Hi, just been diagnosed with spms totally gutted. Neurologist not much help and not heard form Ms nurse the referral went to her three months ago. I feel totally alone and unsupported and at a crossroads with no guidance to what route to take.
I’m not at all surprised you are gutted. I presume the neurologist has identified relapses from your past which leads him/her to diagnose SP from the outset (as secondary progressive is what relapsing remitting can become; so for an SP diagnosis, there must have been a period of RR first, otherwise it’s PP - primary progressive).
I am very surprised that you’ve not heard from the MS nurse. Usually they are pretty good and proactive, maybe the referral has been mislaid? Perhaps you can get the contact details and make contact yourself. If you don’t have the contact info yourself, try phoning your neurologists secretary and ask how you are to make contact or alternatively, get him/her to remind the MS nurse about you.
It’s a tough learning curve to be diagnosed with MS. And for your initial diagnosis to be progressive from the outset must make it all the harder, since there are no disease modifying drugs for SPMS.
There is a wealth of information available on the MSS site and also on the MS Trust website. And additionally, there are many people on this forum who will do their utmost to help you get your head around the bloody disease and to help out with questions and symptoms.
keep talking to us here and we`ll do our best to support you chuck.
Sorry for your diagnosis (it is a scary and lonely roller coaster) and sorry for the lack of support offered to you (go back to your GP and demand to be taken seriously. Take a list of your needs - ask for advice, counselling and referrals to services. (When I told my GP that I cried all of the time, whilst I waited for counselling, he made regular appointments with the nurse and although not MS trained, she and I read up and discussed things) your GP has a duty of care.
Things that have helped me since diagnosis (in no particular order!)
This forum. People are sensitive and the advice is always useful
Although I can’t promote things, I read a book by George Jenilik and I have changed my diet etc. I feel as though I have some control.
Telling my friends and family - my family are patient and my friends have reacted with kindness and support.
Telling work and signing myself off …
Crying - it is a release!
Exercise - I never used to. I now run -ish and do weights
Going to the cinema? A hobby that I can imagine continuing
I do hope that you are finding strength. Warmest thoughts, Patience
Yes agree, I keep a diary, a symptoms diary and I have begun to write (rubbish) poetry! X
Thank you everyone for your helpful and kind words. I now have a counsellor and an MS nurse and they are both great. Not back at work yet as battling with neuropathic pain and having gabapentin titrated presently. Seeing your comments has given me hope.
Hi patience, I find writing poetry very cathartic, keep writing.
Was dx with SP 9 years ago and since then things have got worse but slowly. My advice to you would be keep your core. Do mild Pilates exercises. You may not feel your doing much but it really does make a difference. If they offer you a block of sessions about ms go to them as I found them invaluable.
I have found if you stick to a balanced diet the fatigue is bearable allow yourself some sweet treats but keep them to a minimum. I find if I eat junk I really feel awful.
I still work but it’s part time now. More than anything be kind to yourself and rest when you need it and don’t overdo it as you will pay for it at some point.
Cry with frustration if you need to it really is a release.
Your are so right about the exercise and diet, I have reduced junk and do exercise every day for core and it is making a huge difference!
I am am about to try and get back to work on 32 hours but if that is too much I will reduce them, work is good as it keeps my mind working and my life seems more purposeful.
I cry cry and it does release emotion!!
I have been diagnosed with PMS so far. I was thinking that with some more tests, they will add on another P. But as I reflect on my past, I think it might also be SPMS. There are events from my childhood, teenage years and young adulthood that may have been MS symptoms, but I shall have to wait for another appointment with the neuro.
I did have a different neuro some 10 years ago, but this young neuro says that ‘he missed it’. He was also quite excited that I had had MRIs done then, too, so he has them for comparisons.
I have had a ‘bad leg’ for over 12 years, so am pleased to have a true diagnosis at last. I was actually saying to physiotherapists and GPs that my good leg is getting bad now, too, but I thought that that was because it was doing most of the work, covering up for its bad friend. I did ask if it was MS but they all said that I was too old, it was a young person’s disease.
But I am 66 years old and have had most of my life, though did not expect to end it with MS…