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Thread: Advice re symptoms please

  1. #11
    Thank you Terry, again that is very reassuring. I will ask for blood tests to be done again, as it is over 12 months since they were last checked, and intend to keep pushing until I have some answers.
    Best wishes to you too.

  2. #12
    Hello again. Firstly, I apologise for posting again but I remain terribly concerned about my ongoing symptoms and am at a loss as to where to go for help.
    My fasciculations are ever increasing, mainly throughout my left leg from foot to buttock, but also present elsewhere. My left foot has developed a burning sensation in the toes and the toes on this foot also move involuntarily. I have a constant “buzzing sensation” throughout my body and feel as if I am shaking, with visible slight trembling of arm and leg muscles at rest. My stomach is also constantly moving, rather like a wobbling jelly, and there are visible pulsations in my neck, wrists, collar bone and inner elbows I ache all over and am having a lot of back and hip pain, both sides of body. Sleep is very difficult, as the sensations are a lot more noticeable at rest, but I am aware of them constantly.
    I had a recent blood test that showed a slight Vitamin B12 deficiency and I am half way through a 2 week course of injections for this; no improvement in symptoms so far.
    I have done a home Babinski and Clonus test, as recommended earlier, and both were negative.
    My GP remains at a loss as to how to proceed, I have reread my original post and see that most of my symptoms were detailed there, but they are now more intense. I am still able to walk long distances, walk on heels and toes, do a few press-ups etc but any exertion leaves me shaking and trembling.
    I have spoken to MND connect, who advise that fasciculations for 18 months without clinical weakness would effectively rule out MND, but I have made the mistake of reading stories online that seem to contradict this.
    I do not wish to be a nuisance here, or take up your time unnecessarily, but any opinions would be very much appreciated as to whether my MND fears are valid or how I should pursue this.
    Warmest regards to you all.

  3. #13
    Forum Member Terry's Avatar
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    Hi Lizzypip;

    Sorry to hear your symptoms are worsening. Does not sound like Mnd to me. Something is defiantly wrong and I would push your GP harder if possible.

    Be nice B12 is the problem but if it's only slight????????

    Best wishes, Terry

  4. #14
    Forum Member Ellie's Avatar
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    Hi Lizzi,

    No, happily your fears of an MND are not at all valid.

    I am sorry you're going through this and, because you are anxious about the fasciculations, you are likely making them worse, so it's a vicious circle unfortunately

    Healthy people get fasciculations too and they are benign.

    I wish you all the best.

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

  5. #15
    Thank you Terry and Ellie for your kind replies, they are very much appreciated.

    I will keep going with the Vitamin B12 treatment, but think it’s unlikely to be the root cause of everything as my level was only just below normal. I will go back to my GP once the course is finished and try yet again to get some answers.

    Very best wishes to you and thanks again.

  6. #16
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    doesn't sound like MND to me, within 9 months of my first leg spasm I couldn't walk.

  7. #17
    Forum Member JAY TEE's Avatar
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    Lizzy, your bits bit like me. I was formally diagnosed MND two days after my 65th birthday May 2014. Before I had pain in my left hip that back a year. I assumed to long in front row. I was still working but struggled to get up from chair and needed walking stick. I did struggle walk up stairs but luckily our house was bungalow. I had few falls as well. I was amazed at one point I was typing and spelling mistakes, my mum made sure we all touch typists. So all down left side. Like you did keep myself fit walking the dog and swimming three times a week.
    After formal diagnosis things go. So now cannot walk and talk. As for leg flexes I was given full hospital bed and raising leg very good. I am at this point in care for ten days while my wife/carer having a holiday break in Greece with my sister. This Mary Stevens Hospice brilliant. My mates brought me a good mini iPad and the staff like my stories especially Peaky Blinders. Best wishes John

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