Had me MS Nurse today 2nd apt and alot of questions in my mind answered its RRMS & cr$^%piness is part of it & i came away happier and understood a little more no drug changes apart from possibly clonazepam to replace the diazepam & the pain clinic Dr will decide on pain relief , mentally due to therapist & mertazepines im in a strong place so now ive gotta learn my limits & im getting a new neurologist so i am chalking today up as a positive day & ive volunteered for blood bikes (induction on Monday ) delivering urgent blood & organs as well as the disabled bikers charity so hopefully that will fill my time & help others in need for as long as i can be of use at least now i know i can adapt & learn to live with it rather than fighting against it
well done for volunteering for blood bikes!
glad you are feeling better about things
I thought/hoped it was RRMS, and that the general crppiness was all part of it, and not proof it’s progressive. "General crppiness" has certainly been a feature of my experience, even though I’m mostly in remission - or anyway, that’s the theory.
I think sometimes it’s not well explained that RRMS doesn’t always mean feeling fine between times, and that residual symptoms are common. People expect they should feel perfect when not relapsing, but it’s often not like that.
I know it’s late, but it took me ages to work out about the blood bikes, and what they are. I was completely unable to comprehend it at first - it sounds like some kind of torture device: a blood bike? Aaaarrrgggh!
I use diazepam as well, and have just recently taken tonight’s dose - you’ll know it can make things a little slower to trickle through to the brain cells.
I’m going: “Blood bike? Blood bike? Nah, does not compute.” Then the light began to dawn. Good for you!
ty carole x ha ha ha Anitra when i take mine the worlds a fantastic place but i struggle to remember my name so i know where your coming from they are going to change mine to Clonazepam ( i don’t know how good it will be) i know have a new consultant fantastic folks at PALS 11am i request 12.30 my wife gets a call saying to tell me consultant A has agreed and immediately transferred me to my new 1 without question hesitation all within 30 mins (i think i may have been right in my assumptions & hope the next person like me will ring a bell in his memory , i also though i think im gonna be a zombie for a few days made the 80 mile ride to the Merlin Centre today & got apt for physiotherapy booked & a try at the oxygen but not in the chamber as just looking through the window gave me a lifeboat flashback & the nightmare images & flashbacks have stopped thanks to my head lady & i don’t wanna risk any triggers in that dept , so all in all ive had a good 2 days & finally talked face to face with a fellow sufferer so now gonna drag my cracking & stiff limbs up the stairs for sleep i hope everyone has a quiet night & Anitra thanks again you’ve been a rock.x