Hi everyone, my name is Angie and i am 48 years old. I was diagnosed with ms last June after 3 years of the doctor’s thinking there was something wrong with my knee. Total shock as no one in my family has it but here we are. Have the nicest ms nurse and my consultant is very good to
Hello, it’s not a fun thing to hear being told you have MS and your mind can run away.
I got told my diagnosis when at university (I am now 51) I still do stuff with the kids, goto work and go on holiday. It’s all very unpredictable and that’s the toughest bit. It sounds like you’re on the right path with a nurse and consultant.
Hi and welcome.
New to MS to I am 57.
Are you on any treatment?
Hi also new to MS - diagnosed aged 53 and total shock. I am a mental health nurse and lived life in the fast lane with work , house and family .
So a bit like the rabbit and the tortoise whereas I was a hare and now I am a tortoise
I’ve got a great ms nurse and consultant and I am researching the treatments with a view to start
The infusion and injection
Ocreavus and ofamumadam
For me im leaning towards the injection as it’s not a big dose all in one go
And once it’s in you can’t get it back out if you have any reaction
Obviously nervous but this needs some element of control over it
Are you on any treatment or being considered for any
Some similarities in my situation with yours. Officially diagnosed Feb’21 with PPMS but misdiagnosed for approx. 8 years previously. Like you, I started with what seemed to be a sports injury in my knee. Because the incorrect diagnosis of lumbar spinal stenosis also involved progression, I never got a head MRI and yet endured the worsening until the operation seemed like a necessity. Yes, it was a shock, going from having something which was thought to be treatable with an operation (albeit a serious one), to finding out that not only was I stuck like it, but that it would continue to get worse. 60 now but still life-changing.
Thankyou for replying James, I am still working to and plan to for as long as i can as I love my job as a care assistant. My consultant thinks I’ve probably had ms for quite a while and am now progressive ms. Just had my 1st Ocrevus treatment which I seem to have tolerated well. Like you say it is very unpredictable and the fatigue is overwhelming at times. Sounds like you are doing the best you can having ms, it is good to be in a group where everyone can offer advice if we need it.
Hi TeddyBear1, thank for the welcome I have just had my 1st infusion (Ocrevus) I will be having one of every 6 months. Also take gabapentin to help with pins and needles and sleep really. It is my right side that i have pins and needles, hand, foot and foot drop:see_no_evil: how about you? How are you managing
Confirmed i had ms in dec 22 but at the same time found i have p anca in my blood so sort of back to limbo again and no treatment. At the moment i am doing very well, have slight sensation change on my face.
Hi Graeme, thank you for replying. Your situation sounds very similar, my symptoms started 6/7years ago with tingling in my right hand. Doctor gave me ibuprofen gel and sent me away saying they couldn’t do a great deal unless it got worse. 3 years ago started having a problem with my knee, steroid injections and mri scans didn’t show anything so was sent to see an orthopaedic consultant. He was the same, nothing wrong with my knee. I was insistent by this time that something was wrong as my walking was shocking so he made me walk down the corridor so he could see for himself. He said I needed an urgent brain and spinal scan, he was disgusted I had been left like this for so long and no one had noticed it. Total shock but I knew something was wrong and here I am. One day at a time and don’t look to much into the future. Really happy to be on this forum, a bit of comfort knowing I’m not alone on this journey. Take care, Angie
More similarities, Angie!
In fact it was my osteopath (not orthopaedic) who recognised my “neurological gait” and stated that it couldn’t possibly be coming from my back & hips and the lumbar spinal stenosis that had previously been diagnosed. I’d had several MRI’s over the years but incredibly, always the spine and never the head. My own fault in some ways as, to be helpful, I told whichever Doctor I met that I had Spinal Stenosis - so they stopped investigating on their own account.
Took the suggestion from the osteopath back to neurosurgeon (who was considering a back op…) and he ordered a head MRI, sharpish!
My philosophy is to live neither in the past nor future, but to live for today. I see myself as somewhat fortunate to have made it to 54 before my life got impaired and I had to give up my beloved sport. My PPMS has been pretty aggressive since, but I’d had my best years doing the things I loved, have my memories and still the appreciation when watching a great game of tennis or rugby because I know how those shots or moves felt.
It must be a very different mindset for those being diagnosed in their 20’s with their lives ahead of them, but new DMT’s which for many can stop relapses & progression, they still have some choice.
Yeah, it’s shit, but we’re not alone
I was diagnosed at the end of last year (54), after 9 years of Neuro visits and testing. Not a surprise as 2 members of my family (Brother and Niece) have MS. Doesn’t get in my way too much, still work, do Taekwon-do, gardening, pets, travelling etc. Just have to pace yourself.