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  • Amanda and Profile picture of MaryMary are now friends 1 month, 2 weeks ago

  • Jay and Profile picture of MaryMary are now friends 1 month, 3 weeks ago

  • Hi all, by the way I really feel for you mikael as I am going on 18 months nó diagnóis it’s like a living nitemare not knowing what is happening its madness in this day and age u should have to go through all this, I have muscle wastage on right hand and bad pain have been prescribed pregabalin for pain heavy feeling in my legs have had 3 emg a…[Read more]

  • Yes this i am not sure the first neuro didn’t seem to experienced and she referred the 2nd one when I showed him my hand he said well u don’t have weakness it’s like he was supporting her his report went on about my emotional state more I felt my reflexes etc were all normal he has sent report to professor hence not giving me much time as from…[Read more]

  • Hi, I just wanted to add to my trying find a diagnosis story! Here I am nearly a year with symtoms wasted muscle on hand now looks on wrist can’t write without pain legs and feet that fill like anti freeze has been injected into them I have now see 3 neurologists and had 2 emgs been to my doctor numerous times given anti anxiety medication offered…[Read more]

    • Mary,
      I am so sorry that you are having difficulty getting appropriate medical help. I would be stressed and frustrated too! Have the doctors alluded to any other possibilities or discussed why they weren’t ruling ALS in/out?

  • Hi Amanda thanks for asking well clinical exam was fine I had my hand looked at the neurologist doesn’t feel it is mnd as I have had 2 emg which show abnormality in just the 1 muscle he said it would b NY now its nearly 8 months more widespread he think I damaged muscle but no answer what to do plus he saw the muscle waste I am abit in limbo do I…[Read more]

    • Mary,
      That sounds positive, but it doesn’t sound like you have received definitive answers yet. The feeling of being in limbo must be frustrating! Please keep us posted as you continue with your doctor visits.

  • Dagmar Munn and Profile picture of MaryMary are now friends 1 year, 4 months ago

  • Hi all I has my appt with professor orla hardiman on Thursday she gave me a thorough clinical exam unfortunately I was abit overawed and didn’t ask her enough questions I told her about atrophy in hand numbness in leg and pain in other hand forgot to mention cramps anyway she doesn’t think I have Als but no real answer to my medical problems she…[Read more]

  • Mary posted a new activity comment 1 year, 5 months ago

    I would have liked to have shared article but can’t work out how to do it anyway I do feel there are a large amount of people getting als who do sports I suppose I am thinking what did I do to deserve this

  • Mary posted a new activity comment 1 year, 5 months ago

    The article I read I can’t seem to share only works on my contacts on phone will b interested to see your link dagmar

    • I would have liked to have shared article but can’t work out how to do it anyway I do feel there are a large amount of people getting als who do sports I suppose I am thinking what did I do to deserve this

    • I just posted the webinar link to the Research Topics area.

  • Mary posted a new activity comment 1 year, 5 months ago

    Hi dagmar, I read a v interesting article as well ré how many footballers had come done with als they were doing about too much glutamate in the brain which gets heightened during exercise and can’t b processed and destroys the motor neurons I may not have that to exact wording but I would need to send on article I just v found mist things I have…[Read more]

    • The build up of glutamate in the brain – – or the body’s inability to daily flush glutamate out of the brain has been identified as causing our motor neurons to die off. That is why the medication Riluzole is prescribed – – it helps flush out the glutamate. Glutamate is also called glutamic acid, is one of the most abundant amino acids in the…[Read more]

      • The article I read I can’t seem to share only works on my contacts on phone will b interested to see your link dagmar

        • I would have liked to have shared article but can’t work out how to do it anyway I do feel there are a large amount of people getting als who do sports I suppose I am thinking what did I do to deserve this

        • I just posted the webinar link to the Research Topics area.

  • Mary posted an update 1 year, 5 months ago

    Hello everyone while doing alot of research on ALS one thing I have noticed alot of people who have this disease seem to have been v healthy before and exercised alot, my question is do you think hard exercise is a factor in getting this condition, I know I had started running more than I had ever done just wondered if anyone else was athletic…[Read more]

    • Mary, It’s only human to try to figure out what caused ALS in our bodies – – but even the medical experts haven’t figured out the cause …yet. I’d be interested in what other members think about your question…

      My observation is that the athletes with ALS receive more media attention (because it’s such a “tragedy”) but tea-totallers and…[Read more]

      • Hi dagmar, I read a v interesting article as well ré how many footballers had come done with als they were doing about too much glutamate in the brain which gets heightened during exercise and can’t b processed and destroys the motor neurons I may not have that to exact wording but I would need to send on article I just v found mist things I have…[Read more]

        • The build up of glutamate in the brain – – or the body’s inability to daily flush glutamate out of the brain has been identified as causing our motor neurons to die off. That is why the medication Riluzole is prescribed – – it helps flush out the glutamate. Glutamate is also called glutamic acid, is one of the most abundant amino acids in the…[Read more]

          • The article I read I can’t seem to share only works on my contacts on phone will b interested to see your link dagmar

            • I would have liked to have shared article but can’t work out how to do it anyway I do feel there are a large amount of people getting als who do sports I suppose I am thinking what did I do to deserve this

            • I just posted the webinar link to the Research Topics area.

  • Mary posted a new activity comment 1 year, 5 months ago

    Thankyou vert insightful I just thought u were diagnosed in 2010 wow 9 years that’s amazing gives me hope dagmar

  • Mary posted a new activity comment 1 year, 5 months ago

    Thanks dagmar I am not that good with computer tech I am having a bad day see neurologist on Thurs nó one seems to no what to say anymore

  • Mary posted a new activity comment 1 year, 5 months ago

    Thanks Amanda I wasn’t able to reply to your last conversation to me, I am terrified to b honest having accpunture to try and relax but v difficult worried about the future and impact on my lovely daughter thankyou for your message it came at a appropriate time, mary

  • Thankyou dagmar, that is so funny reminds me of me with the coconut can’t bear the taste really 😕I am glad to have found this forum thankyou

  • Thankyou for the good advice, the neurologist I see end of month is one of the best she is tied in with als research etc it all seems so daunting I am taking cod liver oil and vit C and b at the moment, I read about someone taking copious amounts of coconut oil and bought same made me heave better as massage oil! Mary

  • Hi I have seen advertised a herbal concoction for reversal of als company is called herbal something can’t remember now! Also vitamins what r all your thoughts, mary

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