Good evening I was diagnoised with MS on friday. He says im between remitting relapse ms and secondary progressive MS. This is so confusing as i dont understand what this is ? He gave me a booklet been diagnoised with ms but it doesnt have much info. I had been seeing my gp for over 2 years because i have lost feeling in my hands. One even told me i was making it up. Thankfully i went to see different gp who referred me as emergency to neuro. So within 6 weeks ive been refered met neuro consultant had mri and last week was called in to go see him. Then got the results. Lesions on brain and shadowing on spinal cord. And going by my family history ( mother and great aunt both have and had MS) he then confirmed was MS. Im worried scared etc as ive seen what this disease does. My great aunt was bed ridden till she died. Hes refered me to ms nurse physio and occupational therapy. I have no idea what im doing ? I cant keep a job down as it exhaused me just working an hour and im not lazy ( everyone thought i was ) just so tired and legs like lead. Has anyone please got any info regarding the stages he suspects as ive no idea what all this means for my future Thank you Sorry was long winded
most people are first diagnosed with rrms - relapses then remission.
this can become secondary progressive.
how is your mum at the moment (my question mark key doesn’t work)
your great aunt’s experience doesn’t mean that you will be the same.
my maternal aunt was very badly affected but so far i’m still shuffling on.
you should see if Access to Work can help you - they can give your employers advice on how to help you.
they can also provide taxis to and from work which makes the working day shorter.
don’t get hung up on the label - they are all ms (whoopee!)
maybe try to get help with individual symptoms - eg bowel and bladder clinic for the obvious problems.
my 2nd year with ms was spent mostly on symptom management.
this website has leaflets that you can send for.
i got the Relapsing Remitting MS (RRMS) one which gave clear info with little diagrams.
they also a Secondary Progressive MS (SPMS) one so you could send for both.
you are obviously in a gloomy phase (rightly so) but please don’t stay there long.
mindfulness meditation has a lot to offer, i learned the Breathworks Mindfulness for Pain Relief one and it is brilliant.
when you see the neuro physio they will be able to suggest ways to help with your heavy legs.
i hope i haven’t bamboozled you with too much info.
chin up, be strong, you can get through this pile of crap.
Thank you so much for your reply Carole. Was a lot too take in. I’m taking things in researching and taking day at a time. I’ll definitely look upon those leaflets you mentioned. My mum is good very able despite needing a knee replacement which they won’t do as she’s too young
I am too new to all this to be able to say anything useful, I just wanted to send virtual hugs
It must be very frightening, having seen the worst case scenario of your great aunt. As Carole said, most people start out with RRMS which can them become progressive. The MS Trust has a load of information available such as this: https://www.mstrust.org.uk/a-z/types-ms which explains the different types of MS.
It’s quite likely that the neurologist will be fairly conservative in diagnosis, in order to get you onto a disease modifying drug (DMD), to try to reduce number and severity of relapses. It’s only if they have definitive evidence that you are progressive that they will state you are.
It sounds like you have been utterly poleaxe by fatigue, so this might be useful for you: https://www.mstrust.org.uk/a-z/fatigue
I should think the next step will be for you to be referred to an MS nurse who can then discuss the next steps for you, in terms of what other help you might need and options for DMDs. If you haven’t heard anything by a couple of weeks into the new year, then try phoning the neurologists secretary and ask for the contact details yourself.
Try to put the experience of your great aunt out of your mind. Things have moved on a lot these days, so it’s unlikey you’ll end up in a similar state.
And try to forget about it and have a good Christmas.