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  • #189531
    Hello im paul

    Hello everyone im new to this i originally got told i had HSP but now my neurologist thinks its MD.
    Is anyone on here tip toe walking?
    My calfs are ‘shrinking’ my tendons are shortening amd i can barley stand up.

    It would help to talk to a few people to see if we can compare symptoms.

    Paulmitchelson26 Paulmitchelson26
    Posts: 0
    Joined: 02/09/2020
    Reply To: Hello im paul

    Hi Paul

    I am no expert but I have studied hours on hours of MD and my GP says I know more than everyone in the surgery

    If you have not already had it ask your gp for a creatine kinase blood test, normal ranges are around 22 to 198 but with MD it is most times very high in the thousands. Should get results from blood test within 24 to 48 hours so thats a start.

    If you have had a mri on your calves it will probably show fatty infiltration of muscles but a mri can also tell if there is active mysotis, if myositis is not present on mri then is leaning more towards MD than a myositis issue

    Electromyography (EMG) test which a neurological specialist books which measures muscle response or electrical activity in response to a nerve’s stimulation of the muscle.

    Basically shows if a nerve issue or muscle issue, can also tell if muscle issue is a MD or myosotis.

    Another method is a DNA blood test but results take awhile…..

    Main confirmation is a biopsy where there take a small sample of muscle tissue in effected area. This is good diagnosis for MD confirmation but once they find your subtype it is best practice to confirm it with DNA test looking for excat gene defect biopsy states it is

    How old are you, how long have you had symptoms. Was you athletic growing up. What are main effected areas

    Posts: 0
    Joined: 01/01/2020
    Reply To: Hello im paul

    Hello Paul and welcome. Joe has given a very comprehensive set of suggestions for a way forward. It is vital that you have the necessary tests to determine which of the many varieties there are you might have. However, in this virus world we have you may have to be patient. In the meantime, do as Joe has done. Read, research, look up. FInd lots of information about what might be going on.


    So many love songs, so little love.

    embayweather embayweather
    Posts: 8
    Joined: 02/11/2015
    Reply To: Hello im paul

    Hi Paul, I was being treated for fibromyalgia when a very good rheumatologist picked up on my elevated creatine kinase blood test , and decided to look into my condition further…lots more blood test , EMG nerve stimulation and muscle biopsy.
    I was transferred to the neurologist and the DNA blood was taken , I was diagnosed with inherited distal myopathy and my DNA is still being tested at Newcastle.

    I was having falls and tripping over.
    My calfs have always been very big since being a child but lately noticed muscle wasting.
    Find I can’t stand for long periods of time.
    My hips shoulders and hands also play part to the condition.

    Hope you start to get thinks sorted , this is all still very new to me and with the pandemic not getting face to face support doesn’t help.

    Take care Tracy

    Posts: 0
    Joined: 06/01/2020
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