View Poll Results: Did anywone had symptoms for more than 3 years before getting diagnosis

37. You may not vote on this poll
  • Yes, it took more than 3 years (had numerous testing while waiting)

    3 8.11%
  • No, it hasnít been that long

    32 86.49%
  • Yes, it took more than 3 years, but didnít see a specialist until the diagnosis process started

    2 5.41%
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Thread: From onset to diagnosis?

  1. #1
    Forum Member
    Join Date
    Feb 2018

    From onset to diagnosis?

    Did anyone had more than 3 years from onset of symptoms to getting a diagnosis? If yes, what was that symptoms you consider as onset?

    Thank you for your time!

  2. #2
    Forum Member Lynne K's Avatar
    Join Date
    Nov 2017
    I had been losing my ballance for 3 or 4 years before my MND initial diagnosis (I had been discharged with no diagnosis about 10 months earlier). I got a definitive diagnosis of ALS in about November 2017. My neurologist said that seeing I had taken 3 years or more (seeing as I may have been having symptoms for quite a while before I registered it), she said that my deterioration is likely to be slow. But that could change. She said that the boundaries between ALS and PMS are blurred. I hope that I will get to be one of the small percentage of ALS sufferers that survive over 10 years. I'm 64 in a few weeks. Regards, Lynne

  3. #3
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Hi Dott;

    I was diagnosed about 11 months after I felt a little generally weakness and a little slower moving right hand.

    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.

  4. #4
    Forum Member TIANDB's Avatar
    Join Date
    Jun 2018
    Middle England
    Hi Dott.

    I notice twitching's in my Right lower leg muscle in June of 2017 I used to walk, swim and Cycle so I put it down to exercise .
    Then in November I stopped exercise as my right foot started to slow and the twitching's seemed to be more general, my voice started to slur in January 2018 and I knew inside what I had. I went first to my Doctor on the 23rd of April 2018 and was diagnosed on the 18th of June through constant pushing for action by myself and a few angels.
    I keep harking back to my heels seeming to shrink some ? before June last year also I had a strange tumble 18 months ago just a one off, when walking. I put it down to my weak R ankle which I had Injured in the Army 30+ years earlier and always it felt weak.
    Now a very heavy right leg with a dropping R foot and a heavy left leg with slow foot. Arms and body weak my left arm is slowing and I seem to cough and splutter some. What a journey and a trial. Onward's.. TIANDB
    Last edited by TIANDB; 29th July 2018 at 12:30. Reason: ADD

  5. #5
    Forum Member
    Join Date
    Jan 2018
    was diagnosed August 16 but only after an official complaint to my hospital as my so called consultant kept dismissing the weakness and wanted to give me painkillers (go figure ). first went to doc January 16 with what I thought was a trapped nerve in my leg from the previous year that didn't want to shift from the previous summer. by may 16 I went off sick as was exhausted all the time and couldn't physically carry myself. in July 16 had a fall like Stephen hawking in the film ,no hands out and chin took the full brunt. fast forward to now pretty much paralysed and in a power chair.

  6. #6
    Forum Member Newbie17's Avatar
    Join Date
    May 2017
    My diagnosis took 3 days.
    I saw my GP on the Wednesday as I had noticed a weakness in my right arm. My tennis was going downhill too!
    I had a private appointment with a neurologist on the Friday who told me it wasn't good news and I knew then .
    We were given no support just sent home in complete shock.
    It was a few weeks before I was referred to the MND clinic
    Everyone's story is different but all equally devastating.

  7. #7
    Forum Member Tim-griffiths's Avatar
    Join Date
    Oct 2017
    Lambourn Berkshire england
    Mary,my wife was diagnosed about 14 months after first going to the dockers with weakness in her right hand and gradual lose of speech, initially I thought she had had a mini stroke and nobody was telling me anything until Mary finally got her diagnosis

  8. #8
    Forum Member chebs's Avatar
    Join Date
    Feb 2018
    Suffolk UK
    Hi Dott and friends,
    Back in 2012 was admitted to local hospital by ambulance with ? stroke.. I had weakness in right arm and slurred speech, on admitance and being transfered to CT scan table my right leg wouldnt move, panic set in.After blood test etc they decided I was suffering with Hemiplegic Migraines.I had constant problems with balance, shaking if holding a cup, cramps and bad crushing pains in head..2014, I was back and forth to hospital, it was intervering with my job as emerg ambulance crew.. Long story.. I had a fall which took me off the road, didnt feel confident about lifting stretchers. so into a office postion I noticed things were starting to get worse, I was given an MRI 2016 and was told ?? water on the brain..have a stent fitted and be back to work???? but it was found I had Frontal Temporel Lobe Dementia.. I was told its progressive and I need to do my bucket list as time limit about 2 - 8 years... I took medical retirement from service after 18 years, which I miss deeply..
    Now 2017/8 sent to MND consultant and possible have this attached too, "some syptoms, but waiting to see what else presents" ???
    But I believe I'm here till I go
    Take care

  9. #9
    Forum Member Marigold's Avatar
    Join Date
    May 2018
    Hi Everyone,
    I first fell (unexplained) in May 16.
    Really stiff calves all the time over winter 16-17.
    Uncomfortable feet and legs winter 17
    Struggled to play tennis in summer 17
    Couldn't walk my dogs in Autumn 17
    Fell over twice more in Winter 17.
    Saw neurologist in March 18 who diagnosed Myelitis and gave me steroids. Then diagnosed peripheral neuropathy.
    The Nerve tests and Lp in May.
    (Grrrr!) So-Diagnosis in May 18. Exactly 2 years!!
    Week of diagnosis was also the week I couldn't stand up any more so wheelchair too. Bad week, double whammy!

  10. #10
    Forum Member Marigold's Avatar
    Join Date
    May 2018
    This sounds familiar Newbie...
    Sent home in complete shock with no follow-up!
    Still waiting to see Its and physios etc after 6 weeks.

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