Hello,
I have a question about MS.
Is it possible for someone t have MS and it not affect their walking or their legs?
I have been diagnosed with MS for 18 years and my walking is not (yet?) affected on a daily basis but twice recently people have presumed that i am unable to walk distances so have made dicisdecisions that have negatively affected me all because thay didn’t bother to talk to me about my disease and thought they knew more than me or my neurologist.
These people weren’t doctors or medically trained in any way. I get that they were trying to help but in doing so they caused offence and one person’s decision resulted in me having to walk more (not a problem though really as i said) and ended in me leaving my job.
My questions are has anyone else had other people thinking they know best for you with talking to you about things and does MS always eventually affect your legs?
Many thanks in advance,
RL
Myself, sister and cousin all have MS.
With me and my sister its all to do with mobility/fatigue, but with my cousin she do get very fatigued and a lot of pain in her joints, it also effects her vision when she’s going through a rough period, but her mobility is fine.
When I see out sometimes you would not think she had MS, but then on other occasions she can hardly see further than her hand and has to inject herself help with the pain.
We are all in the same boat, so to speak, but can be entirely different.
I do wonder though if it depends on where you get your lesions ?
Myself and sister both have lesions in the spine with clear brains, but my cousin is the other way round.
Just a thought ?
My friend who i sadly lost last year had MS for years so did her brother. She had RRMS. When she died she was over retirement age and worked every day. Her mobility was ok. Her main issues were fatigue and cognitive stuff but she coped well with it all. she used to travel constantly with her work. Her brother also had less problems with mobility it was more sighted, brain issues and fatigue.
Sadly she had an undiagnosed bone tumour in her spine as suddenly she would get terrible pain in her spine, and doctor kept saying it was her MS. I said to her several times i felt it wasnt and finally she pushed to see a specialist and they found it was grade 4 tumour in her spine inoperable, and within several months she was gone. If you looked at her though you would never think she had MS. but it is a snowflake disease and everyone is different. You can have no lesions or few and have very bad disability, and 1 lesion and be in a wheelchair doesnt seem to be any ryme or reason to MS.
I had MS for approx 17 years before it started to affect my mobility. As The Crazy One says there’s no rhyme or reason to it.
Best wishes
Jan x
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This might sound stupid , but it is slowly driving me crazy and would be hugely grateful if I knew that other people had these thoughts. Here goes I think that the neurologists have misdiagnosed me and that I may not have m.s at all . The m.s nurse asked me what I think I may have instead that gives the symptoms and lesions that suggest m.s. I do have a very painful knee but perhaps that is just adding to the misery. I am slowly driving myself crazy .
I often think I’ve been misdiagnosed and that’s not just me in denial. I only just meet the McDonald diagnostic criteria. The only definite thing is the oligoclonal bands in my CSF. I’ve got 1-2 possible lesions in my brain and a subtle change on my c spine. I think because my Mum has MS it was what was looked for first. Thing is I’ve got to trust in the professionals I guess.
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Thanks for your replys all.
I am sorry for your loss Crazy Chick.
linda c and smurf69, i am very sorry and really don’t know what to say.
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When I was first diagnosed I accepted it straight away because my sister had it and also my 1st cousin, plus I was showing all the symptoms that my sister did, but 2 months after the first attack everything just seemed to settle down and I was feeling pretty much “normal”, things stayed like that for about 18 months, so I started to doubt the MS thing big time, but eventually the MS monster started to wake up again and has stayed awake ever since.
Hi Linda, i think its kind of normal to think that way. I have myself. Perhaps we are just using wishful thinking as its kind of hard to be given a life changing disease with no real good end in sight so we want to sort of deny it but not deny it but kind of hope in the back of our mind they have got it wrong.
so what else could it be? Other diseases have lesions and OBands in the csf. Lymes for example.
Oligoclonal bands
Venereal Disease Research Laboratory (VDRL)
Viral antibodies and antigens and polymerase chain reaction for West Nile virus, cytomegalovirus, herpes simplex and herpes zoster, and HIV
Lyme titer
When you read about these things you think to yourself NAH its MS.
I often think its the other way round, people NOT diagnosed with MS have it.
My monster is sure as hell becoming more and more known to me, so i am now thinking they have got it right. unfortunately.
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I sometime think mine is Lyme tbh. Did have bite and bullseye rash about 6-9 months before symptoms. Problem is was given antihistamines and steroids rather than antibiotics. Lyme is notoriously difficult to diagnose but does share a lot of MS signs and symptoms. When I used to mention it to my neurologist and GP I just got raised eyes so I’ve stopped asking. I’m now on ocrelizumab.
Hi all . I have been to a new group today called F.A.C.E.T.S which is based on new research through the m.s society to help us cope with fatigue. It was led by an OT who has an interest in m.s . Whilst I was there I felt ‘normal ‘ to be with people who had the same worries , concerns and anxiety’s as myself and ultimately with us all who live with the MonSter . It is a 6 week course , if anyone has the opportunity to join a course I think you may find it helpful .
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