Page 4 of 5 FirstFirst ... 2345 LastLast
Results 31 to 40 of 48

Thread: Not diagnosed but concerned

  1. #31
    Forum Member
    Join Date
    Jan 2019
    Location
    Secret
    Posts
    63
    I have to go for a nap now Andy you have worn me out

  2. #32
    Forum Member
    Join Date
    Jan 2018
    Posts
    34
    Sorry Jon -speak soon

  3. #33
    Forum Member
    Join Date
    Jan 2018
    Posts
    34
    Ok so I haven't posted in a fair while but symptoms are continuing namely the all over Fasiculations and I am convinced still losing muscle mass especially on arms and legs as well as hands and feet but no one else can see it -I have just been for a 6 mile walk which took just over 2 hours -would I still be able to do this if two and a half years into this and from when symptoms first started -I am going off my head with this but my Wife says it wouldn't be possible to walk this far 2.5 years after first symptom -thoughts please and apologies if my post annoys anyone as its not my intention

  4. #34
    Forum Member
    Join Date
    Mar 2019
    Posts
    38
    I have had symptoms for 7 months wish I New what causing them, am going to keep going until do, personally if u had mnd I don't think u could walk that far after 2 and half years

  5. #35
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Location
    Dublin
    Posts
    3,070
    Hi Andy,

    At least 4 Neurologists have examined you and told you that you do not have ALS/MND.

    You have had multiple EMGs, none of which showed problems suggestive of ALS/MND.

    You said yourself you are "convinced" you have it, so really at this stage I don't see how I, nor anyone else except a psychologist, could possibly compete with your deeply held conviction ...

    Best wishes.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  6. #36
    Forum Member
    Join Date
    Mar 2019
    Posts
    38
    I would of thought a neurologist could def confirm muscle loss i have in hand which was confirmed I have had 2 emg the 2nd one showing chronic neurogenic change in form of high amp motor units red firing frequency which I think doesn't sound right but even I and I no I am highly anxious would of stopped after 2 years with no real progression

  7. #37
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Location
    UK
    Posts
    7,594
    Hi Andy ;

    Your wife is right, if you have limb onset ALS you would not be walking much at all.

    I have a slow type of Mnd and I couldn't walk unaided after two years.

    Mnd has many symptoms that are also prevelent in other decreases and problems like vitamin deficiencies etc.

    Please take notice of Elle's comments, she is very knowledgeable, unlike me.

    Love Terry

  8. #38
    Forum Member
    Join Date
    Jan 2018
    Posts
    34
    I have had muscle loss confirmed in left calf by 4th Neurologist and like yourself on my 2nd EMG it also showed Chronic neurogenic changes in the area when I have lost muscle but I first noticed was smaller in July 2017 nearly two years ago and having walked 6 miles today I wanted to know what peoples thoughts were after having symptoms for 2.5 years in total could I walk that kind of distance if had MND and the timescale -I seem to go round and round in circles -I have also bodywide twitching which started in April 2017 -I keep trying to tell myself that the timescale is on my side but I am not convinced -the last Neurologist I saw said that after 2 and half years if MND something would have failed by now!

  9. #39
    Forum Member
    Join Date
    Jan 2018
    Posts
    34
    Thank you Terry -this all started with pain in lower back around Xmas 2016 -the twitching started in April 2017 and my legs feel weaker but as my wife says 2 and half years and still able to walk 6 miles wouldn't be possible even with slow onset surely .

  10. #40
    Forum Member
    Join Date
    Jan 2018
    Posts
    34
    Ellie -thank you again for your words -I so want to be convinced but question how can I walk 6 miles two and half years after 1st symptom and still think its MND -my Neurologist said that after this period of time something would have failed by now -I so want to believe him but still concerned but do think timescale on my side,

    Thank you again for your words

    Andy x

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •