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Thread: Hello!

  1. #1

    Hello!

    I am a young 53 year old lady newly diagnosed but have been told I have had MND for nearly 5 years now. Just for the first time today I'm feeling bitter, resentful and tearful because now I've been told what I have I can't kid myself anymore that it could be something else?! At first I was fine and came out if the hospital thinking 'I'm actually fine?' But today I've struggled and this manifests itself as a mood or argumentative with my husband. I've got my eldest daughter's wedding in 3 weeks and feeling upset about what it should or could have been like for her if I didn't have this? And yestetday my youngest daughter was saying she wants to get married next year and now I'm really scared about how I am going to be by then? I always thought they would tell me I had something else because they have treated me for a neuropathy for the last 2 years? So it's unreal now that I'm finding out I've had MND for 5 years already?? I seriously haven't known so haven't been living like there is no tomorrow? Now I feel like I have to but my husband is working so we can't just take off and have those fantastic trips? What did you all do? How did you handle things? I feel like I'm on borrowed time now already and panicking about having time for everything I want to do? Any wise words?

  2. #2
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    Cruisegirl:
    If you have had MND for 5 years that alone is very slow.
    if you did not know then it suggests extremely slow.
    A few questions:
    1. What are your current symptoms?
    2. What is your degree of functional disability/
    3. Where and how were you diagnosed?

    Regards

    Charles

  3. #3
    Forum Member Barry52's Avatar
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    Hi Cruisegirl and welcome to the forum.

    As Charles says, you probably have a slow progression MND and you may expect many years ahead. Yes you will have to adjust and adapt but make sure you live your life to the full and enjoy your family time. You may want to discuss with your husband his work life balance and I understand it can be a financial issue for some but our time is precious.

    I hope you still have mobility in which case do what you can while you can. There are many high tech items which help us get the best out of life i.e. scooters, power wheelchairs, communication aids and many more. Remember to stay positive and that way you will make the most out of living with MND.

    Best wishes,
    Barry
    Iím going to do this even if it kills me!

  4. #4
    Hi Charles, I had a long time before I saw a neurologist, 3 years and had been told I had trapped nerves and herniated discs? This was a red herring. I started with symptoms in 2013 and it really just was painful left heel that developed over a few months to a weak ankle and a limp? I was working in school and noticing going up and downstairs my left leg was heavy and dragging a little. My GP referred me for an MRI then eventually I saw Podiatrists and then Neurosurgeon for my back. By 2015 my left leg gave out on me in the street but that was the only limb that was affected at that time? I was on crutches then and still working and being seen by various people but no answer for why my leg was weak? My GP was tired of me asking what was wrong and just said I'd had an 'event' that had caused a lesion? I wasn't happy with that and pushed to see a Neuro. I had an emg/ncs but was told it was ok and just something at L5/S1 entrapment? But it was just weak no pain? It was 2016 when I went privately to see Neuro and he did all the tests on me in hospital over a week and told me he wanted to put me on immunoglobulin infusions to treat a neuropathy? So we embarked on that and I thought I saw some benefit from it but it was 6 weeks apart each time and wore off at 3 to 4 weeks so I started going down again. The benefit I felt was just more energy.It didn't help me start walking unaided or anything? It was last summer when he said that I was still deteriorating even though I was having 6 weekly treatments so wanted a second opinion and that was when I was sent to see the Professor. He agreed that it was very difficult to tell whether I had a neuropathy or a degenerative issue but would run an emg/ ncs and then a cervical spine MRI. He said it was the needle test that indicated it was a very unusual LMN variant of MND but he was certain it was and not a neuropathy. So my infusions stopped last week and I'm just waiting to hear from the hospital to be referred to the MND team. I'm using a wheelchair and a power chair now but still have upper limb use speech breathing and swallowing all still ok. He said that he would call it a really slow progressing version of PMA. I get twitching all over, no pain except discomfort from sitting too much. I use a mini exercise bike to make sure I move every hour and cover about 3 to 4 miles a day on it. I get alot of funny sensations in my lower legs. Not twitching it's burning or freezing cold and discoloration of the skin. My muscles are still good in my lower leg but floppy in my thighs now and my bottom has gone a bit. My left hand has gotten weaker over the last year or two but I can still use it and hold things in it? The back of my left hand is atrophied and the base of my thumb. The Neuro thought I had multi focal motor neuropathy which mimics MND but because the immunoglobulin wasn't stopping the progression they referred me to the Professor who told me it's MND? I'm not sure if we are allowed to be specific about names and places are we but I'd be happy to say where and who diagnosed me if we are allowed?
    Thanks for replying Charles. Wishing you well

