I’m reading lots of posts about new symptoms and early diagnoses of MS, I was looking to hopefully share any experiences with anyone who has been through it for a while now and wondered how they were getting on/feeling/treatments etc?
I was diagnosed in 2017 and have been using a walking stick over the past year and wearing an FES device. This helps me raise my left leg a little but I am unable to climb stairs unless on my hands and knees lol My balance is now quite eratic and I’ve had a few nasty falls. So far, though my MRI scans show no new lesions and I’ve had no other new symptoms (fingers crossed - hope I haven’t jinxed myself now)… I’m not on any medication other than Vitamin D3, B12 and quercetin..and sometimes take ibruprofen/cocodamol for pain relief.
I’m just interested to know how people are getting on who my be at the same stage as me?
Hi there and late reply. I think that unfortunately ‘time since diagnosis’ doesn’t have a lot of impact on the development of MS and its symptoms. I was diagnosed some 19 years ago and from what you say, my walking might be a little better than yours: around the house I don’t need to use a stick ( I use one for safety when out and use a mobility scooter for anything over around 10 mins walking ) and I can go upstairs two at a time - one of my exercises is to go up and down stairs as much as I can / up to 10 times in one go.
I do however have bladder urgency issues but seem to have got on top of that and some bowel issues.
as they say, everyone’s experience of MS is different
Can I ask why you aren’t on any treatment?
Hi @lajuice2424 . Late reply from me . I think that unfortunately ‘ time since diagnosis’ doesn’t have a lot to do with development of MS and its symptoms.
I was diagnosed some 19 years ago and from what you say, it’s sounds as if my mobility is perhaps a little better than yours - in some ways. I walk unaided around the house and can go up and down stairs. One of my exercises is to go upstairs two at a time. I do use a walking pole when out and a mobility scooter for anything over around 10 minutes walking. I also have some bladder urgency issues but seem to have got on top of that and some bowel problems.
As they say, everyone’s experience of MS is different.
Can I ask why you aren’t on any treatment?
Hello @Hank_Dogs
Good question - regarding treatment, I was offered fampridine about a year ago, but decided against it as a small percentage of people who took it would have seizure. If this were to happen, I would not be able to drive for at least a year and that would mean that I could not teach and pay the bills…bla, bla bla ….lol
@Hank_Dogs - I just wanted to add - yes, your mobility does seem a fair bit better than mine…and as for going up stairs two at a time, well, now that’s just showing off! Ha ha! (I’m only joking!)…To be honest, I’m jealous, what’s your secret?
Bladder issues …mmmm, yes, that can be just yet another obstacle to maneouvre….there’s always something to keep you on your toes..
Yep - you are right, everyone’s MS is different ..
Thank you again for your feedback - it’s comforting to share 
I just realised what I said re:
’’ ….there’s always something to keep you on your toes..’’
no pun intended.
Hi @lajuice2424 . I don’t know much about Fampridine bug isn’t that just to help with walking ?
I too have Relapsing Remitting and was offered a Disease Modifying Treatment. In those days there were only 3 available ( I must have since done something over 900 self injections of Avonex!) but I think there are now around 20 with various degrees of effectiveness in reducing the number of relapses and I could well be wrong but I think some of the more recent slow down the pace of disability. Have you not been offered a Disease Modifying Treatment?
What’s my secret hmm? Could be good fortune and nothing to do with my MS care regime which is basically: diet, exercise and meditation/mindfulness. I got my ideas on this from a book and later Website of ‘Overcoming - living well with MS’.The book was written by a Professor (of medicine) George Jellinek at one of the Australian Universities and who has MS himself. There now seems to be a whole team who curate the website and arrange various events, videos etc including UK based events and groups. I do think it’s worth having a look at the ‘OMS ‘ website for guidance on diet etc. Basically eating brain healthy / supporting foods, removing some foods etc ( I generally avoid saturated fats in favour of unsaturated fats- there is lots of stuff on this and MS) , try to exercise as much as I can , and do some mindfulness on the grounds that keeping a calm mind is one way of reducing stress and associated ‘inflammation’ of the immune system. stress or rather the way we / our bodies respond to it can be bad for everyone but particularly for those of us with MS. Overall a good thing I try to keep in mind is that ‘ what’s good for the heart is good for the brain and conversely, what’s bad for the heart ( diet, sedentary life, and stress, smoking, alcohol and the like ) is bad for the brain. I’m not totally strict with myself on all this but I guess it might of helped with MS plus of course, my general health!
