I am new to posting herebut have been an avid follower since I was diagnosed in May 12 - this forum has helped me hugely to come to terms with my diagnosis, keep informed and become positive about life again after a very difficuly 2012 (my mum died 2 weeks before my diagnosis).
I just wanted to share a couple of positive things that have made a huge difference to me as I am feeling really positiver today
After a bad relapse in Jan which affected my walking and balance and after steroids didn’t help I was referred to a neuro physio who suggested I take part in a ‘mat’ class they ran which was a 6 weekly course a bit like pilates and focussed on core strength. Everyone in the group either had MS or had suffered a stroke and had varying levels of mobility. I found this class very hard the first week but I did all my homework exercises and by the end of the last week my balance and core strength was dramatically improved. I could walk much better and further and even wear heels again. I live in the South so not sure how widely these groups are available but if anyone gets offered them I would thoroughly recommend them! I have kept up the exercises and maintained the improvement.
I was also taking Avonex since July 12 and unfortunately the flu side effects just never got any better for me and as I work full-time I was losing all my weekends to the ‘flu’ and recovering just in time to start work again on Monday! After a year my nurse suggested swapping to copaxone which I started 2 weeks ago and I feel great at the moment. So far I have had very little skin reactions and nothing esle. I am injecting manually and I have just managed to make it part of my routine.
I feel very lucky to have such a great MS nurse, GP, copaxone nurse and neurologist and I really feel for those who do not have the same level of support as I think this type of support is so important especially if you are on your own like me. I went through a very bad period earlier in the year with anxiety and I think I was going through the ‘grieving’ process for my health.
My nurse made me realise that this was all normal and now I feel that I am in a much more accepting place and have some control over my health and my illness.
Sorry this post is so long, but I just wanted to let anyone who is newly diagnosed and perhaps having a tough time know it isn’t always so hard. Posts like this really helped me a year ago.
Kitkat - it’s nice to hear of someone having good support on the medical side of things (I see MS physio for first on Monday and my MS nurse had to chase it!)
Good luck, it’s encouraging to hear about someone coping well and getting the help they need - it’s good for eveyone to hear
I’m so sorry to hear about your Mum, you must really have had a tough time of it. Personally, I think MS is frightening enough, let alone without your biggest supporter being around, so I just dread to think how you must have felt at times…
It is so good to hear of someone getting a good experience with their MS team. I have a good team too. Makes the world of difference.
I am so sorry you lost your mum 2 weeks before your d/x. I bet that was a terrible time for you. Grieving for your mum and dealing with the diagnosis. I am so pleased that we were able to help you though. I too have received loads of help from my friends on here.
It is nice to read a positive post and I look forward to talking with you more.
KitKat, l did enjoy reading your post - l am a ‘old hand’ at ms - having had it for 31yrs. And its being/feeling positive that has kept me going. You’re right about the ‘core muscle exercises’ pilates/yoga/tai chi all help. l have a powerplate machine - that really works for core strength.
And l have been on LDN for about 5yrs - and that boosts the endorphins. Not a cure - we know - but certainly helps me cope with all the ‘symptoms’. Never been offered dmd’s - as l have SPMS. When l asked about them when they were first available -the neuro told me that the side-effects could be worst then the ms symptoms. Read some good reviews about Campath - but rarely hear of anyone on here using it. One review was from a doctor - who had gone from being a fulltime wheelchair user to being well enough to go back to work. [Think it was Barts hospital].
Well done though KitKat - Your posts will be very welcome - as there are so many folk on here who are in a very ‘low’ state and anything to boost them up is just what they need.
I’m so sorry to hear about your mum, I lost mine 20 months ago and there’s not a day goes by that I don’t think about her. I still take her lucky buddha to bingo as it was part of my last birthday present to her (she picked it out from the gem stone shop herself) and dad gave it back to me when she died. I take some comfort in having some of her things near me. I like to think she is still watching over me but. at the low points, I really wish I could have a hug from her.
I’m so glad to hear you’re doing much better now hun, healthwise. A positive attitude and good health professionals make all the difference. I have a fantastic neuro and MS nursing team at hospital. I had a relapse affecting my right leg in March this year followed by another affecting the left leg in June. I am on the list for physio but still haven’t heard anything so, since June, have been doing basic yoga stretches for 10 minutes every morning and evening. Just this week I have managed the 15 minute walk to work and back without my stick for 3 days running (I needed the stick for the last 5 minutes only on the first day as my balance was a bit off). I never thought I’d get there, but here I am ! I think I will cancel the physio now as there must be others on their list who need the help more than me. I’m going to try a full yoga class again soon as I think I’m ready now and I’ll see how it goes.
I’m also due to switch DMDs soon; my neuro says Rebif is no longer working for me after 4 years so I’m waiting for test results to see if I can switch to Gilenya (a tablet, yay), but if not then I will give Copaxone a try.
The main thing is that there are several options for us with RRMS and we have to keep on fighting and smiling in equal measure.
Posts like yours should be essential reading for the newly diagnosed - far better than the bullsh*t that Jack Osbourne keeps coming out with.
Thank you for all your replies, I am glad my post was well received. Thanks also for the kind comments regarding my mum. She remains a huge inspiration to me as she dealt with a diagnosis of a terminal illness with such dignity and was very brave. I am 35 and I miss her dreadfully as she was my best friend but she made me promise to be strong and deal with whatever comes my way and I try to remember that every day.
I know there will be more challenges ahead but I feel the last year has changed me for the better as I now value the simple things in life much more.
