Hi Everyone so nice to join in and chat to people from all over with different experiences and stories of their own MS.
So I had suffered with Bells Palsy just 7days after I gave birth to my son in 1992
Over the years I had different symptoms and problems I underwent a lot of tests including a lumber puncher that led me to having a diagnosis of RRMS.
So again over the years I have had optic neuritis, numbness, fatigue you name it I’ve suffered !
I have today visited my specialist who has told me I have a frontal benign brain tumour and it has been there since 2010, well to say I was shocked is an understatement as I’ve never been told about it being present before.
Because of my symptoms I am experiencing at the moment (memory loss, short concentration, dizziness and balance issues) he has suggested after 18years of having this disease I could be moving onto the next stage, which I think he called it progressive MS ??
Has anybody else had a similar prognosis before ?? If so how have you coped, carried on ?
I’m currently on 28tablets a day and inject 3 times a week with Copaxone xx
Other than that I’m ok, sitting in my garden enjoying the sun xx
Hi Emmie1 . In short no I haven’t but it’s a possibility that’s always in the back of my mind. I can’t remember the precise figures other than apparently most people will go one to experience Secondary Progressive MS - sort of defined as when your symptoms continue to get worse even when you have no new relapses.
Personally- but I’m absolutely not an expert (!) I don’t think there is any real difference between Relapsing Remitting and Secondary Progressive. With Secondary Progressive you can still get relapses ( new lesions and damage to brain and spinal cord) plus old lesions just experience what i think of as wear and tear plus ageing which all makes the existing symptoms a bit worse.
The MS Trust website has a good section on progressive MS.
Knowing that it might come to me at some time I do everything I can to try and keep my brain ‘healthy’. Could be sheer bonkers but i try to eat a brain nourishing diet ( Overcoming MS website has a good section on this); stay active including aerobic, weight bearing exercise, and e.g balance exercises; get enough sleep and not to get stressed ( bad for inflammation !). On the topic of ‘inflammation’ I try to eat anti inflammatory foods ( get through e.g a fair amount of turmeric).
I know I’m possibly whistling in the wind but I sort of reason that if I support my brain it will be better able to repair itself and to build new ‘neural pathways’ as and when existing pathways become damaged .