Help again

[weegiz12345]

How fast have people’s ataxia progressed, mine at the moment started about 12-13 years ago. Didn’t really notice it progressing until 2-3 years ago. Now it seems to have got worse in the last couple of months and seems worse every week that goes by.

louise xx

[7151]

Hi yes like you mine started 8 years ago but was nt dramatique ! Over the last 8 months Its got steadily worse ! I have à rendez-vous again with my neurologue next week.and i ve written à list of all thé things i ve read even Gluten Ataxia My head spins with all of this and neurologues and dr just dont know much about Ataxia 😪

[weegiz12345 in reply to 7151]

I agree drs seem to know nothing and last year at my consultant’s appointment they promised me they’d do lots of things which they haven’t done anything about so won’t bother going there again thanks for your comments though xx

[weegiz12345 in reply to 7151]

Hi again just read you have leg pain, I’ve got feet problems can I ask how you cope? Xx

[wobblybee]

My first ataxia symptoms caused me a lot of confusion because they appeared while I was coping with perimenopause….I was in my early to mid 40s…I’m now 72.

🤔 I noticed times when balance was strangely affected, such as when I put my head back or I turned quickly. Then I had eye problems, and eventually unexplained falls.

Progression has been slow, but even so it has been challenging. Now…I experience most general ataxia symptoms..but the emphasise for me has been Vestibular issues and I haven’t received much support in that respect.

It’s always a good idea to find out as much as you can about ataxia….but you do need to look at reliable sources such as ataxia.org.uk and ataxia.org Information on these two links is easy to understand, not full of medical jargon.

[weegiz12345 in reply to wobblybee]

Thank you for your comments xx

[2hot]

Hi, Mine started to be noticeable when I was in my early 30s but no one took much notice, including me. I am now 60 and the symptoms have got dramatically worse over the last two years. At the moment the worse symptom is the light induced migraines and dizziness. I am also worried about stepping on the children at school as my balance is much worse. Hopefully I get to see the geneticist in June but I am not sure he can help with symptoms. I will let you know if I find out anything useful.

[coat2003]

i am CURIOUS re your change/menapause? DONT EXPECT MUCH FROM EXPERTS...They can monitor one and point to a right direction.Your own mental health, vits ,good home made nutritious food and exercise...everybody's ataxia complex.And the same goes for maintaining it, so it doesnt progress faster,than needs be.

[weegiz12345 in reply to coat2003]

You’re right about consultants though they’re rubbish can’t do anything for us anyway. Have given up on them. Thanks for your comments xx

[CambioOOOW]

Have you changed diet? Doing this helped me. (A massive improvement also came from haveing metal fillings replaced)

[Pam_ann]

Hi. Looking back realize my ataxia started over 12 yrs ago but cognitive and speach issues ignored prior to that . The last 2 years it has progressed substantially especially the last 6 months so much so I do not go out alone due to dizzy spells and lack of balance. I have extreem sweeting resulting in complete exaustion and bed rest most days. Sounds as tho we are experiencing a similar journey.

[weegiz12345 in reply to Pam_ann]

Hi

It does doesn’t it, creepy. I don’t go out much either. Waiting on a mobility car been almost a year now. Hopefully I’ll get out a wee bit more but rely on my rollator all the time. Waiting on a new one for indoors it will allow me to sit on it and move about indoors only indoors though what a find this was. How do you manage indoors? And out? Nice to hear someone s like me. I’m 61 now. Take care xx