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Thread: Another one in Limbo land

  1. #1
    Sammbie
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    Another one in Limbo land

    My journey started back in July 2016, originally diagnosed as a cricked neck, then a pinched nerve and now potentially something else. After 4 months of repeat visits to my GP I was eventually referred to a neurologist. I had an MRI of brain and neck, the findings in Jan were mild stenosis and an irritated nerve.

    Whilst waiting for my follow up appointment other things started to happen, mostly left leg weakness and a little atrophy of the calf. My GP was really concerned and had me seen sooner that the follow up appointment.

    The findings were, wasting of both thenar eminences, weakness of left finger and abduction and grip. Mild left lower limb weakness on the hip and knee flexion and knee extension. Reflexes were brisk, right planter response was flexor and left was mute (don't know if it matters but my gp disputes this as my toes all flare up and out), GP also did a finger flick test (Hoffman?) And my thumbs and index finger both go down on both hands. My neurologist hasn't indicated what it can be but has ruled out MS and that my bloods were good.

    My gp has given me a slight inkling as it various possibilities and MND was the one that stuck. He mentioned 'split hand' and when I've looked online my hands look the same. Since my appointment 3 weeks ago, I have more atrophy on the calf and keep going over on my left heel. Taken to wearing boots to prevent spraining myself.

    I'm off sick from work, they have been non supportive of my appointments and on my last one I got a nasty letter from HR about my absences. I've not taken sick, just 2 appointments, one for ptsd counseling (another story) and my neurology appointment. After OH told me I need to go to both.. go figure!

    I have my EMG on April 1St, so not too long too wait but I am honestly scared. I doubt I won't get the results until my next follow up some months away. My body twitches all the time and my ring and middle finger on my left hand won't spread apart and I'm losing general mass on my thighs. (I used to push 150kg, I was very proud of my defined legs)

    I'm a single mom of 3, 12 and under and dad is not allowed to be around any of us, I have virtually no support and with things progressing quickly I'm becoming quite worried about what my future holds for me and my children.

    Yours,

    Samantha

  2. #2
    Forum Member Ellie's Avatar
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    Hi Samantha,

    While I am sympathetic to your situation and truly hope you don’t have an MND, you’ve asked the same question (albeit with more information) on the “Do I have ALS?” section of the U.S. forum and got answers.

    Of course you can also ask here, but please bear in mind:
    We won’t be able to tell you anything different to the answers you already got.
    The majority of users on this forum have an MND, rather than care for someone who has an MND, so typing is usually a difficult and labourious task for us.

    I can add nothing more to the replies already given to you on the U.S. forum, but wish you well for your EMG in 2 weeks.

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

  3. #3
    Sammbie
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    Hi Ellie, yes I did! I am waiting for tests and feeling really apprehensive during the waits for the appointments. I thought I would post here because I an in the UK and this group is.

    I'm sorry if I offended, I'm just a mom of 3 trying to cope with what's going on and reaching out for support. I'm sorry if that's wrong.

    S

  4. #4
    Sammbie
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    I shall go worry alone, I didn't realise I can't reach out for understanding. I hope for mine and my children's sake it was a worry over nothing.

    S

  5. #5
    Forum Member Ellie's Avatar
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    That is not what I said Samantha and you know that.

    Read my post again.

    With respect,
    Ellie.
    ​Diagnosed 03/2007. Limb onset (arm) sporadic ALS/MND.

  6. #6
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    Quote Originally Posted by Sammbie View Post
    I shall go worry alone, I didn't realise I can't reach out for understanding. I hope for mine and my children's sake it was a worry over nothing.

    S
    Thats not what is being said. Its just you have posted the questions elsewhere and got answers. I type with my hands and its difficult with shaky hands but not as bad as eye gaze so have some understanding please.

    Until you have a diagnoses you are in limbo land. But my heart goes out to you facing this alone. Please dont be offended. Chris.

  7. #7
    Sammbie
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    Ellie,

    I'm sorry, I'm just so touchy at the moment, a mixture of worry and PTSD due to other things going on. I really do respect and appreciate the difficulty everyone is facing here. I did take time to read through a few posts and saw that in this group people in my predicament were supported and signposted, so I thought it may be OK to post.

    I don't know what it is that I have but I know it's progressing and quickly. Believe it or not I'm the strong one everyone turns too in my family. They can see my decline and I just joke it off. But I am scared, not so much of is happening to me but how that will affect my children in the long term.

    I have absolutely no-one to share these fears with except my GP. He is fantastic and has sped up the process so far. I also understand there is huge numbers of people who seem to be convinced they have MND, I'm trying my hardest not to be one of them. I'm truly just trying to reach out for a little support and understanding.

    Apologies again for being so reactive in my previous reply.

    Sam

  8. #8
    Sammbie
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    Chris, I'm sorry too. I totally understand what you mean. I did say that I've already lost function of two fingers and whilst that's incomparable to some, I really do appreciate it's hard. I guess if I had a stronger support system I wouldn't be reaching out.

    I will try to refrain from posting, as I know it must be frustrating for all of you with your diagnosis to have people like me whining on.

    Limbo land is as it sounds, a place of uncertainty, a place you can't make decisions and most definitely isolating.

    Thanks for taking your time to reply today.

    Sam

  9. #9
    Forum Member Ellie's Avatar
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    Thank you Samantha.

    I really meant it when I said I hope, whatever you may have, it isn't an MND and wish you good EMG results.

    All the best,
    Ellie x.
    ​Diagnosed 03/2007. Limb onset (arm) sporadic ALS/MND.

  10. #10
    Forum Member Barry52's Avatar
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    Hello Sam,

    I'm sorry to hear of your situation as no one likes to be left not knowing why their body is not functioning well. MND often takes months and in some cases years to diagnose as there is no one test to prove it and everything else is ruled out before conclusion. I hope your further tests rule out MND.

    Best wishes,
    Barry
    Life is a journey, not a destination.

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