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    Music man's wife
    Forum Member

  • Music man's wife
    replied
    Sue, to get a diagnosis for hubby after several months of nothing we can do etc, we paid to see a private neurologist. He set the ball rolling and we got the diagnosis. Not what we ever thought but it did help us to see what we were dealing with and it let us into a lot of great MND related services.
    Really £ 250 well spent.

    Leave a comment:

  • denise
    Forum Member

  • denise
    replied
    I dont know if im hoping for it to be one thing or the other. Im just hoping whatever it is it can be treated and that they'd hurry up. Not a lot to ask for. 😩

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  • Ellie
    Forum Member

  • Ellie
    replied
    Originally posted by Suefromwakey View Post
    just want to put a rocket up
    I'll supply the rocket fuel 🚀 😁

    Leave a comment:

  • Suefromwakey
    Forum Member

  • Suefromwakey
    replied
    Yes Ellie she comes up as specialising in "Neurology" makes no mention of special experiences etc, she did say she would be speaking to someone "Higher" so that will be the meeting you mention - she hoped it would be December

    just want to put a rocket up

    Thanks

    Leave a comment:

  • Ellie
    Forum Member

  • Ellie
    replied
    Google her, Sue, her area/s of expertise will be listed. Ideally, at this stage your husband shouldn't really be under a 'General' Neurologist, but under a Neurologist with a special interest/experience in Neuromuscular Disorders and/or Motor Neurone Diseases. Best practice is that his case, being undiagnosed and progressive, should be discussed at the Neurology Dept's regular case reviews.

    I know that Covid might interfere with 'best practice', and just hope things improve for you both.

    Leave a comment:

  • Suefromwakey
    Forum Member

  • Suefromwakey
    replied
    She is a Consultant Neurologist and promised a face to face, to be honest I don't know difference between the professions

    Leave a comment:

  • Ellie
    Forum Member

  • Ellie
    replied
    Sue, is the Consultant's review an in-person appointment, and any idea if the Consultant is an MND Specialist, Neuromuscular Specialist or General Neurologist?

    Sorry you're both still in Limboland 😕

    Love Ellie.

    Leave a comment:

  • Suefromwakey
    Forum Member

  • Suefromwakey
    replied
    again we have been left in limbo.................more than 20 months with a "Probably MND" and now this "Might be Myositis".................husband has not even seen a GP in the last two years..............so I have taken the old Bull as it were and asked that a GP visit him, what he got was a phone call ! anyhow he advised him to stop the Statins and await the Consultants review but that will be another 2 months away,

    It didn't seem right to continue with the Statins - they might be to blame - trouble with these phone consultations is no one actually gets to see what a state he's in, DR didn't even ask how he manages day to day........er by me 100%.......the nightmare continues

    Sue

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  • Ellie
    Forum Member

  • Ellie
    replied
    Suefromwakey
    Forum Member
    Suefromwakey It's unthinkable really that statins could be responsible for your husband's possible Myositis. There are several published papers on the link between the two.

    If only you could get a definite diagnosis...

    Love Ellie.

    Leave a comment:

  • The Blue Teddy
    Forum Member

  • The Blue Teddy
    replied
    Sue, I don't take any medication. I was put on steroids for a trial month after my first biopsy showed evidence of myositis, but without any conclusive reaction. My consultant is Dr Hammans at the neuro-muscular dept at Southampton General. I am not qualified to comment regarding statins, I have never used them. The Myositis Friends Support group are very helpful, with a lot of experience. They are a private, closed FB group, why not asked to join based on your husband's symptoms of possible myositis. Try the FB link on their website. http://myositisfriendssupportnetwork.uk/
    Maybe see you there. Chris

    Leave a comment:

  • Suefromwakey
    Forum Member

  • Suefromwakey
    replied
    Chris thanks for that, I have been on the various web sites but non are as forthcoming as the MND site which has plenty of info.I will check the Friends support group out,

    Could I ask you if anyone mentioned taking Statins to you? Did you actually take Statins? It was said by the consultant the other day and I've since seen something on the web saying Statins can cause this damage to the muscle. She didn't tell him to stop taking them as she needs to speak to someone else, hes been on them for about 5 years I reckon.

    This is a lift from the web

    "For some patients, statins cause necrotizing myopathy, a form of the rare idiopathic inflammatory myopathy, also known as myositis. Myositis is a chronic, debilitating condition that includes dermatomyositis, polymyositis, inclusion-body myositis, and juvenile forms of the disease"

    FGS this may have been caused by prescribing them to him -

    Chris do you take steriods - that was mentioned?

    Thanks for your help

    Sue

    Leave a comment:

  • The Blue Teddy
    Forum Member

  • The Blue Teddy
    replied
    Hi Sue, I have Inclusion Body Myositis (IBM) and Admin have allowed me to gate crash this brilliant forum. The symptoms are very similar to MND and indeed I had a recent F2F with my local MND nurse who recommended me looking at the MND site to get practical ideas on coping strategies. IBM is very rare, difficult to diagnose and has no medical treatment. My diagnosis took over 10 years during which time I put up with countless falls, serious swallowing difficulties and a slow loss of most skeletal muscle strength. I was eventually diagnosed by a rheumatologist following a couple of muscle biopsies.
    The MDUK and Myositis UK websites are worth a look, we also have a 'mutual support group' through the Myositis Friends Support Network, who have a website. One of the more recent victims to IBM is the musician Peter Frampton. Hope this helps. Chris

    Leave a comment:

  • Deb
    Forum Member

  • Deb
    replied
    Thank you for the explanation about lower and upper motor neurones Ellie. I was trying to put into words how my neurologist explained this to me but you are much clearer than I could have been.

    I used to find reading old threads very useful and informative so its such a shame they were deleted. As you say its really sad that we can't read comments from departed friends.

    Love Debbie x

    Leave a comment:

  • GaryM
    Forum Member

  • GaryM
    replied
    Thanks for that clear explanation
    Ellie
    Forum Member
    Ellie. Disgraceful and unthinking that they deleted all those posts, especially when they would have consumed very little storage space being largely text. I use the search facility before asking questions in case they've been asked before.

    Leave a comment:

  • matthew55
    Forum Member

  • matthew55
    replied
    In the age of the cloud that is despicable and backs up my thought that whoever runs this forum doesn't understand or care about us. 😠

    Leave a comment:

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