Hi Worried22, I’d suggest your neuro caused fear and worry through a vague reference to your symptoms (of less than a year) being suggestive of ppms. It is irresponsible of any Neuro to put PPMS into your mind, particularly without the benefit of results from two or three MRI Scans with at least a year in between each scan, to see changes, if any. With no results of lumbar puncture, no blood test results (at that time) and no other tests done, it is impossible for anyone to say you have PPMS.
Other PPMS’ers here have learned over the years that worrying serves no purpose but we’ve all been there! As the neuro said it sounds like PPMS, it’s hard not to worry (even more for you being so young, and possibly do not have ppms at all). ***
My case: leg pain age 26. poor cognition & memory age 51, driving licence revoked age 51. 2nd MRI, lumbar puncture & evoked potential eye tests confirmed MS age 53. 3rd MRI confirmed PPMS age 62. Taking years for a full diagnosis. Lot’s of ppms symptoms throughout. Some have gone, some have stayed. I use buses, taxis, trains & planes.
***** Why worry about tomorrow or next week? At the moment you don’t have a label to say what is wrong. Something is, let’s hope a quick remedy of vitamins. There are lots of things it could be, even more things it won’t be.Looking things up on google et al will frighten you. Pop in an A&E & find a child, somewhere, has just tragically been killed. It sounds harsh but actually keeps things together. My mind and body are damaged, disabled and I have to rely on others to be dressed. But I do have proved ppms. The future might be bleak but not as bad as some. We have to enjoy what we can, while we can. If anything, perhaps you can change your Neuro because they’ve put this fear of the unknown into your mind, it means you torture yourself with what if’s.,
Best wishes honey, it may all be fine, it may not. Whichever, you will cope with whatever it throws at you
Thank you for this message, it made me feel better. I take it you had an extremely slow progression? I hope someone comes up with a cure soon.
I had no idea how cruel this disease was, I naively assumed it just affected your senses! I’ve learnt a lot this past month and whatever my final diagnosis turns out to be, I will continue to support MS sufferers. I really never knew how hard it could be,
As you say this disease is cruel,i am in pain most days but hopefully tomorrow will be a bit easier. I know its hard but try and just think about today and not worry about what will happen in the future. The snow is bad in leeds today but looks lovely although it kept me in.If its snowing where you are and you have to go out please be careful everyone. Take care. Jo xx
hi there I was diagnosed 3 years ago with ppgms I was told life expectancy is not much different than anybody else by maybe a couple of years , im still walking about now. i play golf once a week just keeping fit helps , but i get tired very quick legs a bit stiff but on the whole I feel ok. apparently it affects people differently I was told it could be between 1 year and 20 before it puts me in a wheelchair so im just getting on with my life sorry its happened to you at such a young age take care and keep your chin up
I was diagnosed 11 years ago, the neuro that I saw told me I would be in a wheelchair in 5 years and that there was nothing they could do. Not a great neuro, I got another one who is wonderful.
Anyway, I did end up in a wheelchair for roughly about 2 years, and as the stubborn ‘pig headed’ person that I am I knew that I couldn’t cope with this. This is just a very quick abbreviation of what happened. Wheelchair 2 years, onto 2 crutches for approx 4 years, then 1 crutch, now I don’t use any but have it in the boot of my car just in case I have to walk a longer distance.
I took up exercising with my WiFit, which is brilliant (well I think so), don’t get me wrong there are times when I can’t really do much but I always try and do something every day. I also have a MotoMed bike, which I got through the MS Society ( the local grants scheme).
My initial reaction to having MS was one of dread and horror, although it took me a couple of years to sort ME out, I now live with MS and enjoy my life as best as I can. I took up cardmaking, which I now sell to anyone who wants to buy a card, it is a great hobby and keeps me out of mischief.
I also go to the gym twice a week when I can manage, hopefully you will get a proper diagnosis soon, but try not to give up on yourself as I am sure you are stronger than that.
