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Viewing 10 posts - 1 through 10 (of 10 total)
  • #189943
    Reply To: Hi, I'm Bill, I have IBM.

    Hi

    It might be useful if you share abit about yourself like age, first symptoms, progression of IBM and how it currently effects you.

    It might not be as bad as you think, but yes initially is shocking and help is basic as most GPs know nothing about these conditions

    Joe
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    #189750
    Reply To: Possible benefits how will I survive

    I’m currently self employed in building sector on a long term contract in which they will drop me instantly if knew. No responsibility or commitment as I’m self employed.

    Joe
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    Joined: 01/01/2020
    #189740
    Reply To: MD and Diabetes

    The thing is most hospitals were near empty during covid peak, gp surgerys not doing many face to face just phone calls.

    I think you really have to push hard, don’t feel like you are imposing just call your gp practice everyday until they sort your issue out or write a letter to the practice manager.

    Mike you should look into a blood pressure monitor as Diabetes causes high blood pressure, which can lead to trouble if not sorted. My blood pressure has gone up so I called my GP Wednesday and I am getting a 24 monitor from them to assess it

    Digger at the very least they should do a ECG in your practice, I had a echo cardio about a month ago so it can be done now

    Joe
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    #189608
    Reply To: MD and Diabetes

    Do you have type 1 or type 2 diabetes.

    I guess with MD as not being able to be active and tired can lead to being overweight(even if due to muscle loss) and inactive which with progression leads to diabetes

    I would speak to your gp and also
    Maybe buy a blood sugar monitor for diabetes, I have one and also a blood pressure heart rate monitor. We have life long health issues so it’s good to keep track of our bodies

    I think with the MD there will always be some byproducts health issues caused by the muscke wasting.

    My resting heart rate was around 55bpm now its around 85bpm and my blood pressure has gone up.

    Joe
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    Joined: 01/01/2020
    #189582
    Reply To: Bionic knee braces

    More videos and Info here, look pretty good

    Levitation Knee Brace

    Joe
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    Joined: 01/01/2020
    #189576
    Reply To: Awaiting Test Results

    Typo above I meant ECG at doctors surgery with nurse or better still a echocardiogram which is basically a ultrasound and also measures heart wall thickness, pressure and can tell any scaring ect ect I had both

    You mentioned this all came on a year ago, before this was you totally fine?

    Hope all works out as best it can

    Joe
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    #189575
    Reply To: Awaiting Test Results

    Hi Paul

    Regarding your doctor who did the nerve conduction studies says your nerves were not taking in the electric shocks despite been on full power during your

    Electromyogram test helps assess if its a possible MD by checking if the muscle weakness is a result of destruction of muscle tissue fibers like in MD rather than nerve damage as in other neurological diseases.

    I’m no expert just a sufferer of a form of MD who has studied a lot. If your doctor is saying you have nerve issues as non responsive on high power during electrical test then maybe it’s not a MD as could be another neurological issue regarding non responsive nerves that has caused muscle wasting

    My electrical test said muscle issues but nerves fine.

    You should also look into getting a ECG at your doctors or a
    Electrocardiogram at a hospital via your gp to assess your heart

    Joe
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    #189565
    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

    Joe
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    #184521
    Reply To: Medication to slow down MD

    I have started taking the following supplements daily

    Soy Protein Isolate Vegan Protein Powder
    Acetyl L-Carnitine Tablets 500mg – High Strength
    HMB Hyper Strength Amino
    Co-Enzyme Q10
    Creapure Creatine Monohydrate
    High Strength Vit D Cholecalciferol
    High Strength Vit C
    Resveratrol
    Vitamin B12 1000mcg Methylcobalamin
    Spirulina Tablets
    Chlorella Tablets

    I went vegan for 2 months last year and felt amazing and healthy so i am about to start that again, it is alot of prep to be fair so hence why i stopped. meat contains advanced glycation end products which causes increase inflammation in the body.

    Watch the Game Changers if you have netflix

    I am now strongly researching synthetic testosterone as the androgen receptors respond to testosterone by signaling muscle cells to increase muscle protein synthesis as with MD the rate of muscle protein synthesis is insufficient to replace degraded proteins in a hope it will slow things down, i know there is no cure i am just looking to slow things down so i can live a normal-ish life even if it means taking a few years of the end number i destined to go at

    Joe
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    Joined: 01/01/2020
    #184520
    Reply To: Medication to slow down MD

    Thank you for your reply, i am using knee supports which you can get from any fitness shop however i am now looking to get these knee braces with springs built in on the sides as helps with standing up from a chair.
    i have lost muscles that support the knee so need these and work well.

    If possible could you write about your progressive condition since 28 to now at 44.

    Joe
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    Joined: 01/01/2020
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