I really don’t want to offend anyone but I wanted to ask ppms users how quickly or slowly their mobility deteriorated? I’m just trying to figure out what type I have because I’ve been told rrms however I think that’s wrong as over the year since dx I’ve slowly got worse but had no major relapses. As each month passes I notice little things changing…atm its my arms and hands,they tire very quickly…never had this few months back.my main progression is mobility…I can still walk but not as well and as far as a year ago and legs soon much weaker now. Could drive fine a year ago,now can only drive short distances as legs get to weak can barely move from gas to brake. Also I’ve had small episodes,like double vision but only for say 40mins so nurse said not relapse.
Hello Rose, having been diagnosed in 1994 and reading what people have posted, I’d say that it’s impossible to be precise about anything. We all seem to go at different rates. What I have noticed however is that some symptoms have been temporary and disappear as mysteriously as they came. I am sorry to hear that it has been causing you so much trouble. Stopping work was a huge move for me-I’m still trying to come to terms with it. I’m lucky to have a lovely wife and daughter (another Rose) to keep me busy. Now I try to do things when I can but some days I have to just sit. Best wishes, Steve x.
I am a ‘likely’ ppms’er and my MS nurse even said it a few weeks back, you might have had it for years! I didn’t exactly present as an MS candidate, I was referred to neuro by the spinal unit as my spinal MRI revealed lesions and not the suspected trapped nerve!
And when I think about it (and I am still trying to join the dots), I had my first weird happenings at least 9 years ago. I was still teaching classes at a gym just a few weeks before Dx,that was last April.
I have to use a walking stick to even leave the house now BUT I think that truth be known, I probably actually became a fitness instructor, with MS!
There are no rules with MS and I think the best we can do, is to take any help we can get and try to live life as fully as possible RRMS is difficult to Dx too and can leave weaknesses behind after relapses, so speak to your neuro or MS nurse if you’re concerned.
Take care and remember, we can only speculate, we’re not the experts
I have had ppms for a long time, and my mobility was the first thing I noticed, but my progression has been whereby it has just happened slowly.
Although I use a powerchair, I started with sticks, crutches and walker before a wheelchair was needed, but please bear in mind that ms affects everyone differently, which this forum proves.
If, in the future you do need a whèelchair, I wanted to say it is only an aide to make your life easier, mine has enabled me to do things and go places that I would not have been able to do, life is still good.
I agree with the responses you’ve had, it’s very difficult to determine type of ms. I was dx PPMS in June 2013 after a long time in limbo. Although that’s my dx I can now, with hindsight, see that I’ve probably had it for at least 15 years, possibly then RR but I was stubborn and called myself a wimp or thought I had a virus etc. This would mean I have SP but as I didn’t get it seen to them they have to assume this is my first attack which would go with my current dx. I’m not arguing the point as my treatment won’t change.
The rate we progress is unique to us all and like many of you varies from day to day or following any activity or illness. Nobody will progress in exactly the same way but have many symptoms in common, though the severity will change. All I can suggest is that you not worry about what may or may not be a problem in the future but just enjoy what you can do now and make the most of it. We’re all here and will offer support and encouragement in any way we can. Take care
Hi Rose, I can trace my MS back 40 years. I’ve been SP for many years. However I can still walk…albeit I wobble, look decidedly tipsy sometimes and am so weak I can only take few steps before I need to sit down, but the point is 40 years on and I can still walk! Fatigue and weakness are the symptoms that rule my life but I really enjoy my life and I’m very happy. Whichever type of MS you have, you could well progress slowly as I have. It’s so hard for you to come to terms with it but if you can try to make the most of your life and enjoy the things you can do, you will, given time ,learn to accept and cope, As Cath has said we are all here to support you. Best wishes, Nina