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Unidentified Muscle illness - searching for someone with same symptoms.

Posted , 5 users are following.

lois123
lois123

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

0 likes, 4 replies

4 Replies

  • christophe45089
    christophe45089 lois123

    Posted

    Im not sure what you have but i went to school with a girl that sounds similar to what you are talking about. When she walked around she couldnt walk flat foot, she would always walk on her toes. Her heels wasnt about to touch the ground as well. I hope it makes you feel some what better to know your not the only one thats suffering with this problem
  • kerry53469
    kerry53469 lois123

    Posted

    I am 34 and my symptoms started about two years ago. I have muscle spasms in my neck and back. Inability to relax muscles causing me to have difficulty walking. My right foot turns in and drags when I walk. I have difficulty letting go of objects in my hands because my hands clench. My spine curves so that I have a stooped or slouched posture. If I try to stand with my shoulders back its painful and unnatural. I do have some involuntary twisting and contorting movements of my neck and head. Myoclonic jerks, restless legs, I developed an adult onset stutter and the more physically active I am the more my muscles stiffen and become painful. I went to a movement disorder clinic and they told me they think it's a functioning process disorder caused by underlying anxiety I am unaware of. Which is completely ridiculous. I'm currently looking for a second opinion
  • MarieHorn
    MarieHorn lois123

    Posted

    My son is 17, going through similar problems, has been for 2 years.  Weakness in upper legs and shoulders and muscle atrophy.  He has problems getting out of chair and walking steps, uses tippy toes when doing this.  His neurologist ran a bunch of bloodwork, nothing showed.  So now he's being test for a broad panel of limb girdle muscular dystrophy through genetics saliva test, results wont be back for 4 months.  I suggest you see a Neurologist right away to find the cause.  
  • MarieHorn
    MarieHorn lois123

    Posted

    I apologise, I read your story again and missed the part that you did seek out to a Neurologist about this and had the DNA test done.  What were the results, may I ask?
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