I think i am fortunate to have the least form of ms i.e relasping remiting. What is the worse thing for you about knowing you have ms ?. For me at first was the physiological side of things, costantly thinking about it. But now i find it is the variable side, things seem to change with time. Not knowing when the next relaspe is coming.
I agree with you on that one. Its the not knowing how you are going to feel day to day and having no control over it what so ever x
That’s exactly how I feel. From looking at GP notes, we know there were 2 separate incidents 20 years ago ( possibilities noted by 2 different GPs) and then nothing that was notable until 18 years later.
I’m much better than I was this time last year, but any little twinge or unusual event has me wondering “is this another relapse?”
My MS is very mild - I haven’t had a sick day from work in 13 years and that includes the time I was diagnosed. I stilldance and go to the gym etc so I am incredibly fortunate.
So the worse thing for me is that I am prohibited from several things because I have those two initials hanging over my head. I can’t give blood and i had to come off the bone marrow donation list. I can’t get insurance for some things etc.
But if this is the worse I ever suffer from I will consider myself very lucky indeed
I agree completely and even my neurologist is unable to give a good reason as to why we’re prevented from giving blood and helping others. I’d love to see the MS Society do more to challenge this, and that includes some of the mimsconceptions which makes getting insurance harder.
The uncertainty following diagnosis was difficult to deal with at first, but I’ve learnt to live with everything that happens (and has happened).
Other people assuming that everything that goes wrong is related to my MS annoys me: I am allowed to get colds, pull muscles, have a headache and feel unwell from time to time without it being because of MS!
As someone newly dx, for me its the fear of the extreme symptons people have (im 32yrs old). At first I was freaked out at the thought of a walking stick - now I think “well if thats the worst it will get I will be happy”. It is the unknown. I guess with most illnesses you have some idea as to how they progress etc.
I was going to ask about giving blood. I have done for the past few years and have just had my reminder. Does it exclude all types of MS? I have RRMS. If so - what a shame and actually WHY?
Not knowing whether problems are being caused by MS or not. I get really bad pins and needles after short amounts of time sitting cross legged for example, but is it just really bad pins and needles, or is it MS pins and needles? I’m otherwise quite healthy, I go running and things, but I do wonder. I got diagnosed at 17, so it’s hard to think of a time before MS, if that makes sence.
And I was dissapointed when told I wasn’t allowed to give blood! I assmed it was because they didn’t want me to have some kind of relapse? Don’t see how loosing a bit of blood would hurt, but then again I’m not the expert. I signed the organ donor register instead.
lf you google MS and blood donating - you will see differing ideas - apparently in 2008 - new rules allowed people with MS to donate blood - as long as they are feeling fit and well - and ambulatory ‘walking’. lt comes under chronic illnesses. -
l suppose as they do not know for certainty what causes MS - it could be a risk. What if it is a viral infection? As is now being researched. Best to err on the side of caution.
For me having RR MS, I agree, it’s definitely the ‘not knowing’ when and how the next relapse will hit me. That’s the pits!
This stems from the major relapse I experienced in June last year that led to my diagnosis; although I’ve actually had MS since 1995. I was perfectly happy and, I thought, very healthy. But, I woke up four days before I was due to run a half marathon, dealing with the effects of what I believed to have been a stroke. My left side was partially paralysed and spastic.
I never saw that coming!
Even though I have now started treatment, I go to sleep every night now wondering how I will be in the morning. It has made me completely paranoid.
Secondary Dystonia is my overriding MS symptom, but I’ve been very, very lucky so far, I’m back training and everything feels almost good. But, that said, the day will surely come when I can’t recover. That truly does fill me with fear!
The worst thing is the unknown…I’ve always been a planner and organiser, but this is something I can’t predict. I’m 34 and things have been relatively mild so far (saying that, I’m a stay at home mum and I know that of if I’d had a job these last couple of years, my sick days would be mounting up!). Walking aids are now the least of my concerns…pain, continence problems and loss of independence are my big fears. Losing my driving licence would be a massive blow with two young children to ferry around… Best not to dwell on the ifs, it may never happen xxx
I hope this isn’t going to sound like I am moaning about this as I promise you I don’t normally.
The worse thing for me is not being able to walk far because of the constant pain knowing my husband would love us to go on walks together and he retires from full time work in 2 weeks. I always feel as if I am holding him back.
I was also very dissapointed when told I could not donate blood anymore or be on the bone marrow register.
Hi, I dont have MS (anymore!), but after being mis-diagnosed with it, I do have a very similar incurable beast to live with.
I think the worst thing is not being able to go out just when I feel like it…I am dependent on 4 carers for so many things.
I think for me as a (previously) very independent person, it’s knowing that I won’t be able to support myself financially anymore, and that I’m having to rely on others more for my physical needs…
by far the worst thing is not being able to communicate properly and folk not giving me time to try and explain myself. double incontinence and using powerchair take some getting used to but doable…
and not being able to write and knit my baby hats for premature babies in hosp, gggrrr
but hey, i am still here
No cure available.
The other thing I find depressing is attending the MS clinic. It’s a small, cramped waiting area and if someone is in a wheelchair, everyone has to move in order for it to pass.
I know I’m lucky to have reached the age of 45 with so few problems, but I find it difficult visiting the clinic as everyone I’ve seen so far in the waiting area is either in a wheelchair or on crutches.
worse thing… is having it x
worse thing… is having it x
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Mrs J. I agree with you.
For me, by far the worst thing in the loneliness. People treat us differrently and we are no longer accepted so well by ‘normal’ people.