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Thread: speed of mnd since diagnosis

  1. #1
    missmuffett
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    speed of mnd since diagnosis

    Hi all,
    I was told i had mnd in May this year,it had taken 18 months to get this diagnosis .I will try to precis this 18 months as i think its the reason i have mnd,though my neurologist says not!
    I had suffered sciatica and lbp for 10 years before my gp referred me to a consultant neurosurgeon.
    I had a spinal op in Jan 2012 ,a disc removed and a cage inserted. During the op a tiny screw was accidently dropped into my spinal canal and this had to be 'fished out'' and instead of the usual 3 days and home ,I had to lie flat ,and a bag inserted into my back to catch any spinal fluid that may leak! My case in a nutshell .
    Come September,following umpteen physio appts my walking took a turn for the worst,tripping,falls and in February 2014 it was confirmed I had dropfoot in my right foot..More difficulty walking plus falls.
    Had loads of tests last year inc nerve tests ,to determine what was going on and in December'14 I was referred to a neurologist via more nerve tests,and so in early May I was told I had ALS.moreso right leg,right shoulder,jawline and also weaker in left leg.I have been having symptoms in my hands recently.
    Since last year I have advanced from 1 crutch to a wheelchair ,although nowadays I can just about ''drag'' my feet across to the downstairs loo with a zimmer!(no stairs used since January'15 so sleep downstairs).
    Since May I have major weakness in both legs,still have falls,I have been told to have a change in diet,mashed due to swallowing difficuties, and am now having coughing fits when I feel I can't breathe .This last one frightens me most as I gasp for air and It doesn't happen! I actually have a long standing appt with a resp dr next week,but has anyone had all this happen to them,I try to remain positive ??
    Apologies for length of this but thought I would be best to give background info.)

  2. #2
    john
    Guest
    Hi Missmuffett,
    Sorry you need to be here. I have heard of others who have developed mnd following spinal surgery but I don't suppose the medical profession want the claims for damages so continue in denial. I think there may be other members on here who have gone on from spinal operations to become mnd patients but I don't know if there are any statistics around which back this up. Your symptoms sound similar to the paths of others but it is said that no two people have identical symptoms.
    If you want specific advice for any of your symptoms ask and someone will help or point you in the right direction. If you want someone to talk to (if you still have a voice) ring mnda connect. They are Monday to Friday mainly office hours but can offer a shoulder to cry on or point you in the right direction if you are looking for support. Not sure whereabouts you are but if you have a hospice near you they seemingly are very good at dealing with the needs of people with mnd.

    John

  3. #3
    Forum Member Terry's Avatar
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    Welcome to the forum Missmuffett;

    Sorry to hear of your history. John's advice is good about talking to Mnda connect and feel free to ask any questions and to join in.

    Best wishes, Terry
    Last edited by Terry; 11th October 2015 at 12:13.
    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.

  4. #4
    john
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    I think the lady is saying her neurologist doubts if her surgery has caused the mnd, not that he thinks she doesn't have mnd Terry.

    John

  5. #5
    Forum Member Terry's Avatar
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    Thanks John;

    Sorry Missmuffett, neurologists never say the cause of Mnd because they don't know. I have changed my post above.

    Regards 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
    missmuffett
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    Quote Originally Posted by Terry View Post
    Thanks John;

    Sorry Missmuffett, neurologists never say the cause of Mnd because they don't know. I have changed my post above.

    Regards Terry
    Thanks for replying.I have been attending a hospice since being diagnosed . It took 18 months of symptoms /various tests to confirm mnd and the symptoms have increased since.I now have swallowing problems and can't eat certain things,plus I sound drunk when I speak nowadays.
    Thanks for reading my story anyway.

  7. #7
    Forum Member Terry's Avatar
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    Have you got the things you need and perhaps looking at things that can help you talk.

    We are quite often looked at as having a stroke or being drunk.

    Love 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.

  8. #8
    Forum Member Lycanthrope's Avatar
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    Hi MissMuffett x

    Welcome to the forum. Sorry to hear about your trouble getting a diagnosis etc. All I can say is my dad experienced the same symptoms as you. Sometimes things seem to change day by day and then they slow down for a while. Here's hoping things level out for you for a while. tc xx Becky

  9. #9
    Forum Member Barry52's Avatar
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    Welcome to the forum miss muffett.

    There is evidence to suggest that trauma can trigger MND and you've had your share. I hope you are getting the best of care and as has been suggested please call on MNDA if you want advice or post on the forum for instant information.

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

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