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  • Andrew
    replied
    Originally posted by Ellie View Post
    If you're asking which meds I use specifically forr spasticity, I take Baclofen and, to a lesser extent, Tizanidine, both of which I find effective.

    The other daily meds I take are for symptom control - saliva, restless legs, as well as the above - and I also take Riluzole, then, to protect the lining of my stomach from all those meds, I take Lansoprazole.

    Thank you Ellie

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  • Ellie
    replied
    If you're asking which meds I use specifically forr spasticity, I take Baclofen and, to a lesser extent, Tizanidine, both of which I find effective.

    The other daily meds I take are for symptom control - saliva, restless legs, as well as the above - and I also take Riluzole, then, to protect the lining of my stomach from all those meds, I take Lansoprazole.

    Leave a comment:


  • Andrew
    replied
    Originally posted by Ellie View Post
    Needle accupuncture to decrease muscle tone in lower legs and to increase shoulder mobility - got a few days improvement before muscle tone reverted to high so, after an expensive 3 months, I stopped going, started on meds and never looked back. 😏
    Thanks Ellie. What meds were they and which do you think gave you the best results?.

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  • Ellie
    replied
    Needle accupuncture to decrease muscle tone in lower legs and to increase shoulder mobility - got a few days improvement before muscle tone reverted to high so, after an expensive 3 months, I stopped going, started on meds and never looked back. 😏

    Leave a comment:


  • Andrew
    replied
    Originally posted by Ellie View Post
    Andrew I had acupuncture for spasticity, its benefits barely lasted the week between sessions, and it had zero impact on progression, not that I expected any...
    Thanks Ellie. Please could you let me know what specifically the benefits were that you experienced and what sort of Accupuncture did you try?.

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  • Ellie
    replied
    Andrew I had acupuncture for spasticity, its benefits barely lasted the week between sessions, and it had zero impact on progression, not that I expected any...

    Leave a comment:


  • Andrew
    replied
    Originally posted by Ellie View Post
    Andrew If there are podcasts attached to those 3 completed review, take a listen to them. I always find them very interesting. xx
    Hi Elle

    Yes I too found the podcasts really interesting. I have since found some great threads on here particularly about the possibilities of cannabis slowing progression and relieving the symptoms of MND. Some of the posts were quite old so I am hoping hoping there may be some current users on the forum who could share their own experiences,

    Similarly interested if anyone has experimented with Accupuncture or the gluten free diet.

    Leave a comment:


  • Ellie
    replied
    Andrew If there are podcasts attached to those 3 completed review, take a listen to them. I always find them very interesting. xx

    Leave a comment:


  • Andrew
    replied
    I have been looking at the https://www.alsuntangled.com/ site referenced in various posts on this string.

    The following off label treatments caught my attention with a grade A in the Case section.

    Has anyone tried any of the following and if so were there any benefits.?


    Accupuncture
    Cannabis/CBD oil
    Gluten free diet.

    Many thanks

    Leave a comment:


  • Littlesister
    replied
    To Graham. Thank you for your reply. It makes absolute sense, to me, to have as much information as possible although I hadn't thought about it in terms of unknowns and prognosis. I will add it to my list of requests and discussions with my brothers consultant.
    Again thank you for your time.
    Little Sister

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  • Graham
    replied
    It is true that there are a few interesting trials going on in the NHS currently and knowledge about MND is approaching a tipping point, another year or five or more...

    The DNA test is the gene test and the whole genome test will pick up all bad genes, including currently unknown MND types.

    It also informs of prognosis and care needs, eg C9ORF72 may lead to dementia.

    Leave a comment:


  • Littlesister
    replied
    For Graham Gordan1111 Ellie I hope this reply reaches you all. I was looking for a reply button to each of you, but it doesn't seem to work like that.
    So firstly, thank you all so much for taking the time and making the effort to reply. It means alot to me.

    Graham your reply
    You definitely need to figure out what MND bro has, because there are trials going on now that bro may be able to enrol for. A whole genome test is the best.
    I have fathomed out about the various types of MND and that certain trials target certain types, but I don't know what my brother has and I don't think he does either. It's on the list as a question for the consultant. My brother said he was having some kind of DNA test I think but I don't think it was a "whole genome test". Can you tell me what the reason for needing it would be? I can understand if you want to find out if you're likely to get a disease, but for someone with MND what could the results be used for?
    As for 15+ years - astonishing! And good to hear.

    Gordan1111 your reply
    I agree any final decision about taking or testing a drug or treatment should be yours. The illegal I'm guessing could be cannabis which you read about for medical use. That's another line of research.

    Ellie your reply
    Thank you for that insight. It's really helpful to have cons as well as any pros. I can't believe how hard it is to find information. I have written to both MND Association and the MND Scotland Association and suggested they compile a fact sheet for people like me considering the option to seek services overseas or to import medicines.

    Can I share with you some information that I saw last night on my local news channel? I live in the south west so I receive BBC Points West. There was an interview with a doctor called Steven Gill a neurosurgeon at Southmead Hospital in Bristol. It relates to a drug called GDNF and the rights to the drug have been purchased by Parkinsons UK. The doctor is going to run a trial next year for people with MND using this drug. There was footage of a man who has Parkinsons and had been on a trial of it. The trial was stopped as researchers said it didn't stop tremors, but as time has gone on some people in the trial seem to have improved and there is a thought that maybe the GDNF is more of a long term drug. I have tried to contact the doctor today for more information (his secretary is on holiday so I have left a message) and I have also emailed Parkinsons UK asking for more information. I have tried Googling it and there is information about the old trial but nothing about the new. Again I'm not trying to give false hope but I do believe that sharing information is the way forward.

    Kind regards
    Little Sister


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  • matthew55
    replied
    I know hope is all we have but realism must be considered at some point. 😉☹ī¸đŸ˜˜đŸ˜x

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  • Ellie
    replied
    Littlesister A warm welcome to the forum.

    I know of two people who used Edaravone - one bought it from India without a prescription, one bought it in Europe, with a prescription. Both had personal contacts administer the meds through an IV. Unfortunately neither saw any benefits, both eventually stopped, however, neither were in the early stages of progression.

    I wish your brother the very best.

    Love Ellie.

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  • Gordan1111
    replied
    Welcome Littlesister I have sympathy from where you're from. It feels too often as if we're left to scrabble in the dark desperate for any treatment from snake-oil merchants. I personally feel if there's they nothing they can do then let it be a real Wild-West. Let us have dispensation to be able to access any drug, legal or not.

    Leave a comment:

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