Have felt like confused little old lady for years now- getting worse probably daily now.
On Tysabri 5yrs.
Had dr apt early June and he has said i have significant Brain atrophy showing on my mri's especially over the last 18 months and this is causing aged dementia like symptoms.
Scared the crap out of me! have been raising my memory/cog problems with dr's for ages but no one seemed overly concerned about it (but me) now it's been recommended to me that i step up treatment to Lemtrada to reduce the inflammation associated with brain atrophy and hopefully lessen future symptoms.
Never had Brain atrophy mentioned before.
Had MS for over 30 years and many mri's.
Just kept hearing 'no new lesions', only small changes' or 'no change' in mri.
Apparently (Dr said) they are paying more attention to brain atrophy now than in the past as a contributor of ms symptoms. Has any one else heard this?
Lemtrada is a third line drug and has serious side effects so I'm looking very carefully into all aspects.
Another thing that i have raised constantly with Dr's over the years is how hormone stabilisation has also stabilised my symptoms and vice versa.
I am either going through or passed through menopause at this time (waiting on blood tests,had hysterectomy) so once again have raised the possibility that this could have been a catalyst to progression.
Told again- only 'known' catalyst is pregnancy.
HRT specialist explained to me that some women (without ms) experience dementia like symptoms and this can be helped with HRT .
While this won't do anything for the atrophy i feel it's worth a look as it may be two things contributing to my memory issues not just the atrophy.
I have a post with queries and more info in the Medications- Lemtrada board, sorry but can't remember enough to post all here. But feel is relevant to both topics.
Would appreciate any feedback. Am feeling pretty overwhelmed at present.
Have had my concerns fobbed of so often and for so long that to have a cause (or possibly 2)of them sudden confirmed and then told that serious attention and treatment needs to be given asap to slow down has been quite distressing- like the runaround most of us experience with ms diagnosis all over again!
Have others had much experience with Brain atrophy? Treatments for it?
Has anyone experienced worsening of cog fog or other symptoms with hormonal fluctuations?
Was any relief experienced by moderating hormonal levels in any way?
Has anyone been specifically prescribed a treatment for atrophy and memory loss etc and not ms in general?
Thanks n all the best.
** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
On Tysabri 5yrs.
Had dr apt early June and he has said i have significant Brain atrophy showing on my mri's especially over the last 18 months and this is causing aged dementia like symptoms.
Scared the crap out of me! have been raising my memory/cog problems with dr's for ages but no one seemed overly concerned about it (but me) now it's been recommended to me that i step up treatment to Lemtrada to reduce the inflammation associated with brain atrophy and hopefully lessen future symptoms.
Never had Brain atrophy mentioned before.
Had MS for over 30 years and many mri's.
Just kept hearing 'no new lesions', only small changes' or 'no change' in mri.
Apparently (Dr said) they are paying more attention to brain atrophy now than in the past as a contributor of ms symptoms. Has any one else heard this?
Lemtrada is a third line drug and has serious side effects so I'm looking very carefully into all aspects.
Another thing that i have raised constantly with Dr's over the years is how hormone stabilisation has also stabilised my symptoms and vice versa.
I am either going through or passed through menopause at this time (waiting on blood tests,had hysterectomy) so once again have raised the possibility that this could have been a catalyst to progression.
Told again- only 'known' catalyst is pregnancy.
HRT specialist explained to me that some women (without ms) experience dementia like symptoms and this can be helped with HRT .
While this won't do anything for the atrophy i feel it's worth a look as it may be two things contributing to my memory issues not just the atrophy.
I have a post with queries and more info in the Medications- Lemtrada board, sorry but can't remember enough to post all here. But feel is relevant to both topics.
Would appreciate any feedback. Am feeling pretty overwhelmed at present.
Have had my concerns fobbed of so often and for so long that to have a cause (or possibly 2)of them sudden confirmed and then told that serious attention and treatment needs to be given asap to slow down has been quite distressing- like the runaround most of us experience with ms diagnosis all over again!
Have others had much experience with Brain atrophy? Treatments for it?
Has anyone experienced worsening of cog fog or other symptoms with hormonal fluctuations?
Was any relief experienced by moderating hormonal levels in any way?
Has anyone been specifically prescribed a treatment for atrophy and memory loss etc and not ms in general?
Thanks n all the best.
** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
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