Hello everyone

My name is Hanna and im from Finland. I joined this community because im pretty sure I have a gene that causes ataxia. I have no idea which type, but im almost 100 % sure I have it, since my father has it. I started to have symptoms about two months ago, I noticed difficulty going down stairs and at night when I woke up, I have trouble keeping balance when going to the bathroom. I started taking q10, and already it has helped with my symptoms, at least I have more energy. Now that I read some posts here, I ordered trehalose from trehalose.co.uk/, Im praying to God that will help me. I dont know which type my father has, but he is now in very bad shape, he has had it over 20 years now. When I talked years ago to my fathers doctor, she said that they have no evidence it could be hereditary. But my fathers two sisters have ataxia (some form), and one has epilepsy and one schitsophrenia. Im thinking could these diseases relate somehow? Could there be a gene or something in my fathers side of family that causes these illnesses? Well, now I think im in trouble because I have had these symptoms. I have two little children, daughter 3 yo, and a son 4 months. I cant get sick now. My father is now 72 years old, he started to have symptoms somewhere between 40-50. I'm 29 years old. Has anyone had help with trehalose??

7 Replies

oldestnewest
  • Hi Hannah😊

    The best advice is, try to see a Neurologist who has experience of Ataxia. Not all Neurologists are experts in this condition. If it is acknowledged that ataxia is already in the family, your DNA could be tested for a connection. Unfortunately, there may be a connection but it's possible the actual type could still remain a mystery.

    I don't have any experience of TREHALOSE myself, although I know it's still undergoing trials. 🙂xB

  • I think your doctor may have been wrong about your issues being non hereditary, the only 2 ways of being sure are blood testing for hereditary ataxia and the good old mri scan. the mri is probably the most important but I think the nhs over here in the uk has a long waiting list so get your gp on it as soon as possible, he/she may think blood testing will be necessary first but i'm no doctor so i'm not sure.

  • Dear Hannaorava,

    Before going into any treatment you should see your family doctor to refer you to a neurologist and get a genetic test. If you have the symptoms you have obviously inherited the gene, but it does not necessarily mean it has been passed on to your children. Keep up the hope that it has not. My father had four 3 brothers and one sister, both he and his sister had ataxia, the other three did not get it. My father has 3 children and both my sisters do not have it. His sister had four children, (all well over 60 now) and none of them have it. There is a 50/50 chance it is passed on, so do not live in fear for your children now, cross the bridge when you get there. Speak to your neurologist to get a genetic test so that you get a diagnose before you embark on any kind of treatment.

    Thinking of you

    best wishes

    Isabel

  • What is the use to get the diagnoses? I already know i have it :( Theres nothing they can do to help... they couldnt help my father or my aunts...I mean there has to be cure?? Could it be trehalose? My symptoms have appeared in pretty short time... about couple of months :( i feel like im desperate

  • blood test to see

  • Hi Hanna,

    For what it's worth, know that you are not alone. My short reply is I hope you will read and research and fight the illness you feel with everything at your disposal including diet, exercise therapy, and supplements. There is a great deal of mounting evidence that when someone puts all of this together it has an enormous benefit. I know it is very hard to change ones lifestyle to include exercise and an improved diet, but the benefits are very clear. Good health is not an accident. It takes hard work. I may be overly optimistic, but the way I see it, ataxia such as you are describing comes later in life and is really a question of living to 70 or living to 90. I believe in my heart of hearts that even though doctors have no formal answer, you have the ability to help yourself live a full and wonderful life with a few simple changes. Look for my website starting soon that will detail all the latest research and "supplements" that may or may not be helpful! :D

    Joe

    P.S. Let me shout out a quick thank you to Wobblybee for introducing me to Ubiquinol (spelling??). I hadn't learned of that at all, and you opened a whole new avenue that I really want to try with my dad for symptom relief. Thank you!!

  • Hey, where can I find your website? I have read all your posts now, I feel there might be hope... I mean there has to be a cure or something that will stop this :( Thanks for your reply ❤

You may also like...