Page 1 of 2 12 LastLast
Results 1 to 10 of 19

Thread: Newly Diagnosed

  1. #1
    Forum Member
    Join Date
    Dec 2017
    Location
    NORTHAMPTON
    Posts
    25

    Newly Diagnosed

    Hello to everyone,
    I was diagnosed with MND 14th December 2017, not the best Christmas present I've ever been given... It's probably Familial as my younger brother was diagnosed 5 years ago now.My first question to everyone is regarding pain, I thought MND would be pain free but my experience with some spectacular cramps and back and shoulder pain is not what I expected at all. Does anyone else get pain and if you do does any kind of medication other than the usual over the counter painkillers help, and has anyone had physiotherapy that has helped,
    thanks to you all,
    Karl

  2. #2
    Forum Member kevin's Avatar
    Join Date
    May 2013
    Location
    chorley lancashire
    Posts
    163
    Hi Karl
    I had cramps about two years ago maybe 3 anyway long time since . I take 350 mg tablet of magnesium everyday and no more cramp . A word of warning they act as laxitives . Good luck mate we are all different hope it works for you

  3. #3
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Location
    UK
    Posts
    7,126
    Hi Karl and welcome to the forum;

    Sorry to hear about your brother and of your so recent diagnoses and a probably very bad Christmas.

    Spectacular cramps are quite common and they can be extremely painful. I don't think that they are so common in the shoulder and back area, they are often in lower legs and I have them in my fingers/hands sometimes.

    Try not to over stress the areas affected but try to get them put through their full range of movement. Something like Baclofen might help to reduce any tension (spatisity) out of the muscles and quinine might reduce there frequency.

    Physiotherapy and massage will help. Get to your doctor and see what he says about the above drugs and other pain medication.

    Also your specialist or neuro nurse should be able to help with advice and treatment.

    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.

  4. #4
    Forum Member
    Join Date
    Dec 2017
    Location
    NORTHAMPTON
    Posts
    25
    Thanks Kevin,
    I will give this a go, been trying bananas for potassium and these have similar laxative effect !!

  5. #5
    Forum Member
    Join Date
    Dec 2017
    Location
    NORTHAMPTON
    Posts
    25
    Thanks Terry,
    the worse cramps for me are abdominal and hand cramps which can strike out of the blue, seeing the GP tomorrow so will ask about Baclofen. I am trying cold pressed coconut oil as there are reports on the internet that this can help with all symptoms...

  6. #6
    Forum Member
    Join Date
    Sep 2012
    Location
    USA
    Posts
    3,183
    Welcome Karl

    Sorry for your recent diagnosis, and your brother's as well. You will find a lot of support, knowledge, and advice from all the wonderful folks on this forum.

    Wishing you, and your family all the best in the days ahead.

    CCxox
    .

  7. #7
    Forum Member Barry52's Avatar
    Join Date
    Mar 2012
    Location
    Newark on Trent
    Posts
    1,954
    Hello and welcome Karl.

    I don’t think abdominal pain is linked to MND so I would check with your GP for something else. Muscular pain is quite common and as others have said, can be treated.

    I also take coconut oil and whilst the benefits are anecdotal I believe it helps the immune system and it certainly improves bowel movement which can cause trouble as we become more sedentary.

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

  8. #8
    Forum Member Bird's Avatar
    Join Date
    Nov 2017
    Location
    Southampton
    Posts
    34
    hello Karl
    im a month and a half in and havent had much cramp ,only a little in my feet.
    my arms and hands are my problem.
    lots of advice on here

    heidi

  9. #9
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Location
    Dublin
    Posts
    2,600
    Hi Karl,

    Sorry you find yourself joining the forum. I think Familial ALS/MND is the cruelest form of the disease but it's also the area in which the greatest strides for a cure are being made.

    In order to know which painkillers are best for you, it's important to know what is actually causing your pain - neuropathic, musculoskeletal, spasm, spasticity, stress etc. - each have different types of medication. Similarly, physiotherapy will work better on some pain types more than others, as will massage.

    What areas are affected by the ALS/MND?

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

  10. #10
    Forum Member
    Join Date
    Dec 2017
    Location
    NORTHAMPTON
    Posts
    25
    Hi Ellie,
    At the moment its a little bit of everything really, symptoms started with fasciculations 4 years ago and a feeling of weakness in my left arm, then I had to stop playing tennis and badminton because of what i thought was a back problem about a year ago but was probably core weakness, at the moment i can walk around ok with a stick (for confidence more than anything) but stairs are difficult as is getting arms overhead and getting out of a low chair. Interestingly the symptoms i have are different to my brother and to my grandad (from what i have been told) Fasciculations are still the single most annoying symptom...
    Karl

Posting Permissions

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