Hi everyone! Don’t want to be a melodramatic nuisance or anything, because I am all too aware there are folks here so much worse off than me, but I wondered if it’s just me??? … this week I was extremely perturbed by my inability to fit on that hard MRI slab-thingy with me head inside that hannibal-lecter cage. I didn’t know I am unable to lie flat until I wasted my chance at this second scan and subsequent treatment by not lying flat. My mattress and pillow never revealed this to me! I knew I was stooping and looking a bit hunch-backed and I have brought up a loss in height and stooping with 2 neurologists and my MS Nurse over 2 years now but could barely get an acknowledgement beyond platitudes about getting older! So now i’m too bent to fit in the scanner at 11 stone something and wasted the time of two overworked, harrassed looking operators that probably wondered why the heck i’d been sent for a scan in a 60cm tube, given that my chin will stoon start scraping the pavement!
I’m wondering whether I should have started with a DMD when i was diagnosed in 2008, and have been on a grand odyssey now of 11 months and over 300 miles pursuing Tecfidera from my local NHS. I’m beginning to lose faith that there’s anything in their medicine cupboard that can help much anyway, and £17,500 pa for a victorian era anti-fungal chemical doesnt sound like very good value - its way more than my income! What I have after all my waiting and anxiety so far is another unwelcome progression milestone and a biogen brochure that looks like a stripy deck chair!
I would love to know:
How long have you waited for DMDs once they have been approved by your Neuro?
Is it absolutely necessary to have another baseline MRI before starting Tecfidera?
Has anyone else been too deformed for an MRI scan ever? What did they do about it? did you get a scan eventually?
Sometimes I wonder whether being in the NHS system lends itself to heightened anxieties as you inevitable end up concentrating more on your predicament rather than enjoying what you have left.
Has anyone experienced any of this?
Grateful thanks for any replies!