  5. #5
    Forum Member Terry's Avatar
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    Hi Cruisegirl and welcome to the forum,

    Sorry to hear of your recent diagnosis and most of us had similar feelings and they will continue for a month or two.

    Not much to add on what others have said but you can say hospitals name, etc.

    Feel free to ask anything or share things with us.

    Best wishes, Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  6. #6
    Thanks Terry
    I was sent to Sheffield Royal Hallamshire from Leeds for a second opinion. Treated for a multifocal motor neuropathy at Leeds General Infirmary for nearly 2 years.
    Thanks
    Jo

  7. #7
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    Cruisegurl:
    given your explanation my advice is:
    1. Its slow. If PMA then extremely slow. You in all probability have many years ahead (as Barry says).
    2. So don't panic. Tell your family you have a slow progressive condition.
    3. if you can work sitting down (SCOOTER OR WHEELCHAIR) KEEP WORKING.
    4. Get the aids you need. PMA is a long life albeit with challenges.
    5. Enjoy your daughters' weddings. And more.
    6. Don't panic. Time is on your side.

    Best

    Charles

  8. #8
    Thanks Charles that's cheered me up this morning I have had no news yet from the hospital about what next so feel a bit adrift. I've contacted MNDA Connect and they've already sent me some info on meetings and resources so that's brilliant. Can I ask you about your own situation? It is good to hear from knowledgeable people who have already trodden the path .
    When did your symptoms begin? And what were they?
    How long to diagnosis?
    Thank you
    Jo

  9. #9
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    Jo:
    If you have PMA then in this community you are 'fortunate'.
    People with PMA end up with mobility loss over time but retain speech, swallow etc and have a long life.
    If you had a top Professor diagnose you that is good.
    The idea of living years in a wheelchair probably terrifies you now but one adapts. If mobility is your disability then a full life is too be led.
    The average from diagnosis to death with MND is 2 years so PMA is great news in this world.

    I have MNND but a slow progressing version. I self-diagnosed in 2012, formally diagnosed in 2013. Worked until April 2018.
    I am battling now: Mobility very poor, can shuffle indoors with a rollator, use wheelchair and scooter outdoors, arms weak, speech impaired to a degree.

    My wheelchair is a lifesaver.

    You potentially have some very rich years ahead. You can travel. You can still do those things with your husband. Differently but you can do them.

    Charles

  10. #10
    Forum Member Ellie's Avatar
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    Hi Jo and welcome to the Forum.

    Sorry the diagnosis wasn't MMN - shame the lack of improvement of your symptoms after the IVIg infusions didn't prompt LGI Drs to rule out MMN earlier

    Anyway, as others have said, a diagnosis of a slowly progressing PMA should allow you to be around for some years yet!!

    It's still a life changing condition with challenges ahead, but you'll have time to adjust to each stage. There's no reason why your next 5 years will differ from your last 5 years...

    Once you're linked in with the MND Clinic you'll have contact with OTs, Physios etc who'll keep an eye on you.

    If I can be so bold as to suggest you use paragraphs if your posts are long - it makes it much easier to read, especially for those of us using eye gaze computer control. Please don't think I'm being rude

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

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