Announcement

Collapse
No announcement yet.

Possible diagnosis

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Ellie
    replied
    Hi Andy,

    You should have been given a full diagnosis by the Neuro who diagnosed you; shame you weren't! Still, it gives you questions for your next Clinic visit...

    PMA is a stand alone condition involving LMNs only, so you wouldn't have "a bit of PMA" alongside "UMN Dominant ALS".

    There are better sites than Wikipedia for info on MNDs... inc MNDA's full website or there's a tab at the top of this page, "Information about MND"

    A good site to browse & search is the US's National Institute of Neurological Diseases and Stroke. Here's their fact sheet on "What are MNDs?"


    https://www.ninds.nih.gov/Disorders/...ses-Fact-Sheet

    The website has lots of info, some more scientific than others. I find it very useful.

    Ellie x.

    Leave a comment:


  • nunhead_man
    replied
    Originally posted by Ellie View Post
    You need to split MNDs into sub-groups really, if talking about prognosis as there's a big difference in "expectations".................
    PS. Hope you continue with your slow progression!
    Sorry Ellie - had not responded to this - thanks

    Still struggling with acronyms so ......

    PLS = Primary Lateral Sclerosis - symptoms here may fit - https://en.wikipedia.org/wiki/Primary_lateral_sclerosis
    PBS = Progressive Bulbar Palsy - do not think I'm there
    ALS = Amyotrophic lateral sclerosis - https://en.wikipedia.org/wiki/ - seems to be what is suggested

    Then .....................

    UMN dominant ALS where UMN = upper motor neurone - found "a new amyotrophic lateral sclerosis (ALS) category named 'UMN-dominant ALS' and defined as 'due predominantly to UMN signs but with minor electromyogram (EMG) denervation or LMN signs on examination' has been proposed where LMN = lower motor neurones

    PMA = Progressive muscular atrophy

    And finally today's new word - Fasciculation - https://en.wikipedia.org/wiki/Fasciculation - which can be good - heart beats, tiredness after exercise and bad as a symptom of ALS/ UMN dominant ALS / PMA.

    So I have no idea if my off and on fasciculation in both biceps and left forearm is about tiredness after exercise of nerves burning out!

    And noproblems with shoulders, neck legs etc as yet.

    So I think I've got UMN dominant ALS with some PMA

    Seems to be slow burn but who knows.

    Best to all

    Andy

    Leave a comment:


  • nunhead_man
    replied
    Thanks Barry - best reference to riluzole is dear old Wikipedia - https://en.wikipedia.org/wiki/Riluzole

    This in turn takes me to http://onlinelibrary.wiley.com/doi/1...01447.pub3/pdf which goes back to 2012 and contains the three months extra claim and "emerging evidence that chronic glutamate excitotoxicity may accumulate to toxic levels and contribute to neuronal death in ALS provided a rational basis for undertaking a clinical trial with riluzole , a drug with complex effects, but which appears to block the presynaptic release of glutamate ( Rothstein 1996)"

    I have a thought about the three month average thing - someone with their head in a fridge and feet in an oven is on average comfortable. And another in that that deciding when whichever MDN variant you have actually started or gauging the current stage of it is not an exact science.

    Thinking on as ‘twere

    Leave a comment:


  • Barry52
    replied
    Originally posted by nunhead_man View Post
    Yeah - bit like this - http://www.businessballs.com/elisabe...s_of_grief.htm



    We will see re slow burn - if and when something else turns off to add to my left hand / arrm issues I'll have some indication

    And re riluzole do you have a references on effect / outcomes?

    Best

    Andy
    Andy,

    The link you sent raises a number of issues about how we all deal with life when given a diagnosis of MND. EKR's 5 stages of grief are interesting and I can attest to feeling some of them after my initial diagnosis.

    I can't speak from personal experience about riluzole as I refused it when the medics said it is shown to extend life by 3 months but there are others on here who believe in the benefits and since I take some supplements which I believe help me who would want to stop medication unless it has an adverse effect.

    Best wishes,
    Barry

    Leave a comment:


  • Ellie
    replied
    Hi Andy,

    You need to split MNDs into sub-groups really, if talking about prognosis as there's a big difference in "expectations".

