Unidentified Muscle illness - searching for someone with same symptoms.
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Hi folks, my name is Lois and I am 19. For the past 7 years I have been ¨suffering" with a muscle condition for which no diagnosis has been able to be made....so far. My symptoms are that my body does not seem to create or maintain sufficient body fat. My muscles do not build up through training, my muscle strength is reduced especially in my upper body but not in my arms and hands. Due to this, when I stand or walk my back is curved towards the front so my head is slightly tilted back (think of a curved banana). Before I would walk on my toes but my heels could touch the ground. Now due to my prolonged curved posture, my calf muscles have become shorter which has resulted in the fact that I still walk on my toes, but my heels can no longer touch the ground when standing or walking. My shoulder blades protrude outwards to the back. Sitting can be painful due to the reduced muscle strength in my back. I tend to favor sitting on the front edge of a chair and leaning back to rest the top of my torso on the back of the chair. So instead of sitting it is more like lying in my chair as this seems the least painful position. When sleeping I prefer to sleep on my stomach or side. Definitely not on my back as I think my back muscles may have also become slightly shorter too. Again giving a curved and unnaturally feeling position when lying down. I am seeing a neurosurgeon who is trying to determine an exact diagnosis but so far no concrete results. Currently they are checking my DNA to see what they can find, but this is taking a long time and results are not expected for another month. However this may still not show what the root cause of my condition is.
I would really like to exchange/compare experiences with people who feel they have the same symptoms. I have looked at conditions like Duchenne and FSHD, but have no real idea how they match my situation, so I would like to ¨talk" to people who have either of those conditions.
Thank you in advance for your open and frank responses. Not knowing what it is what I have does not give a happy feeling.
Kind regards, Lois
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