Help..desperate for help with possible muscular condition.

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  • #193695
    Help..desperate for help with possible muscular condition.

    Hello,
    I hope I am ok to post this, new member. Desperate for help with what I am suffering..will try and keep short.
    I am suffering with extremely uncomfortable muscles, legs are wobbly to walk, can’t do much standing, strange chest sensations with feeling of breathlessness, my eyes often feel strange (like not working properly), weak strength of urine flow, on/off laboured swallowing, can’t always open jaw fully, and often can feel little lumps under my skin. Lots of other little things.
    Sometime ago I was diagnosed with Chronic fatigue syndrome, something I always questioned as my problems do not behave in the way CFS sufferers say. Also many of my symptoms do not fit CFS at all. However, due to that diagnosis dr’s do not take anything I report seriously, no support, help or interest.
    Recently I had a scan contrast. I have had in the past without issues but this time my muscles and breathlessness and mobility have been severely affected within hours after my scan. Go not interested, says allergy. Makes no sense as been ok before.
    My father was recently diagnosed with polymyalgia/polymyitis (this alerted me somewhat as can be family genetic).
    When I search my main symptoms it comes up with myasthenia gravis. I’ve no idea anymore, all I know is my life in a bit of a mess suffering all this and just left to it.
    Can anyone tell me if my symptoms represent a muscular / neurological condition, how can I get the right medical specialist (and which type) to help, even take seriously?
    Any help would be so appreciated as I’m at my wits end.
    Many thanks in advance,
    L :new:

    Lilly08
    Participant
    Posts: 0
    Joined: 08/04/2021

    Lilly08
    Participant
    Posts: 0
    Joined: 08/04/2021
    #193714
    Reply To: Help..desperate for help with possible muscular condition.

    If you have a muscular dystrophy or a Myositis it will show on a routine CK blood test as will be raised.

    What I would do is call your doctors and demand a appointment.

    Tell them you are sure you have a issue and you want the following tests.

    CK blood test to look for muscle damage

    Liver function test, MD leads to high liver function results

    Kidney function test, high ck can damage kidneys

    White blood cell count, white blood cells attack good muscles in a myositis

    These are all routine blood tests you can have at a gp practice with results next day.

    Don’t take a Gps buklsh@t if they don’t take you seriously raise it with the practice manager. Most have never seen a MD or myositis patient

    If you happen to have some spare cash and are really need a answer fast, get a private mri of most week effected area as if either a md or myositus it will show muscle loss/damage. Can get them next day if you look around,I paid 1k for mine but on one limb looking £250 to £600.

    Also a myositis is not inherited so you would not of generally got it off your father. A MD is inherited, MD and a myositis are commonly misdiagnosed for each other.

    Joe
    Participant
    Posts: 0
    Joined: 01/01/2020
    #193739
    Reply To: Help..desperate for help with possible muscular condition.

    Hello and welcome to the forum. Your symptoms could describe a whole host of conditions, and not necessarily one. You could have a ‘main’ problem which causes other difficulties, or there may be more than one condition co existing with another.
    May I say therefore, that I support Joe’s advice. Go back and demand an appointment and do not take no or Covid for an answer. The blood tests are simple and very useful, and not all that expensive. If they will not do anything, demand a second opinion. Try and get a referral to a neurologist whom I am sure will be able to diagnose your problem.If that is denied then there is always the General Medical Council, BMA or other bodies that will help you.
    Please do remember we are here to help and support. Do come back to use if you are not making progress or to tel use how you are doing.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #193775
    Reply To: Help..desperate for help with possible muscular condition.

    Get an appointment ASAP.Then refuse to leave until tests granted-and record conversation.
    My sisters husband did this over a different issue a few years ago. It worked. If they call police fine it will make local news.
    NO VIOLENCE from you stay in the right.
    Good luck.

    David

    Diggers14 Diggers14
    Participant
    Posts: 2
    Joined: 16/11/2014
    #193778
    Reply To: Help..desperate for help with possible muscular condition.

    It’s sad the state of some GP practices is like this, some GP surgery’s are paid a bonus to keep referal rates to hospitals down, that and vaccinations and flu jabs in which they are paid around £10 per a injection, and now for covid jabs at a practice they are paid around £12 per a injection.

    GP doctors are also part self employed. I had study loads regarding NHS and GP practices since my illness as I found it strange that I could not get referred and trying to book a routine appointment is hard and they put you off…..

    I am not a anti vaxer and my son is vaccined However the practice called me 10 times a day to arrange my 4 year old son a seasonal flu vaccine when there is near to zero chance of him being adversely effected by flu at his age, when the receptionist finally got through to me and I told her my son is not having it she shouted 10000s children die each year which is a totally incorrect and informed me she will be telling my doctor.you see its a business unit for profit

    Experts in dishing out annual vaccines and also experts in delaying or not referring you to a hospital.

    Also NHS specialists, its funny when I got referred to see a neurologist they said it would take 3 months, so I paid £300 to go private at spire…. Guess what same neurologist I would be waiting 3 months on NHS I see in 5 days for £300. Most specialists do side line business its all profit driven

    My father keeped going to the doctors about a issue and they fobbed him off most the time. When he lost weight rapidly they finally reffered him…. He died shortly after as cancer which had spread everywhere, I was just a kid and he was my hero.

    My advice to anyone who has reall medical issues is to call 111 and go through the medical diagnosis procedure in which will either tell you to go to the hospital or a doctor from gp practices will have to call you back within 3 days and reffer you if needed.

    If its really serious failing that just cut out the practice and go to A&E, I took my son a couple of times

    Joe
    Participant
    Posts: 0
    Joined: 01/01/2020
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