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SMA 3 with handweakness

My son started developing a weak grip about 16 months ago . He said when he was lifting weights at rowing training he couldn’t get a grip and his hand ‘would slip off’. We immediately went to our GP who referred us for a nerve conduction test which showed there was some sort of cervical Radiculopathy. Fast forward after a wait and see approach , these things can heal themselves in a few months, he has increased weakness and muscle wasting and it has started in the other hand . He is 17 now. We have been referred to a specialist neurologist and in the referral letter but mentioned ‘some unusual variant of mnd’ . To say that was a shock is an understatement. Our neurologist, who we hope to move from never discussed this possibility. He did say that in his 14!years of being a neurologist he has never seen this in a teen. He mentioned specifically spinal muscular atrophy but his legs are fine. He has no other symptoms, no pain and no sensory bliss. Does Sma always start in the legs or can it be the hands?
Any thoughts/advice appreciated.
🙏 thank you

  1. Hello , I can imagine the shock you and your family must have felt. My heart goes out to you all. <3 Symptoms and severity of SMA related symptoms can vary from one person to the next. Hopefully other community members will add to the discussion and their personal experiences. In the meantime, I included some information that I think may be of interest - and and If there is any other information we can help locate or simply provide a listening ear, please don't hesitate to reach out. Sending hugs to you and your family. -Jessica, Team Member

    1. Hi just wanted to check in to see how things are going? Thinking of you and your family. Hugs, Jessica, Team Member

      1. Hey , I’m so sorry your son is experiencing all of this! It’s always incredibly tough when something like this happens. SMA as you mentioned can happen at different stages.

        The above link explains more in depth about each type of SMA and the symptoms accompanying them. Does your son have any form of MD? Or is this what they are thinking is wrong? At his later age it’s possible he could have a late stage type, but I’m not a neurologist. I however have type 2 and was effected at about 18months old. I would recommend finding a neurologist that specializes in neromuscular diseases who might be able to give you a more concrete answer. Multiple opinions are always a great resource. I hope you and your son can find the answers and make a game plan on how to handle the situation. I can recommend that you encourage your son to keep moving as much as possible though because if he doesn’t stay active it could aide in losing more function. - Jennifer (Moderator)

        1. Hi all
          Sincere apologies for not responding until now and thank you so much for your kind responses .
          We are waiting for the results of genetic tests but the neurologist but it’s felt that he has Hirayama disease.
          Still a shock as currently there is no treatment and he will not regain full use of his hand but his mood is upbeat after the initial shock for him and that’s our priority now and to explore any potential treatments in the future.
          Thoughts with you all x

          1. Hi again my heart goes out to you all. <3 I am glad to hear his mood has been upbeat. I hope he is able to maintain his upbeat attitude, it can be helpful. I shared an article, written by one of our amazing health advocates, on how he maintains a positive attitude. Just in case the article may be helpful for keeping your son's mood positive and upbeat - Sending you and your family lots of positive vibes and hugs. -Jessica, Team Member

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