Hi, let’s start from the beginning.
My mum has been disabled since i was about 6 (i am 33 now). My grandma who was her carer said that she never got diagnosis and that it was something to do with motorbike accident when mum was hit by a bike and hit her head on the pavement plus according to my grandma my mum was always a bit “weird”. Anyway, grandma died last year and i was going trough paperwork and i found that back in 1993 mum was diagnosed with Carebellar Atxia type 2 however since then it has not been mentioned anywhere, even through mum had several hospital visits/surgeries and is now in care home. All her paperwork says unknown neurological condition. However her symptoms fit with Ataxia however she lives in Poland and all the test results are on paper and it’s quite easy to hide it. I am worried my grandma wanted to cover it up so i don’t find out that it’s genetic.
Nobody else in my family has it (as far as i am concerned) but i am really worried about myself. I don’t have the symptoms yet. I had a bit of vertigo and dizziness but it got much better since i started taking Iron and Vitamins supplement plus I have been under a lot of stress in the last 12 months (redundancy at work, grandma’s death and mum had breast cancer). And i just found out I have severe hypermobility - i started going to physio because i had really bad headaches and stiff neck and he checked me and he said that he has never seen someone as hypermobile as i am. I always knew i was a bit more flexible but now when i started paying attention to it i noticed that its really bad. When i started yoga i freaked everyone out because i could bend/stretch so much.
Has anyone else had hypermobility and ataxia?? Are those 2 connected in some way??
I started having the dizziness and muscle aches again but they can be attributed to recent stress and/or hypermobility or Ataxia. I usually get it when i suddenly turn around or quickly look down. Other than that i am active, can drive a car, can do headstands, yoga, stand on one foot walk in straight line etc.
Thanks and sorry for a long post. It’s all new to me and i am really worried about this. especially since i have 2 kids and i am worried i could have passed the ataxia to them.