    PLS can have a near-normal life expectancy, if it stays as PLS. But at the other other end, Progressive Bulbar Palsy has a very short life expectancy. (Of course there are always exceptions)
    Then you have ALS - which can be limb or bulbar onset, each with different life expectancies - UMN dominant ALS, PMA, all with their own idiosyncrasies!

    I'm trying to say if people say "I'm 4yrs post diagnosis and climbed Snowdonia last week" or "my dad died after 11mos", it's best to know from where they started before comparing yourself to them. Otherwise it's apples and oranges.

    Ellie x.

    PS. Hope you continue with your slow progression!

    Leave a comment:


  • nunhead_man
    replied
    Originally posted by Barry52 View Post
    Shortly after my diagnosis 5 years ago I did a lot of research because like you I wanted answers and a cure.
    Yeah - bit like this - http://www.businessballs.com/elisabe...s_of_grief.htm

    Originally posted by Barry52 View Post
    If like me, in your words are "a slow burn" then I hope we get a cure or at least something better than riluzole
    We will see re slow burn - if and when something else turns off to add to my left hand / arrm issues I'll have some indication

    And re riluzole do you have a references on effect / outcomes?

    Best

    Andy

    Leave a comment:


  • Barry52
    replied
    Hi Andy,

    The professionals have been searching for a link for many years and there are too many variables. Likewise with using data about life span as MND affects us all in different ways. Shortly after my diagnosis 5 years ago I did a lot of research because like you I wanted answers and a cure. I soon realised that whilst I want to be appraised of the latest treatments I still have some personal goals so I turned my attention to these. As I slow down it becomes more difficult but despite the challenges of living with MND I enjoy life. I gave up pondering what ifs.

    If like me, in your words are "a slow burn" then I hope we get a cure or at least something better than riluzole.

    Best wishes,
    Barry

    Leave a comment:


  • Guest's Avatar
    Guest replied
    My husband was a footballer and a drummer to with a lot of fillings and I have read mercury and very active people is a possible link.........

    Leave a comment:


  • nunhead_man
    replied
    Hmmm - still poking around - see the mercury suggestions linked to teeth filings etc

    And wondering about life expectancy - seems I'm quite slow burn and understand this is asking how long is a piece of string but ....

    What is the range here?

    Best

    Andy

    Leave a comment:


  • nunhead_man
    replied
    Thanks both - interesting

    Leave a comment:


  • Ali_Chris
    replied
    My Neuro said that a lot of European football midfielders get this condition. Its suspected that they run a lot and hence the exercise. i also used to be very active.

    Leave a comment:


  • Terry
    replied
    It is quite common in people that do a lot of exercise.

    Terry

    Leave a comment:


  • nunhead_man
    replied
    To add I'm now on Riluzole - see other post

    Also interesting to see post on link with fitness - I used to be very fit - first category cycle racing licence and many miles a month - resting pulse rate 40 or less etc. etc. - lots of high mountain cycle touring - I still do 100miles per week doddling around work etc. given I can hold one type of handlebars but not others - have now amended my fast bike to suit my hand disability

    I think I need to keep going with my history – I’m not very good about controlling weight with diet.

    My doc at Kings was diffident about my question about carrying on with gym etc. - obviously muscles with no nerve feed do not work but the others still need working and he said carry on as normal - and my normal is a bit unusual for my age.

    Tying this in to a vague understanding that MDN damage is caused by some type of over excitation – so perhaps “over using” yourself physically has implications?

    Leave a comment:


  • nunhead_man
    replied
    Hi Ellie

    Originally posted by Ellie View Post
    INCS is used alongside an EMG to differentiate a nerve disorder from a muscle disorder. NCS detects a problem with the nerve whereas an EMG detects whether the muscle is functioning properly in response to the nerve's stimulus
    Ah! OK - I presume the bods I've been seeing can differentiate a nerve problem from a muscle one - otherwise the suggestion would be errr multiple sclerosis and not motor neurone disease?

    Leave a comment:


  • Ellie
    replied
    In simple terms: NCS is used alongside an EMG to differentiate a nerve disorder from a muscle disorder. NCS detects a problem with the nerve whereas an EMG detects whether the muscle is functioning properly in response to the nerve's stimulus.

    If you want a more scientific and technical explanation, I'm sure I've an article on it somewhere, let me know.

    Ellie x.

    Leave a comment:

Working...
X