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Severe neck weakness

I'm 39 years old and live in Portugal. Was diagnosed with SMA type2 in London (Hammersmith Hospital) around my early teenager years, and at the age of 18 I had surgery to stop my scoliosis. After that I had very few good years (with minor limitations in my daily basis life) but lately I have felt severe neck weakness specially when walking, can't stand my neck straight (it bends back), which is very uncomfortable and gets painful sometimes too. It is affecting my quality of life hugely, so I was wondering if anyone has experienced anything similar or can help me. Unfortunately the disease is not very known in Portugal so it's not easy to find help/more informs here. Thank you.

  1. Hi I'm sorry to hear you are experiencing such pain and that it is impacting your quality of life. I know you mentioned that the condition is not well-known where you are in the world, but have you reached out to your physician about what you are experiencing? We always recommend reaching out to one's physician with new or developing symptoms. When it comes to SMA muscles in the arms, legs, head and neck can be impacted as a result of the condition. I included an article that may be of interest - I also included an article on type 2 - I hope this information is helpful. Kindly, Jessica, Team Member

    1. NOTE: I am NOT a DOCTOR or a HEALTHCARE professional.

      if you don't mind sharing,

      1. Are you ambulatory ? Able to walk once you are standing with / without assistance?
      2. What is your height ?
      3. What is your weight ?
      4. Have you tried hot water bags ? cos I use that when I go to bed either on the neck or my legs to help increase the blood flow and remove the built up strain.

      NOTE: I am NOT a DOCTOR or a HEALTHCARE professional.

      1. May be the hospital which did this research could have better information, since you were saying that it is not easy to find information in Portugal.

        1. I definitely recommend trying a muscle relaxing lotion! That always helps me!
          -Kellie, Contributor

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