Hi lajuice2424. I’ve been diagnosed with RRMS for over twenty years now. Eventually diagnosed back in 2004 but had first lost my eyesight in one eye back in 1993 and possibly even back in the late 70’s I may have had ms, as I failed a medical with balance issues.. failed to get into the RAF. Even now I’ve still got RRMS and I’ve never been offered DMT’s. Not once. I do have long periods without any problems at all. Currently having tightness in my buttocks. That’s getting slightly better now after a few weeks of taking methocarbamol. Still have several more weeks of medication for that and I’m sure that my GP would prescribe more if needed. I have had bouts of falling over. Nothing recently apart from the above and I’ve also got numbness in my feet.. both of them and particularly my toes which has been happening for quite a while now.
@Freshairman Thank you for your reply and sharing your story. I am sorry to hear about your eye and your balance issues which may have impacted your RAF admittance 
Isn’t it strange how MS has so many different variants and affects people differently.
It sounds like you are relatively mobile though despite the falls which is good, isn’t it? Perhaps that’s why you haven’t been offered any disease modifying treatments as it doesn’t require it. I haven’t heard of methocarbamol - how does that help you?
I’ve not had tightness in my buttocks but used to have lots of numbness in my fingers and toes..now I just tend to struggle with balance and am worried that my teaching days are numbered
@Hank_Dogs Hey - thank you for your informative reply.
Yes, fampridine is related to walking and to be honest, I am not interested in walking anywhere ‘faster’, I simply want to get to where I intend going and without falling over - speed is not the issue, safety is!
I’m still toying with the idea of the 3 day water fast by reviewing my ‘wellbeing’ by increasing my window of intermittent fasting…but not yet ready to commit!
Thanks for the recommendations
So I don’t positively know that it was ms that affected my balance when I tried to join the RAF, lajuice2424, but looking back it seems fairly likely. I’m not sure that I would have even been aware of ms 40 + years ago. I certainly didn’t know or was aware of knowing anyone with ms. And yes, you’re quite correct about my symptoms, in that I am or have been very fortunate in how it’s affected me over the years. It does come down too not just how many lesions we have, but where those lesions are too. The methocarbamol is a muscle relaxant. I’ve used baclofen on and couple of other occasions when I’ve had problems walking before and which helped recovery quicker. This time with the tightness in my buttocks it wasn’t working, so my GP prescribed the methocarbamol. Does seem to be working as the tightness is definitely easing. Oh yes, we’ve all got ms, but it affects all of us differently. My eyesight on several occasions..unable to walk on occasions too. Pins & needles. Numbness too. Nowadays my feet tend to be numb constantly especially my toes. But minor things in reality when compared to others on here. The DMT’s.. yes, it’s more than likely it’s because my periods of RRMS have long periods of feeling well and being well, too. And long may that continue. I pray that your teaching days are not over for you just yet, lajuice2424 and you can teach for many more years yet 
I was diagnosed with RR MS at the back end of 2017 and quite frankly the Scottish NHS failed me miserably. “any changes, see your GP” was all I got. 2 and a bit years later, no MS nurse to contact, no follow up appointments or further neurologist appointments. Moves to England with my partner, and all of a sudden, I’m speaking to an MS “whenever I need to” and getting out on DMT and a Neuro appointment annually after an MRI. It also transpired that Aberdeen didn’t carry out the original MRI correctly.
anyone else had this kind of experience?
Hi,
I’m sorry to hear that you’ve had quite an uneventful and quite negative experience in terms of lack of support.
I have to be honest, I must be quite lucky as I have felt very much supported and looked after (I live in Wales).
Yes, I have RRMS - like yourself was diagnosed around the same time approximately, but I’m having my first hydro therapy session next week and monthly physio appointments. I’m not sure if the daily exercises are helping as yet, but I do miss them if I forget to do them.
Just trying to stay positive and take one day at a time:-)
Good luck on your journey, try reaching out again to your GP and express your concerns with them. They may just have had an off day too 