Keep in touch and let me know when you get your diagnosis.
Great read Jenn and well done. Perhaps you and I are just lucky, but I am a firm believer in exercise and trying to live a normal life. Like you I refuse to walk with a stick unless it is necessary i.e. walking any distance or over rough ground where tripping is a danger. What other people think of my peculiar gait doesn’t worry me in the least. Also have my own weights and an exercise bike in my garage which, especially with the weights, I use almost every day albeit for short spells.
For those who feel that they are unable to do the same then I accept their predicament, count myself lucky to be an exception and sincerely wish them well in doing what they are able to do.
It took me a while to get to the stage I am at now, but it was worth it (if you know what I mean). I took control of the medication that I was on as I felt that it wasn’t doing anything for me except keep me permanently stoned!!!
So from being on 58 pills a day and cutting it down to 6 a day, this on its own has made me feel so much better. I told my GP before I cut down everything, but the best of it was that I came off all the morphine, which solved a few problems anyway.
I have now become an MS buddy through Shift MS, who are piloting a service where newly diagnosed people can speak to someone who has MS, which I think is a terrific idea.
If I can help or assist anyone with just one small thing, I feel that what I have went through really meant something. Maybe that sounds silly, but it is nice to be nice.
Hi again Jenn, I’m so pleased to hear you have managed to get yourself so much better and especially off most of the medication. I worked with a guy who was drugged up to the eyeballs because of a breakdown. He was like it for 10 years or so and missed his kids growing up. For some reason he gave up the medication and was suddenly back to normal, so I am very wary of taking medication, not that I feel that I need it. I appreciate though that it is necessary for some people.
Keep up the good work mentoring. It must be very satisfying and is certainly invaluable for newly diagnosed MSers. Your experiences will be a great help to many.
Hi Anon Yes my diagnosis is definitely PPMS, I have had all the usual tests to confirm this. My neuro generally gets me an MRI ever 2 years so that he can keep an eye on things and how they are progressing. I think myself lucky the way things are for me. As much as it sounds that things for me are rosy, I have symptoms which can be really bad and there are days when I am in excruciating pain, I just tend not to concentrate on the negative stuff as much as I can. The only thing I can hope for is to keep going the way I am and not give in to MS, which I did do in the beginning. Keep well. Jen xx
I’ve been given a working dx of PMS, and guess I’m waiting for another S or P, eventually… and until I get proper help, I’m making things up for myself (right or wrong)…
I’ve been concocting my own exercises with help from MS Society Keep Active videos and others that I have been given over the years, but I do tend to overdo things. I think that I was ‘hurting’ my back, so stopped for a few days, but then I got cross with myself because exercise is sooooo important.
Now I am doing fewer exercises, mainly upper body exercises, but I am doing ALL of them standing up, not sitting down for half of them… AND I do believe that just doing a few standing up is actually HELPING MY BACK… Just that little need for balance is helping my back, my balance, my arms and fingers, and my heart and lungs…!!! And I am not exhausted afterwards…!!!
So, if you can’t do what you usually do, just do a few arm exercises standing up…
Thank you for answering my post, I must admit when I started exercising I ended up having to go and lie down and rest as I think I thought I was a marathon runner in training.
I have realised that I can’t do as much as I used to do, before my diagnosis. I have been going to an exercise class for people with disabilities and the majority of this is seated. I bought myself a set of arm weights which I use when watching the tv.
I am going in for a small op on the 30th January to try to fix a horrid symptom which I have now had for over a year, hopefully this will work and I will be back to myself again. lol
As you said exercise is important and I do try to do something every day, but I don’t worry about it if I can’t. Due to this symptom that I have I really haven’t been up to doing too much exercise, hopefully that will change once this op has been done. Fingers crossed.
I hope that you get either your P or S to finalise your diagnosis, as you need to know what you are dealing with. Good luck.
