Just got back from my appointment with my Neuro and sat and cried a river. Just been told that I am now Secondary Progressive. I was partly expecting it but I felt so numb and shocked I omitted to ask what the future holds been SP. One thing for sure I will not let this disease beat me, I will just learn to manage it better than I did before. feel so sad right now and can’t get hold of a soul to talk to.
The whole notion of SPMS is totally flawed. No one knows how things are going to pan out in the future - not even the neuros! Some body parts may improve, some may deteriorate, some may stay the same. I have a right leg which is gradually weakening but the left leg at the present time is getting steadily stronger. The point is that at any one time we are a mixture of RRMS and SPMS.
It was far simpler when we were regarded as having M.S. with none of these inaccurate sub categories.
Hi Bambi 19, I really feel for you. I was exactly the same when my neuro gave me the same news on January 9. I have mobilty problems and can only take a few steps with crutches otherwise rely on a wheelchair. Also over the last few months the grip in both my hands has gradually got worse so find it difficult to grip anything. The worse thing for me at the moment is I use to self catheterise but because of grip problems can no longer do it. I have now got a permanent catheter which I hate and is making me depressed but my neuro told me when I saw him on the 9th that he was going to arrange for me to have a supra-pubic catheter fitted in my stomach urgently. I had the appointment through last week for April 3. So much for urgent.
You are never without somebody to talk to…whether its bit by bit,or sobbing out a written river,we are always here for you.
Be kind to yourself.
Sorry for your news but you are still the person you were yesterday, that hasn’t changed. I am PPMS so I understand how you feel. It isn’t the end of the world and doesn’t mean that you have to do anything differently than you are atm. You will get your head around this and move on. Take things slowly and lean on your loved ones! Thinking of you, Teresa xx
l was diagnosed with SPMS - 30yrs ago. lt all started when l became pregnant with my daughter. lt seems l never had RRMS - just went straightaway into secondary progressive. l have never had ‘remission’ - so it seems strange to me to read posts from people who are saying they ‘relapsing’ or ‘remitting’. l just had to get on with it. l was self-employed - so still tried to keep working - then l had my baby - and she became the centre of my world - along with all of my other loves - dogs/cats/horses.
lt has been a struggle - but l am still here - l have difficulty walking -the usual bowel/bladder incontinence - but l know l still probably get more out of my life then many folk who have no illness/disease - l try to keep on the move as l know sitting down for more then a few minutes means l have great difficulty to get going again.
l do take high dose vitd3/vitb12 - and LDN [which l think is amazing] and l take Sativex for muscle spasms. l am very wary of taking any meds that have nasty side-effects. And l have tried quite a few.
ln the last 12months l have lost three close friends who have died - 2 of cancer and one of MSA [type of Parkinsons] - so in many ways l count myself lucky. Two of these friends were ill only for a matter of weeks - so quite a shock for us all.
Dear Bambi,a bit of a day ,but you said it right,“I will not let this disease beat me”.Today will pass and then you will get on with your life and your version of MS.Whatever they may call it,you are the world’s leading expert on it, and with your great attitude you’ll keep modifying and adapting so as to manage it in the best possible way.
I have posted on the PP area asking how the neuros decide who has progressive MS. It always seems arbitrary to me but maybe there’s something I don’t know. Is it possible to argue with a neuro about what you are? Has anyone ever done that and changed a neuro’s mind?
Sewingchick Secondary progressive MS is characterised by a worsening of disability, rather than by relapses followed by recovery. Some people may experience relapses (relapsing secondary progressive MS), but people with secondary progressive MS dont tend to recover completely from a relapse. I didn’t feel a need to argue with my Neuro she has known me long enough to see that it has progressed from R/R to SP. Stenovski, Nanny McPhee, Pip, Teresa, Campion & WB thanks I’ve taken on board all your comments and I know I will get my head around it eventually just not the kind of news you want to hear as I’m sure many others don’t either. I won’t let it beat me I have it, it dosen’t have me! Sue xx
Hi Sue, I too was told I had SPMS about 2yrs ago, since then I’ve been up and down emotionally, then a few weeks ago I turned a corner, got back my more positive attitude and I’m enjoying get on with my life, I was always trying to fight it, now I work with it and I know this might sound silly, but I embrace it, I can’t hate it as that would be hating me and I don’t, I’ve joined the gym, only for the swimming but I try to go twice a week, go out when ever I can, make sure I rest and just try to carry on, I’m in my fifties, dx’d aged 47yrs and I just feel that hopefully I’ve got a good long life ahead of me and I’m going to make the most of it come what may, so although this is a blow and yes a big blow, I wish you lots of luck and plenty of good times, take good care, Luv Jean x
How are you feeling today?
Have you had a proper chat to anyone yet?
Thinking of you
Hi Pip I’m feeling okay a bit tired from the crying yesterday and having a late night, but grabbed a couple of extra hrs once the kids had gone this morning. Looking forward to my husband coming home at the w/e he’s the main one I talk to about my MS he’s good at putting things into prespective and advising me what to do and that’s mainly not doing too much that will make my symptoms worse. I love this forum & the people on it. Always there with good advice and words of encouagement to lift your spirits. Sue xx Jean, Thank you & you too xx
Glad you have got hubbys return to look forward to.
Thanks Pip will do, you too xx
Glad it’s time for hubby to return again Sue. You really need him right now! Teresa xx
Teresa I’ve PM you xx
Hi Sue. Recently been told exactly same news myself, was gutted. They are stopping my Copaxone next month cos it doesnt work now. Totally know where you are coming from.If I said I am accepting now Im lying. Sure I will just now & Im sure you will. We just need a little time to adjust. We will get there. Tracey xx
Tracey I’m not accepting it either really if I’m honest, took me long enough to accept R/R but hey ho life goes on, just have to accept that it will be a little different again. It sucks does this disease but I will not let it beat me. Try to remain positive I am Sue xxx
I think I understand a little the shock you are going through. I have been re-diagnosed recently. I thought I had RRMS now it is PPMS. I suspected it, as you say it is a different thing to be told it. I feel I anm doing ok with it. One bout of tears now I am back to normal (whatever that is!).
Please, if you want to PM please do. You will get to accept it. Life does go on.
Take good care of yourself,
I am RRMS but I was reading this guy’s blog and he was taking high dose vitd3 and he hadn’t progressed in 6 years. He was PPMS. I’ll try and find the link for you.