Forum

Feeling Lost

Hi All

So I’m having a bit of a moment the past few days. :frowning:

I was diagnosed a couple of weeks ago and am still coming to terms with it all. I had a brief bout of optic neuritis last year but no other symptoms so I’m struggling to comprehend that there is a significant chance that I will have mobility issues in the future. I am an extremely active person at the moment and the thought of my body restricting me is killing me.

The worst part is that I don’t know what my journey will be - everything is quite vague online as everyone experiences different symptoms. Is there not a general progression that most people will follow e.g. unable to walk 100m in approx 5 years, will need use of stick within 20yrs? All my friends/family will tell me there is no point thinking about it but I want to plan and make the most of my body whilst its in good working order whilst I can.

What are other peoples experiences been like?

I’ve read on wiki (I know! I know!) that people who’s first symptoms are sensory often experience mild attacks within the first few years - does anyone know if this is accurate?

I haven’t been given an appt yet for the MS nurse or an MS specialist (the neurologist who diagnosed me, although was a lovely man, couldn’t answer any of my questions!) so i expect they will be able to answer these questions but any help in the mean time would be great!

Michelle

Hi Michelle, first of all, your right everyone is different in terms of symptoms, if their MS does progress & if it does at what rate is individual. Have you had a ‘label’ on your particular MS? secondly, you need time to get your head round things, being told you have any disease takes some digesting, but MS loves stress, it will rear it’s ugly head if you get very anxious. Everyone’s going to be screaming at you from here DON’T RELY ON DR GOOGLE!!! The MS society info is in abundance, trust me they know what they are talking about. Experiences of MS will vary from person to person, we are not text book cases, remember that although your MS team are very learned, unless they are experiencing it themselves, they cannot know exactly how it is affecting you. I know your head will be swimming with ‘what ifs’ ‘when’ & am I going to be severely disabled, truth is, a lot of MS patients only experience 1 relapse & may either never have another 1 or not for 30 years+. On a good note, if you are RRMS, there are DMD treatments that will be offered & will control it very well, you are in control of which 1 you choose, but read up on each of them before making a choice. Just remember, none of us know our journey with this malarkey, some are suffering worse than others, you are not necessarily going to. Write down all you want to ask your team, that way you should be better informed & wont forget what you need to say. Until you have seen your MS team, try & think positive, easy said I know, but we have all been in your position, life does go on with MS, nobody can predict the future lovely, get your concerns answered, but not through the internet!!! I actually dx myself with a spider bite once, a very poisonous 1 at that, & I have a NHS degree, enough said. Tracey xx

Hi Ice queenie. Im walking the same path as you at the moment - maybe a tad ahead, and for what it’s worth you have mirrored my feelings. I’m not very active but love my horse riding so I understand how you feel, but to be honest no one wants to think they will end up losing their independence etc. Hope you feel better for knowing you are not alone in your thoughts.

Hi Michelle My first symptoms - back in about 1980 were optic neuritis and numbness down my right side. I was told I “probably” had MS. I was diagnosed with MS in Feb 2016. Between 1980 and about 2014 I had hardly any symptoms at all - and even now i still work full time and so far the MS hasn’t restricted me too much. Please try not to worry about the future. Tomorrow is promised to no-one. Just live the best life you can in whatever circumstances you find yourself in. Juls

Hi Michelle,

There is no such thing as a "general progression that most people will follow ". The vast majority of people who have MS live quite ordinary lives, with MS having little impact on their day to day living.

There are no timetables or milestones. Only you can decide what are your goals and your limitations are and you should not allow a “label” (which is another word for diagnosis) to set them for you.

Best wishes,

Anthony

Icequenney, I think the lack of answers is the hardest bit of this. I flick between focusing on ‘anyone can get ill or be in an accident any time’. So why not just get on and make the most of were I am. To feeling a real need for more answers. But, I have concluded they don’t exist. I am really trying to just deal with the hear and now but my brain also really wants to think through the ‘what if’s’ and to try and understand likly time lines. But I believe it’s a pice of string question.

So I really feel for you and it was great to read that someone else is feeling/ thinking in a similar way.

P.s. I was Dignoseed 8 months ago and nothing dramatic has happened to me in that time. (Working full time / going swimming / walking dog).