13 thoughts on “Central core disease

  1. These videos really help demonstrate the reality of living with your disease. I had not heard of Central Core Disease, but can relate to much of what you describe as I have ME/CFS, which also affects the muscular system – have difficulty with stairs, rely on mobility devices, can’t drive, etc. There are so many more people in our position than I think the public realizes. Good on you for educating others. Take care.

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    • Thank you so much for watching and you comment. I was originally diagnosed with CFS before the muscle biopsy. It is very similar to central core disease in its limitations. You are so right, many of us suffer with these challenges and who knows how many that are undiagnosed! I’m so sorry you have some of my same symptoms.

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      • How did you go from CFS to the biopsy, if I may ask. Seems doctors here are reluctant to do any further testing. While I have all the other classic symptoms of ME – orthostatic intolerance, cognitive difficulties, and so on – it is my muscles that are causing the greatest stress at present.

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      • Since I was 20 years old doctors were sure it was fibromyalgia or CFS. The pain I had was not like most muscle disease. But the weakness became more prevalent and also some atrophy. It was only by chance I had the muscle biopsy. All of my blood work was normal. Nothing elevated like CK or lactic acid. I was referred to the mayo clinic 11 years about when I was 32 because my doctor wanted to make sure she wasn’t missing anything. The doctor at the Mayo Clinic said she didnt believe anything was wrong with me at all. BUT to appease me she’d do a muscle biopsy. She called me on the phone 3 weeks later to tell me that I had a muscle disease and admitted that she did not think they would find anything and that she was shocked. Muscle biopsies can show SOOO many diseases. Many people in the group I am in for rare diseases, doctors believed there was nothing wrong or CFS until they had biopsies to find they had muscle diseases. Now, unfortunately, there is no treatment or cure for what I have. So finding out that I had it really didnt benefit me so much!!! The MDA did buy me a motorized scooter which was amazing. But I have no treatment.

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    • Well i can only thank you immensely for taking the time to write to me with your empathy. Thank you! My husband was also a competitive swimmer. I was a professional waterskier. It has taken a LOT to get used to that is for sure.

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      • You are such a lovely person and sometimes despite our impediments we can still reach out and help others. You do this, I know. You have been so kind to me and that brightens my day. My darlin’ this must be a huge challenge and I hope beyond words that you allow your mind to override the body and it’s limitations. I feel very strongly that you can, do and will.

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      • Thank. You again. Kindness is a wonderful thing. I appreciate it and i feel it deeply for you and others. My mind never gives up. Even my body just keeps on trying. I think that is why i am still able to walk as much as I can because I just don’t give up.

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      • You are an inspiration to me because I have given up and you show me how to keep on fighting. My having given up has affected my body, of course, but I find that “even my body just keeps on trying” too. If I just give it a little it gives back a lot. I think it doesn’t hurt that we learnt in the past how to honor our bodies so when you need it, it’s kinda like your dogies, you give a bit and they give so much back.

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      • Believe it or not, I talk to my body, in the mornings I say…alright, I know you have it in you, lets get moving! And sure enough it starts moving! Just writing that your body gives back with you putting in just a little shows your fighter mentality and that you havent truly given up.

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  2. I have M.S., and seem to be at the same level of functioning although some of the details are different. About a year ago I received a wheelchair van with joystick controls so I can drive again, but I don’t cook at all because I can’t trust my hands with knives or near the stove/oven. If my kids didn’t help so much my life would be a lot more empty. For the most part I don’t have any friends anymore. TH husband is helpful but not reliable. 😦 I guess this comment is to let you know you are not alone, and the feelings are the same even when the disease is different.

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    • Thank you very much for sharing. I wondered if the same emotions came along with different debilitating illnesses and I guess that answer is yes. It is frustrating cooking now. I made that video two years ago and a lot has changed. My hands have a tremor and shake and my upper body is not strong. One friend did buy our thanksgiving dinner. I have another friend who will pick up a prescription . I feel very alone though. No one is in my daily life other than my daughter who is physically sick herself and my husband but he is gone long hours. Thanks a lot for your comment.

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