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    Adapting to Life Outside Our Home With SMA

    I once heard a joke that a woman’s mind is like an Internet browser that has 1000 tabs open and running at once. I laughed at the time, but came to realize that if I didn’t actually feel like this before hearing the short acronym “SMA,” I most certainly do now.

    I spend much of my time pre-planning and thinking of possible problems that we may run into because of the kids’ diagnoses. I think many other SMA parents do this as well. Prior to our lives with SMA, we didn’t realize just how inaccessible the world is to those who are differently-abled.

  • This topic has 10 replies, 6 voices, and was last updated 8 months, 1 week ago by Jeremiah Kelley.

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      • #18074
        TrySmiling
        Participant

         

        Hello! I’m a 35/m living in Japan.

        Thank you for making this community. It was suggested to me by YouTuber smajourney51.

        I do not have a diagnosis for SMA Type IV. I am waiting on the possibility of an EMG or genetic testing as my next appt. with my neurologist is April 20th.

        May I ask what onset symptoms and speed of Type IV are like? I’ve experienced a tumultuous seven months of unpleasant symptoms* but my biggest question mark is that I do not have any perceived or measured strength loss despite losing so much mass.

        Thank you very much for your time and advice

        * I don’t want to bore anyone with a book describing my symptoms in detail unless requested.

      • #18075
        DeAnn R
        Keymaster

        First of all welcome! I’m not as familiar with type IV, so hopefully someone will have more info for you. I thought these articles might be of interest though. https://smanewstoday.com/spinal-muscular-atrophy-type-4/ https://smanewstoday.com/sma-life-expectancy/

        • This reply was modified 8 months, 2 weeks ago by DeAnn R.
      • #18079
        Kevin Schaefer
        Keymaster

        Thanks for commenting and reaching out!

        Unfortunately, Type IV is extremely rare, and my knowledge of it is limited as well. Even at SMA conferences, I rarely meet anyone with this type. Based on your age and the fact that you’ve experienced symptoms, it is a possibility, but I would wait to see what your neurologist says. Please keep us updated though. We’re happy to support you any way we can.

      • #18087
        Michael Morale
        Keymaster

        When I started reading this post, I thought to myself, that question looks familiar. Welcome, and thank you for joining the SMA News Today forum. I’m glad that you took my advice and created an ID and became a member, thank you. Like Kevin and DeAnn said, there’s really not a lot of information out there regarding SMA Type IV. I met one individual with Type IV at the 2018 Annual Cure SMA Conference in September 2018. Out of all of the people that I met during this conference, they were the only one who had Type IV SMA.

        Surprisingly, there’s even an SMA Type 0, which very few people know of. To be honest with you, I don’t think there’s any information on the Internet regarding this category of SMA. Let me do some research on it during the next week, and I’ll try to get you some more information. Kevin said to talk to your neurologist, which will probably be your best bet, but then again, some neurologists don’t even know what SMA is, which kinda scares me.

      • #18093
        TrySmiling
        Participant

        Thank you all for your replies and warm welcomes. And a big thanks to you, Michael, for directing me here.

        DeAnn,
        Thank you very much! I’ve been through a gauntlet of articles and medical papers which range from helpful to frustrating. I’ve obtained some very useful information from them but I was really hoping to find some first-hand accounts. I’m simultaneously looking into Kennedy’s Disease and found a great resource for first-hand accounts from *people* (as opposed to MDs) which have been helpful but I haven’t been able to track down a similar source for SMA Type IV 🙁

        Kevin,
        No, thank *you* for accepting me with open arms, other communities I’ve tried to interact with along this journey have not been so welcoming to me as I do not have any DX at this time.

        Michael,
        Thank you again for suggesting that I join!
        As of this time I’ve seen three neurologists. One is my main and the other two have been for 2nd/3rd opinions but I’m considering sticking with the 3rd opinion MD because he seems to be the most thorough and willing to act upon my symptoms on a shorter timeline. Case in point, he’s the one seeing me on the 20th of April while my ‘main’ neurologist wants to see me next in June.

        So at this point, unfortunately, talking to any of them might be a bit difficult until later this month. 🙁

      • #18126
        Lupa F
        Participant

        Type IV shouldn’t have any symptoms other than some general weakness. I have type 3 and that’s the only thing I’ve really ever had wrong with me. I don’t experience most of the other problems many of the others on here with type 2 (and type 1) have had. I had weakness showing up as early as age 5 but walked till I was about 30, so you shouldn’t have too many issues if you’ve not noticed anything until recently. Many of the symptoms are caused by the lack of muscles, not SMA itself.

        Genetic testing should be able to tell you clearly if you have SMA. The types (0-IV) of SMA aren’t really any different from each other except for severity.

      • #18149
        Jeremiah Kelley
        Participant

        I am a male with SMA Type IV.  I’d be glad to share my experiences with you.

      • #18150
        Jeremiah Kelley
        Participant

        I have been following this forum for a while, but have not registered or posted before now because I’m embarrassed at how lucky I am in comparison to most.  I am a male with SMA Type IV.  I have no functional smn1 gene, but at least four copies of the smn2 gene.

         

        Here is my story.

         

        The actual onset of symptoms occurred when I was thirty.  I was at a party and dancing when it suddenly felt as if the rug had been pulled out from under me, and I ended up flat on my keister. I could tell it wasn’t simply a loss of balance.  It felt more like my legs just weren’t there for a split second.  Very disconcerting.  I pretty much stopped dancing at that point.

         

        A few months later I discovered that I could no longer run without falling down.

         

        Symptoms continued over the years, getting gradually worse.  Sometimes I would fall down while simply standing in place.  It always felt as if my legs had “disappeared” for a split second.

         

        I started to see a neurologist about twenty-five years ago, who commenced to treat me for “drop attacks”.  He was convinced I had a form of epilepsy. I spent more hours in an MRI than I care to recall.  I complained of weakness in my legs, and pointed out that I could only get out of a chair by using my arms, but he’d just suggest another MRI.  He prescribed various anticonvulsant drugs. He finally retired

        • #18158
          Kevin Schaefer
          Keymaster

          Thanks for sharing Jeremiah! And don’t feel embarrassed at all. We’re a supportive community here, and we all understand that the severity of SMA varies from person to person and based on what type someone has. You are more than welcome here.

          Honestly, I really admire people like you who didn’t experience symptoms until later on in life. SMA has always been a part of me, and as such I’m just so used to living with my disability. I imagine it’s incredibly difficult to have it hit you all of a sudden as an adult.

          Also, just know that SMA doesn’t stop me from dancing: https://smanewstoday.com/2018/06/12/sma-dancing-wheels-determination-friends/?amp.

          • #18175
            Jeremiah Kelley
            Participant

            Thanks for your support Kevin. I admire your attitude. I think your story of dancing in your wheelchair is fantastic – I wish I’d seen it.

      • #18151
        Jeremiah Kelley
        Participant

        I’ve run into some problems posting.  I will continue when I can.

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