Originally posted by Carolinemf
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Hi all.
Even after reading the quantity of posts that i have read on MS world in little under a year- it still amazes me at the similarities of opinions and experiences in regard to dealing with MS (and sometimes other things as well) This is at times comforting and yet when i read about those newly diagnosed still going threw 'trial n error' in much the same way I did over 30 years ago it can also be very disheartening that things have progressed so little.
A lot of patients don't take meds for a considerable time after presentation any way because it some times takes years to get a conclusive diagnosis.
It took me over 10 years to be diagnosed. Apparently my inability to speak and paralysis was 'all in my head'. This can be fairly typical for RRMS.
After diagnosis I entered a study using Betaferon (Aus, Betaseron US)
I took this for about 4 years. I was terrified not to take something as I had an aunt and uncle who had the most severe type and passed away in their early forties.'Scared to take and scared not to take' big time!!
I decided to quit Betaferon because it's side effects were worse than my ms symptoms.
I was fortunate to be fairly stable for quite a while with mild relapses.
I personally believe that this was mostly due to stabilising my hormones.
So other than the betaferon and one course of steroids (never wanted a second) I made it through about 27 years without other dmds.
Just dealt with each relapse as it occurred and got on with life.
I changed docs 4 n 1/2 yrs ago and he recommended I start Tysabri.
I don't regret starting it, but i am still uncertain if it has helped. I am JC + but titers are reduced.
I'm now about 32yrs past onset and am spms not rrms and experiencing significant brain atrophy and reduced cognitive function.
I am at present weighing up the pros n cons of stepping up treatment to Lemtrada as my doc has recommended so the decisions never end.
The hardest thing is that it is established that the earliest ANY illness gets attention the greater the chance of successfully treating it.
I feel a bit like I may have missed the bus in this regard so am still undecided about whether the POSSIBLE BENEFITS outway the side effects with starting Lemtrada.
How old are You? How long since onset? How disabled? Severest symptoms? Rate of progression?
I am considering these things at present. As I have done in the past.
I think if I were at onset stage and relatively young I would opt for the best med available to me.
As others have indicated some times its easier to not have another thing to organise/worry about and i do find that I still begrudge the lost time, energy, money that i have expended with doc visits taking meds and stress that accompanies 'all of the above'.
It is still an unfortunate reality that those with the most disability and progression from ms and have the most urgent need of meds still have the least options available to them.
There are others with RRMS who can lead virtually a normal life with just a few speed bumps along the way.
I fell some where in between and now my progression has caught up with me.
If I'd been more aggressive with treatments , would I be better now?
Would I be worse now if I had done nothing at all?
Did pushing through regardless of the pain and stubbornly refusing to be beaten help keep me fit enough to recover each attache? Am I progressing more now because I am tired of fighting now?
I have begun researching everything and changed my diet and started taking supplements recently. Should I have done this earlier? Will it help?
These questions have no conclusive answer. Even after all these years its still down to a personal choice and opinions.
All the best
Even after reading the quantity of posts that i have read on MS world in little under a year- it still amazes me at the similarities of opinions and experiences in regard to dealing with MS (and sometimes other things as well) This is at times comforting and yet when i read about those newly diagnosed still going threw 'trial n error' in much the same way I did over 30 years ago it can also be very disheartening that things have progressed so little.
A lot of patients don't take meds for a considerable time after presentation any way because it some times takes years to get a conclusive diagnosis.
It took me over 10 years to be diagnosed. Apparently my inability to speak and paralysis was 'all in my head'. This can be fairly typical for RRMS.
After diagnosis I entered a study using Betaferon (Aus, Betaseron US)
I took this for about 4 years. I was terrified not to take something as I had an aunt and uncle who had the most severe type and passed away in their early forties.'Scared to take and scared not to take' big time!!
I decided to quit Betaferon because it's side effects were worse than my ms symptoms.
I was fortunate to be fairly stable for quite a while with mild relapses.
I personally believe that this was mostly due to stabilising my hormones.
So other than the betaferon and one course of steroids (never wanted a second) I made it through about 27 years without other dmds.
Just dealt with each relapse as it occurred and got on with life.
I changed docs 4 n 1/2 yrs ago and he recommended I start Tysabri.
I don't regret starting it, but i am still uncertain if it has helped. I am JC + but titers are reduced.
I'm now about 32yrs past onset and am spms not rrms and experiencing significant brain atrophy and reduced cognitive function.
I am at present weighing up the pros n cons of stepping up treatment to Lemtrada as my doc has recommended so the decisions never end.
The hardest thing is that it is established that the earliest ANY illness gets attention the greater the chance of successfully treating it.
I feel a bit like I may have missed the bus in this regard so am still undecided about whether the POSSIBLE BENEFITS outway the side effects with starting Lemtrada.
How old are You? How long since onset? How disabled? Severest symptoms? Rate of progression?
I am considering these things at present. As I have done in the past.
I think if I were at onset stage and relatively young I would opt for the best med available to me.
As others have indicated some times its easier to not have another thing to organise/worry about and i do find that I still begrudge the lost time, energy, money that i have expended with doc visits taking meds and stress that accompanies 'all of the above'.
It is still an unfortunate reality that those with the most disability and progression from ms and have the most urgent need of meds still have the least options available to them.
There are others with RRMS who can lead virtually a normal life with just a few speed bumps along the way.
I fell some where in between and now my progression has caught up with me.
If I'd been more aggressive with treatments , would I be better now?
Would I be worse now if I had done nothing at all?
Did pushing through regardless of the pain and stubbornly refusing to be beaten help keep me fit enough to recover each attache? Am I progressing more now because I am tired of fighting now?
I have begun researching everything and changed my diet and started taking supplements recently. Should I have done this earlier? Will it help?
These questions have no conclusive answer. Even after all these years its still down to a personal choice and opinions.
All the best
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