What a shocker. I had a FUNNY TURN on monday night couldnt remember where i was anyway ended up in A&E.
NO STROKE.
My leg lately has been playing me up a lot so they decided to do a full spinal MRI. Just had the results which kind of shocked me. I have had MS since 2015. They found ACTIVE LESION ON MY SPINE.
I have now been assigned to MS nurse every 3 months in a form of palliative care.
Has this happened to anyone else. If so did you decline quicker how did it affect you?
Thanks.
Hi CC
I am so sorry for what you are going through at the moment.
Hope the MS nurse looking after you helps.
Take care
Pam x
Thank you Pam. I was told they were going to give me steriods, but my MS doctor told me several years ago they dont work for PPMS. so a bit confused lol.
Hi Crazy Chick,
Gosh so sorry to hear about this, that must have been scary, I really hope you get all the help and support you need.
Sorry I can’t help, just wanted to support you, take care of yourself.
Jean x
Like you CC I have always thought steroids were not given for progressive as they did not work, but if they think they will help might be worth a try.
Take care
Pam x
ALTHOUGH not sure the side effects warrant it lol.
Hasn’t happened to me so far as I know ———- but years ago and before MS diagnosis I did have a ‘funny turn’. Just suddenly collapsed , off to the local hospital where they did find a ‘tiny infarction’. Years later my GP wondered if the collapse was something to do with MS. Her husband and son both had MS so she had developed some knowledge and experience of the condition. I will never know if it was a result of MS.
It’s not often talked about but my MS Nurse told me that with both Primary and Secondary MS you can still get some lesions and relapses. Stuff about this in the literature as well. So steroids would be a good idea.
I am very sorry you are going through this just now.
I have not experienced this before but please know I’m thinking of you and hopefully things settle a bit and you can learn to adapt to this new chapter which I am sure you will as you are such a strong person, always there for others
Much love
Maryx
i am ok honestly. i would never known i had it if i hadnt gone into hospital for another reason. they only did the full spinal MRI as they were worried i may have fractured something or damaged a bone.
thank you for your lovely message. xxx
Take care Crazy Chick, always herexx
SPOKE to my MS today. she is querying who would have sanctioned the 500mg steroids, knowing i had PPMS as it would do nothing or very little, and the risks of the stuff far out way the benefits, (I have high BP), SO she told me do not take them. also sent me a letter with that regard and a copy to the doctor. i knew i was right about it. they are not usually offered to PPMS as we dont get standard relapses. like you i have been dealing with it a long time. Probably know more then a lot of doctors. she is questioning that a member of their team would do that.
so i am glad i decided not to take it. i will get over it, the pain is bad but well i am used to it anyway lol. xxxx hope you are ok hun. xxx love CC.
Hi CC
I thought we were right saying you don’t have them for PP and I am so glad you checked, although you shouldn’t have to.
Stay strong CC hope it eases for you soon.
Take care
Pam x
Hi Crazy Chick, Really glad you got this checked out, honestly the harm it could have done doesn’t even bear thinking about.
I’m SPMS, without relapses and the same applies to me, my MS nurse told me many moons ago that steroids would do me no good. You’re also right about us knowing more than some professionals, my own GP has said as much, she told me she’s learned so much from me over the years.
Take care of yourself, stay safe, warm and strong.
Jean x
funny enough my MS doctor told me that. when i saw him 2007 there was hardly anything known about PPMS in the UK and over the years he knew the issue, but the criteria for diagnosis didnt allow him to do so, until he did one more VEP test and it showed positive and worsening for O.N., then he could. Its rare in the UK only about 1500 of us have it to over 100,000 of RRMS. People try to make me feel i was just acting up and not ill at all. But suddenly i am vindicated with new lesions. its like being told i have cancer. I know stupid, but i get fed up of people treating me like i am not ill. I WORK hard to stay active just a bit in the house, its hard work, i wont give up as i have an older dog rescue he is nearly 15 the one before was bella she came to me at 15 and sadly i lost her when she 17. but she kept me moving forward.
we have MS just got to get on with it, and make the best life we can for ourselves. I told my MS nurse us oldies should be used as mentors to help newbies on their journeys as we know what we are talking about lol. xxxxxxx have a good weekend all of you and stay safe. xx Blue my little rescue boy he was about to be destroyed in pound. BEST THEREPY EVER.
Hi CC
It is really hard when people don’t understand what it’s like, but in fairness to them, we understand because we have It.
Stay strong and just do what you can when you can, you know your friends on here are all behind you.
I love your little furry companion, I had one the same, but unfortunately Alfie went over the rainbow bridge almost 3 years ago.
Take care
Pam x
Oh Crazy chick, isn’t he lovely and you’re right, best therapy ever. We have a little Lhasa Apso, Minnie, she’s 10 now, we’ve had her since she was 8wks, she’s lovely and keeps us going.
Take good care and keep smiling.
Jean x
