! And the DAD are kind of a crummy choice becasue they don't really help you feel better and it's hard to know if they are helping, because, would you have gone on to a long remission anyway? So much expensive med for such a long time!
But, you need to remember that no matter what your attitude toward treatment is, MS will continue to wreak havoc whether or not you are symptomatic. One of our members (and I think it was Lynn) had an episode of Optic Neuritis and Transverse Myelitis also called neuromyelitis optica) which was basically ignored for 7 or so years, even though a whole bunch of things eventually cam positive. By the time they "diagnosed" her officially she was already in Secondary Progressive MS and is having a devil of a time. She certainly wishes someone had put two and two together to get her on DAD's when they might have really made a difference.
When I come back I will go over all the awful things (and there aren't many) that the Interferons (which are made by the body anyway) can do. Supressing your immune system isn't really one of them. By adding more interferon-1a into the mix you change the proportion of immune T cells. Another thing you may have heard about is the formulation of Interferon they use in treating Hepatitis C. This is Pegylated Interferon and it has had some potent aftereffects (although dying od liver cancer from Hep C isn't any picnic either.) But that is a very different med.
The interferons and glatimirate have been used for close to 16 years. Their track record is good and several newer meds are in the wings which promise to be more targeted and have less potential for harmful effects. Moving into a progressive phase of MS is a VERY BAD thing. Think increasing pain, paralysis or severe spasticity including speech and swallowing, blindness, and helplessness. Yes, for all MSers only 25% come to that after 20 years, but I still don't like 1 in 4 odds.
I've been on Avonex (much lower dose than Rebif) now for three months. I barely have any side effects now, down from about 16 hours of aching muscles and some stiffness. It was never very bad for me.
I guess it is a matter of putting two unknowns against one another. Will they discover some bad effect of long term interferon use? Maybe, but we know you have at least 16 years, lol. Will MS progress untreated to a state you don't want to experience? 1 in 4 says yes it will.
You've been grappling with this for a couple months now. Life offers us no guarantees on any of it. You've never told us much about the symptoms that led you to diagnosis. Were they very mild? Is it that you don't have a horrific experience to goad you on? (My first symptom was the inability to lift my right foot. That was 3 years ago, and I still can't) Yes, the first five years of your disease is a pretty good (though not guaranteed) indicator of how the MS will treat you. But waiting to see if it will truly turns out that way, leaves you open to damage that you later can't undo. Even if you don't "end up" in a wheelchair you have a 50% chance of needing assistance to walk if left untreated.
And you don't need to start, but the next relapse might be the one that takes your vision, or the control of your bladder. It's sort of like Russian Roulette. Most of the time (5 out of 6) you're going to be okay.
Okay, that was my quickie, stern lecture. Who/what do you want to be in 15-20years?
It's time to make a grown up decision as "burbanchick" said. And it sucketh majorly!!!
We're here for you. Anyone else?
Of course you're nuts. You hang around here don't you? A charter member of Hypo Gamma Chondria?
Quix
But, you need to remember that no matter what your attitude toward treatment is, MS will continue to wreak havoc whether or not you are symptomatic. One of our members (and I think it was Lynn) had an episode of Optic Neuritis and Transverse Myelitis also called neuromyelitis optica) which was basically ignored for 7 or so years, even though a whole bunch of things eventually cam positive. By the time they "diagnosed" her officially she was already in Secondary Progressive MS and is having a devil of a time. She certainly wishes someone had put two and two together to get her on DAD's when they might have really made a difference.
When I come back I will go over all the awful things (and there aren't many) that the Interferons (which are made by the body anyway) can do. Supressing your immune system isn't really one of them. By adding more interferon-1a into the mix you change the proportion of immune T cells. Another thing you may have heard about is the formulation of Interferon they use in treating Hepatitis C. This is Pegylated Interferon and it has had some potent aftereffects (although dying od liver cancer from Hep C isn't any picnic either.) But that is a very different med.
The interferons and glatimirate have been used for close to 16 years. Their track record is good and several newer meds are in the wings which promise to be more targeted and have less potential for harmful effects. Moving into a progressive phase of MS is a VERY BAD thing. Think increasing pain, paralysis or severe spasticity including speech and swallowing, blindness, and helplessness. Yes, for all MSers only 25% come to that after 20 years, but I still don't like 1 in 4 odds.
I've been on Avonex (much lower dose than Rebif) now for three months. I barely have any side effects now, down from about 16 hours of aching muscles and some stiffness. It was never very bad for me.
I guess it is a matter of putting two unknowns against one another. Will they discover some bad effect of long term interferon use? Maybe, but we know you have at least 16 years, lol. Will MS progress untreated to a state you don't want to experience? 1 in 4 says yes it will.
You've been grappling with this for a couple months now. Life offers us no guarantees on any of it. You've never told us much about the symptoms that led you to diagnosis. Were they very mild? Is it that you don't have a horrific experience to goad you on? (My first symptom was the inability to lift my right foot. That was 3 years ago, and I still can't) Yes, the first five years of your disease is a pretty good (though not guaranteed) indicator of how the MS will treat you. But waiting to see if it will truly turns out that way, leaves you open to damage that you later can't undo. Even if you don't "end up" in a wheelchair you have a 50% chance of needing assistance to walk if left untreated.
And you don't need to start, but the next relapse might be the one that takes your vision, or the control of your bladder. It's sort of like Russian Roulette. Most of the time (5 out of 6) you're going to be okay.
Okay, that was my quickie, stern lecture. Who/what do you want to be in 15-20years?
It's time to make a grown up decision as "burbanchick" said. And it sucketh majorly!!!
We're here for you. Anyone else?
Of course you're nuts. You hang around here don't you? A charter member of Hypo Gamma Chondria?
Quix
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