Hi Everyone,
Wanted to pick the brains of other SPMS'ers . have read many posts about SP but haven't found any that quite cover my ?'s.
My main problems with SP over the last few years is Brain atrophy and cognition problems.
This was very worrying for me- have felt like i'm losing the plot- but have slowly come to terms with this and was ,hopefully, looking forward , to trying one of the new treatments when available , like Ocrevus, to slow progression.
But over the last year i have been experiencing increased pain -mostly nerve- and this is a new worry I would like to compare notes with others with.
All the info on SPMS that I have read says that the progression that occurrs, is worsening of damage previously done, when we had attaches when we were RRMS.
My very first 'major/noticeable' attach was when i was completely paralysed for a couple of weeks and then slowly recovered , though i had a lot of weakness and extreme pain in my back, neck and hips for a long time(years) after.
It was later (years) that a spine MRI detected a large (old) lesion on the brain stem.
I now believe this is what caused my initial problems.
My next most severe attache involved complete loss of speech.
There were other less severe attaches of course but these 2 were the most debilitating.
My query is - has any one backtracked their attaches and damage and has it been their experience that the symptoms and damaged areas that they remember occurring are the same ones that are causing them problems now?
IE- can my increased back, neck and hip pain and increased nerve sensations that are beginning to bother me now, be attributed to the worsening of the damage done in my brain stem 30yrs ago.
I appreciate any and all feed back from those dealing with SPMS who can look back and compare the issues they are having now and compare them to the ones they had previously..
If I'm going to 'redo' the things I did in the past -And it's not going to remit anymore- I don't think i can cope with not being able to talk- hubby might think it's great - but to me - thats END GAME.
Caroline.
Wanted to pick the brains of other SPMS'ers . have read many posts about SP but haven't found any that quite cover my ?'s.
My main problems with SP over the last few years is Brain atrophy and cognition problems.
This was very worrying for me- have felt like i'm losing the plot- but have slowly come to terms with this and was ,hopefully, looking forward , to trying one of the new treatments when available , like Ocrevus, to slow progression.
But over the last year i have been experiencing increased pain -mostly nerve- and this is a new worry I would like to compare notes with others with.
All the info on SPMS that I have read says that the progression that occurrs, is worsening of damage previously done, when we had attaches when we were RRMS.
My very first 'major/noticeable' attach was when i was completely paralysed for a couple of weeks and then slowly recovered , though i had a lot of weakness and extreme pain in my back, neck and hips for a long time(years) after.
It was later (years) that a spine MRI detected a large (old) lesion on the brain stem.
I now believe this is what caused my initial problems.
My next most severe attache involved complete loss of speech.
There were other less severe attaches of course but these 2 were the most debilitating.
My query is - has any one backtracked their attaches and damage and has it been their experience that the symptoms and damaged areas that they remember occurring are the same ones that are causing them problems now?
IE- can my increased back, neck and hip pain and increased nerve sensations that are beginning to bother me now, be attributed to the worsening of the damage done in my brain stem 30yrs ago.
I appreciate any and all feed back from those dealing with SPMS who can look back and compare the issues they are having now and compare them to the ones they had previously..
If I'm going to 'redo' the things I did in the past -And it's not going to remit anymore- I don't think i can cope with not being able to talk- hubby might think it's great - but to me - thats END GAME.
Caroline.
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