Hi Everyone,
Saw my neuro today and got more than what I expected. I believed I have RRMS but she now informs me that it is SPMS.
I’m still shaking from the dx, but will have to get on with it, that I know, but it’s still a bit scary.
A few words of comfort wold go a long way right now. Husband brilliant about it, but as I say I’m exhausted and scared.
Janet
x
Hiya Janet
Firstly hugs to you.
May I suggest that you are the same person today that you were yesterday and hope you get some comfort from that. Whilst I appreciate that ‘labels’ are important for treatments and some other stuff the bottom line is that you are still dealing with what you have to on a daily basis. I say that in the hope that it helps u realise that its a new ‘label’ that you have but you are still the same person-the new label hasnt changed you and your determination.
Secondly-hugs to hubby (I dont have one-but I know how supportive some of them are) and sometimes the total focus is on the person with MS and those close flounder a bit.
Give it a ‘while’ and you will get your head round it-of that I am sure strong lady
Ellie x
I too have been given a recent diagnosis of Secondary Progressive.
The sky hasn’t fallen on my head, I haven’t suddenly lost all my faculties - what I am trying to say to you “it is only a label”
Sending you {{{hugs}}}
Hi Janet, please dont despair, its only a label,that the neuros use, you are still the same person you were , before you were told you have spms, i sort of already knew, that i had progressed to spms, after a massive brain stem relapse in 2005 i sort of never recoverd from,so when my neuro mentioned he thought i was now spms, it wasnt such a shock,i just thought to myself,‘oh well, i already knew’
((((hugs)))
jaki xx
Hello Janet,
I can only echo everyone else. I have had MS for 25+ years, and as things are getting more freaky, I had assumed that I was now a member of the S.P. club. I saw my con. neuro. a couple of weeks ago and he announced that I was still RR - that’s news to me. But either way, we are all in the same stew pot, and nothing remarkable will happen whichever one we have. Take care & relax.
Best Wishes,
Moira
Hi Ellie,
Huge hug to you and to your husband, sorry to hear about the diagnosis - sure it will take you a
while to get your head round it.
Try and give yourself a little treat tonight - wine or chocolate - just to keep your
spirits up.
Keep strong and we’re all here to support you.
Jen xxx
Hi Jen
Have passed your hug onto Janet!
Its come to me as a HUGE shock that I have a hubby! LOL
Ellie x
Oh Janet, it must have been a shock to you, expecting to be RRMS and been given SPMS.
It basically means youve had RRMS for ages, and have gone into SPMS. I send you loads of (((((((((((((((((((((((((hugs))))))))))))))))))))) send luv & support. You know we shall try guide and help you as much as we can and share our experiences - we each are given type, yet there is a common theme, we all suffer ms.
One note - I have lots of friends who suffer SPMS and theyre doing just fine. I know it wont help as yet, but once the diagnosis has sunk in you will realise most msers plod on and gain support on here, knowing theyre not alone. Together we are strong.
Take care,
bren
x
Hi Janet, so sorry about your dx that must have been such a shock. I suppose in a positive way you know now what you are dealing with. Sending kind thoughts and hugs your way. Karen xx
The Neurotic has said this so she has something to write down. At £120,00 ish she has to show her bosses that ‘she’s doin’ a bit’. You still have your own version of MS, and only you truly understand it.
She will now open the ‘next sweetie cupboard’, but unless you are fortunate there will be nothing in her cupboard that will drastically change your life.I donot know what effect if any your title bump will have on the DWP,if indeed you are a customer of theirs,but it may ‘sweeten the deal’.
I don’t know if these are words of comfort,but praps they give you a bit of context,
Good luck, Wb
Hi Janet
My diagnosis came straight in with SPMS and it was quite a shock. It does take some getting your head around. However as others have said you are still the same person today as you were yesterday.
There are some advantages to having SPMS. For me it doesn’t wildly fluctuate from day to day, I wake up more or less the same as I went to bed.
It’s important to remember that SPMS is as unpredictable as any other form of MS and there is no inevitability with it. The rate of the progression varies and is not predetermined and it is perfectly possible that your MS might plateau so don’t assume the worst.
Potential treatments for SPMS are also being developed e.g. Tysabri is being trialed for SPMSers and a new drug, Fampridine, is being introduced to help with mobility problems.
Be gentle with yourself and give yourself time to come to terms with your diagnosis. With time you will realise that life goes on, differently to before MS but it does go on
Good Luck!
Anne x
Hi Janet,
Not sure what to say to you,but when it has sunk in you will see that it is just an name.[sticks and stones can break my bones but words can never hurt me]
When i was diagnosed with SPMS i was not suprissed,in fact it was me that told the Nuro before he told me.
As other people have giving you sound advice all i can do is send you a warm cuddle.[hope hubby is ok with that]
Take Care.
Chris.
Hello to all you lovely, lovely people,
Your kind words and advice have helped ease the shock along with all the hugs. (No Chris he’s fine with you giving me a warm cuddle, thank you.)
As you all so rightly say it is only a label and one I’ve got to live with, but it won’t beat me down I’ll fight the whole time.
Oh and Ellie, thanks for passing the hug from Jen onto me.
You all take care and thanks again (it made me want to cry reading your posts) but then I’m a softie.
Janet
x
For all of us with SPMS…
The next MS Trust chatroom is tomorrow (16th May) and is about managine the transition to SPMS
If you can’t spend all day sitting at the computer - I for one can’t concentrate anywhere near the 3 hours each session takes - a transcript is always available sometime after the chatrooms. I joined in a chatroom about fatigue just before I finally ‘gave in’ and went off sick. It was an eye opener, and helped me realise what had been obvious to everyone around me. I was really fighting hard to cope, and that chat made me realise that no one could cope with what was happening to me. I was just being too strong for my own good.
See you there maybe? If my home broadband stays ‘awake’ too!
http://www.mstrust.org.uk/interactive/chatrooms/
Understanding and coping with the change from relapsing remitting to secondary progressive MS can be challenging. With fewer relapses and disability gradually increasing, approaches to treatment and managing symptoms can change. For some people this can feel like being diagnosed a second time with a new range of unknowns and uncertainties.
On 16 May, the next chatroom will explore this topic and offer the chance to ask questions of health professionals or to share thoughts with other people with MS.
Morning session - 10am-1pm
Afternoon session - 1pm-4pm
Evening session - 4pm-7pm
There is no need to register and information on how to join the chatroom will be posted on this page on the day of the session.
If you are unable to make it to the chatroom on the day, you can send your questions or comments in advance to info@mstrust.org.uk
To receive an email reminder about upcoming chatroom sessions, email info@mstrust.org.uk
More (((((hugs))))) Janet. Karen x
Even more ((((((((((((((((hugs)))))))))))))))))))) Janet.
Teresa. x
Hi Janet
Sorry you are feeling frightened. I have also been given that ‘label’ and was rather alarmed at the time. I am still the person I was before that dx and know many people older than me who are SP and have kept well by managing their symptoms.
Take care
Love Wendyxx
Thanks, EllenC for the information.
And more thanks to Karen, Teresa and Wendy, it means a lot to know you’re all out there for me.
I feel better about it today as had long chat to OH and agreed that whatever comes we’ll deal with it together.
Thanks once again.
Luv Janet
x