Results 1 to 9 of 9

Thread: New member of the forum

  1. #1
    Forum Member
    Join Date
    Sep 2017
    Posts
    28

    New member of the forum

    I am new to the forum although I have already posted a few replies. I have been my husband's Carer for over three years. He is an amputee suffering kidney disease and severe COPD. He is mostly bedridden and in Palliative Care and we are supported by our local hospice. I was unexpectedly diagnosed with MND six weeks ago following a EMG for what had been diagnosed as carpal tunnel in my right hand. I had also found walking difficult since Christmastime but told it was probably a trapped nerve in my leg due to a fall I had or a lower-back problem. My diagnosis was a big shock and I wonder how much longer I will be able to care for my husband although I do now have a Carer for him each morning which is a great help. It has been slow going getting any referrals for myself to the local multi-discipliary team. I have found that my local hospital only has general neurologists and they do not seem to have a protocol in place for newly diagnosed MND patients. Neither do they have a MND nurse I can discuss things with. I was baselined by the Respiratory Nurse last Friday and she said the result was very good which was reassuring and I was able to have a long chat about my prognosis. I have heard from no-one else in the MDT. I did have an appointment with a different consultant last week and told him that my walking was worse and he said my legs were becoming spastic. He is going to send me a prescription this week but I am unsure what it is until it arrives. He made no mention of any side-effects just that it need to be given in very small doses 3X a day.. I have been feeling a bit isolated but reading comments on this forum has given me some reassurance that my life is not over and more insight into what I am going to face.

  2. #2
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Posts
    1,702
    Gosh Ann, you've lots to contend with. Sorry to hear of your husband's health problems; that alone is traumatic enough without your own diagnosis. I'm sorry for you both.

    Are you near a hospital with an MND Clinic? It's got the best setup for us, with the MDT available each visit. Contact the MND Connect Helpline - see tab on the top of this page - for help with Community Services referrals. Also, have you told the hospice? Their Physios and OTs can be good (which you probably know) can you be referred there too?

    The antispasmodic med is likely to be Baclofen, which is started on a low dose and increased until an effective dose is attained.

    All the best Ann.

    Love Ellie.
    ​Diagnosed 03/2007. Limb onset (arm) sporadic ALS/MND.

  3. #3
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Location
    UK
    Posts
    6,092
    Hi Ann;

    Sorry to hear of how things are with your situation. I can only echo all of what Ellie says. What county are you in?

    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 keeps 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 ccinjersey's Avatar
    Join Date
    Sep 2012
    Location
    USA
    Posts
    2,904
    Welcome Ann

    Sorry for your diagnosis. You have come to the right place for much support, advice, knowledge, and friendship by a group of wonderful people that truly understand what you are experiencing.

    Wishing you, and your husband all the best.

    CCxox
    .

  5. #5
    Forum Member
    Join Date
    Sep 2017
    Posts
    28
    I live in Surrey.
    Last edited by Annb; 12th September 2017 at 11:13. Reason: Error

  6. #6
    Forum Member
    Join Date
    Sep 2017
    Posts
    28
    Thank you Ellie. I am waiting to be referred to the Hospice physio.

  7. #7
    Forum Member
    Join Date
    Dec 2013
    Location
    Surrey
    Posts
    302
    Aanb:

    I live in Guildford and the team around me has been excellent. Where do you live? My hospice and care team are based at Royal Surrey Hospital. Local Neurology were out of their depth. I signed on with the specialist Motor Nerve Clinic at Kings college Hospital under Prof. Chris Shaw. They see me 6 monthly. They are superb.
    You also need an MNDA visitor to advise and connect you to your team. Phone MNDA and connect to a MNDA Visitor.
    The medication is probably Baclofen. I take it without side-effects and it helped my spasticity significantly.
    All these bits helped me. Did not change my fate but helped me manage it more effectively.

    Charles

  8. #8
    Forum Member
    Join Date
    Sep 2017
    Posts
    28
    Thank you Charles. I have contacted the National Hospital for Neurology in Queens Square in London and am seeing a specialist there next week. I will feel more secure being advised by an MND Specialist. I have also found that the generalist neurologists at my local hospital lacking and wish I had been referred to a centre such as Guildford as it is not far away from me. After reading about the side-effects of Baclofen I was feeling apprehensive, but i have found your comment reassuring and will try it. Thank you!

  9. #9
    Forum Member
    Join Date
    Dec 2013
    Location
    Surrey
    Posts
    302
    Apologies for being direct: I know the Neurology Hospital. They are excellent but deal with general neurology. You should, in my opinion, go to a specialist MND Centre. Kings College Motor Nerve Clinic only deal with MND. They are a dedicated treatment and research centre. That is why I went there. They will listen to your history and take a 'scientific' view on your progression etc.
    Charles

Posting Permissions

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