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Thread: Another one in Limbo land

  1. #11
    Forum Member
    Join Date
    Feb 2016

    My heart goes out to you at a hugely difficult time in your life. The reality of what I have learned watching my sister cope with this dreadful disease, is that there are not a lot of answers out there, especially at the beginning of the journey. It is hard to even get a firm, diagnosis and each person's progression is different from another I think it is very important to take things day by day and to build a circle of support. I am sure your head is all over the place but you do need to try and take a deep breath Please contact your local MNDA support group and ask your GP about counselling. There are so many lovely people out there ready to give you love, help and support.

  2. #12
    Forum Member
    Join Date
    Sep 2012
    Welcome Sammbie

    I sincerely hope you receive a different diagnosis then mnd, and get the answers you need by the medical profession without having to wait months for it.

    It must be extremely difficult not to have any adult support around you during this time, but you have found the right place much support, advice, knowledge, comfort and friendship by a group of wonderful people that truly understand what your experiencing. Wishing you, and your family all the best in the days ahead.


  3. #13
    Thank you everyone for their kind words and support. I try not to dwell, in fact, I don't have much time to dwell on what is happening to my body too much. It's really in those rare quiet moments when I sit down and pay attention to the trembling muscles and in particular my hand.

    There are other physical symptoms such as shrinking legs, but, other than the calf's they are symmetrical and a rather skinny looking left arm, lost bicep, triceps and forearm muscles. But I don't really look at my legs and arms too much but the hand is hard to avoid. That's when it becomes real to me.

    I go about my day trying to be optimistic and when faced with dropping dinner plates, unable to open jars, or not being able to carry the laundry basket upstairs or the limp that turns into cramp on the school run, I've been convincing myself it could be any number of things. But when I sit down, I feel and see the twitches and then I look at the hand and I know something is happening. I can't ignore that the thumb-side of my hand has gone, just wrinkles were there was once muscle. Friday night my tongue felt strange, I've had this feeling many times before and have always put it down to eating something it didn't like.. plus I hate looking at my tongue, I have a geographical tongue and it's not very pretty. But after several hours and finding it uncomfortable to talk I did and i could see it moving.

    And although my EMG is only a couple of weeks away and it can't come soon enough.

    My work are digging into my medical issues, I don't think they believe me. It has become so bad that I'm off sick at the moment but not for my physical ailments but because of the amount of pressure and no support when it comes to taking time for my appointments. I also have ptsd due to being stalked and harassed for a number of years for which I was in counseling for. It's so bad, it's coming from the top and after 3 months of been ostracised and having emails sent from management to my personal email because I had to take a urgent neurologist appointment and OH refusing to make an adjustment because I was fatiguing by the end of the day, I broke down. I couldn't put myself in that environment. Plus I know that kind of flight or fight stress can be good for 'neurological issues (that's the only diagnosis the doctor can give them).

    So in these moments before the children wake up I realise I'm truly in Limbo. I have fought so hard over the last few years to keep me and my children safe, I can't imagine a worse fate for us. I have insurmountable strength to overcome anything life throws at us but somewhere at the recess of my mind that nagging suppressed thought is there. What if it is? Until I know, I'm stuck but on a positive most of the time I'm happy to be busy with my mom duties.

    Sorry I put so much but I don't share my worries with my loved ones, rather I'm telling them not to worry.


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