A lot of members in my family have been diagnosed with this terrible disease.
I'm still too afraid to get tested. I'm 33 years old, and have been experiencing some symptoms lately.
My symptoms are muscle twitches, eyelid, legs, neck, arms. I have also noticed that when I'm eating I swallow too fast and feels like I'm choking. As for balance, I have experienced on one occasion that felt like I was falling to the side, but didn't fall.
Can you all share your first symptoms?
I'm terrified because from what I have read, the earlier you get this disease, the worse your condition will be.
Thank you all for the support.
My first symptoms were definitely a loss of equilibrium. That is my primary symptom which also affecting my gait. I would recommend you try to get disability benefits.
I am 29 years old (I'll be 30 next month... :'( haha) and found out I had MJD about 4 years ago. (Many people on my father's side of the family also suffer from this disease, however they didn't show symptoms until their 50s.) Lucky me, I am the first to be able to go through these symptoms at an early age. My first symptoms were definitely losing my balance (falling mostly to my left) and my gait (I tend to drag my toes). Trust me I know the feeling being terrified of the unknown, but the best thing you can do is live your life as best you can. As my fiance would say "embrace the suck". I am still working full-time, getting married in September, and am planning to have children soon after! Yes, this disease does suck, but it's not impossible to live a life as "normal" as your "new normal" is! I wish you all the best and if you ever want to message me separately to chat about your fears or just for support (Trust me I need support as well; I am not always this positive when I discuss this and will occasionally throw myself a pity party!!) feel free to anytime!! Take care of yourself and exercise; I am a true believer of "if you don't use it, you lose it" even if it's difficult and not pretty!
I have MJD-SCA3
My first symtom was loss in balance(about 33years old today I’m 46 years old)
I was diagnosed 10 years ago and stopped working 4 years ago because of my balance. I am now 55 years old. I am the only family member who has been tested to date. My first symptom was balance and now my gait.
Stay positive, exercise and stay active as much as you can and remember you are not alone.
Thank you for the reply..
As for the balance... did it happen quickly.. or was your balance off for quite some time?
Mauro de Sales Fortes said:
I have MJD-SCA3
My first symtom was loss in balance(about 33years old today I'm 46 years old)
I was your age when I started to feel “off balance” I thought I had a bad inner ear infection or something. The floor seemed far away, like my foot didn’t know where to go in order to take the next step. The progression happened slowly. I was able to hide it for about four years. Then for the passed 2 years my close friends and family could tell, and I began having symptoms other than balance. The rest of the world just thought I was drunk! 6 months ago things changed a lot. So it was a slow six year progression before needing assistance devices.
Talk to your family. Don’t keep this huge fear to yourself. Talk ask questions, get all the support you need.