I actually was not diagnosed with ataxia in a classical sense, because my brain MRI did not show any shrinking or atrophy of cerebellum, but my gait has all ataxic symptoms as I am very wobbly and my gait became even swaying. I do not sleep well at night as I feel vibrations and tinnitus in my head, therefore when I awake I am completely exhausted. Have somebody experienced these symptoms with your ataxia diagnosis? Physiotherapy did not help me, it even made me worse. Can somebody advise what exercises were good for you. When I walk now I use either stick when I walk with the help of my partner, or use a rollator. I feel dizzy after rowing machine. Would somebody have experience with recumbent cycling mashine at home , would you recommend it for better legs muscles. I will highly appreciate your advice.
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It isn’t all that uncommon not to have Cerebellar Atrophy…I’ve seen posts from others saying the same as you…diagnosis was made based on Clinical symptoms.
‘Vibrations’..could be tremors…speak to your Neurologist because if this is the case it’s possible medication could be prescribed to help. And..tinnitus is often mentioned too.
General Physio will help keep muscles strong…but It’s possible Balance Therapy would be better…sometimes it’s possible to be referred to a NeuroPhysio..depending on where you live.
I’m not yet diagnosed with a specific type of ataxia, despite testing..but I experience mostly Vestibular issues and recently spoke with a NeuroPhysio..who I feel would be better able to help me.
I have a treadmill..but stopped using it when I realised the ‘vibration/pounding’ made me feel worse …especially my vision…I was coping with double vision and nystagmus at the time.
🙂 Some people do say they find a recumbent cycle more doable..but try one out first before making a purchase..not everything suits everybody.
I use mainly a walking stick myself..although I also have a rollator. Actually linking arms with my husband is often the most productive ..this stops me swaying and I have a more normal gait 🙂
🙂This link is to general exercises..but they may not be doable for everybody…if in doubt speak to your Neurologist
Thank you for a nice advice, I tried balance exercises, from the very beginning it was ok, but now it’s difficult as my toes somehow bend and unbend and I tend to sway from heel to toe. I was at neurologist and showed it to clarify if it something like dystonia, but he could not explain what it is. It is so frustrating. NHS is hopeless, I went to a private neurologist.I became very anxious and don’t know where to look for a help.
It can make a big difference if…the Neurologist actually Specialises in Ataxia. There is generally a long waiting list but..most of these Specialists work in the NHS.
It is quite likely that your ‘toe problem’ is linked to Dystonia..if this is the case treatment could be suggested.
Dystonia is a movement disorder characterised by involuntary muscle contractures that cause slow repetitive movements or abnormal postures.
Adult onset foot dystonia is generally secondary in nature and is associated with Parkinson's disease, trauma, stroke and other conditions. (It is also a symptom linked to ataxia).
There is no gold standard treatment for dystonia, but it can be managed in a variety of ways. A popular treatment option for focal foot dystonia is injections of botulinum toxin.
Simple orthopaedic intervention with braces can help manage the condition and lead to a more comfortable life.
🤔It’s possible you could be helped by referral to a specific department. This link explains what is available to help with foot problems…specifically Biomechanics. ..bear in mind it’s just for information so will probably not be appropriate for your specific location..
You may wish to look at the signs and symptoms of B12 Deficiency in the above link. The first ones are Neurological. Sadly B12 is not routinely tested. A good result - preventing cognitive decline - is 500+. Docs often say Normal/Fine/OK when a result is in range - it is where you are in the range that is key.
Thank you for reply. I tried for a while B12, it was in a form of spray. What do you mean 500 + . Is it in a form of tablets. I think the injection form is better, how it is possible to arrange injection of B12. Can a GP advise something or there might be private services. I live in Stratford Upon Avon.
When having a B12 blood test the result has a range which can vary from lab to lab. Usually around 180-900. So having a result around 500+ should enable enough cells to be nourished with B12. There is also an Active B12 test rarely done in the NHS which has a different range.
Did you have B12 tested before supplementing ? You can request copies of all test results with ranges, from your surgery - they are legally yours ! If result was LOW in range your GP may arrange injections.
I self-inject as mentioned and order on-line from Germany. Looking at the PAS forum here on HU will be helpful with up to date info on ordering B12. Check out the member Wedgewood who is VERY helpful.
Do explore the website I posted for you where you will learn so much more about B12 than I can write here. Under the heading Films you can see what happened to Dr Carr....B12 Deficiency can mimic so many conditions but sadly poorly understood by Clinicians....
I agree with much of what Wobblybee says. Everyone is different, even though there will be similarities. Fitness is good, but you need to find what suits you best and what you will stick with. Autoimmune ataxia is worth investigating, because although rare and difficult to identify there are treatments. Having said that, some neurologists are sceptical of the condition. Good luck.
Thank you for advice. I don’t think my neurologist will send me to investigate autoimmune ataxia, if he does not consider it is ataxia at all. He offered me to make new tests trough NHS, but the waiting list is about a year.
Time is critical in diagnosis, because even when treatment is possible damage may be irreversible. Waiting lists are indeed long, and some neurologists are more proactive than others unfortunately,
Definitely try a recumbent bike - I tried 1 at a gym before purchasing. Excellent for leg strength I've found but I used to ride a little and did Spinning. As WobblyBee said, we're all different, so it may not suit.
I cannot walk at all now, so a bit of exercise using my theraband (resistance band) or doing chair exercises via you tube, as well as the bike, all help cause I've lots of things going on ie dystonia, nystagmus etc alongside my ataxia but I just get on with it the best I can. No point in moaning. I have had metal pins and screws in 1 of my shins too since 2019 and the recumbent has definitely assisted my recovery but I always do exercise gently and listen to my body.
Definitely try a Neurphysio (not an ordinary physio), as they'll show you different ways of exercising and coping.
A few years ago I had an MS DVD (got it via Ataxia Uk) and that was quite good because they were quite gentle exercises. Don't need to push yourself too much to get results. Have a look on YouTube. There is even chair yoga!
🫤I have mainly Vestibular issues..an imbalance with my eyes and ears..and this imbalance is worsened by Cerebellar Atrophy. I tend to sit still far too much because it causes less disorientation but…in turn this causes stiffness and pain..which leads to worsening stability and worsening gait…I’m becoming increasingly less mobile
Hello Wobblybee, I was diagnosed with ataxia a month ago by a neurologist & unsure of it all. I am so off balance more when I go outside in open spaces, I have also tinnitus really bad on my left although on my right side it’s mild. I’m really not sure how or what happens. Is it part as my hands are very heavy at times with occasional tremors & sometimes strong. I always ask myself is this/that part of the progression. What time frame are the stages & what do I have in front of me. But away from all of this is there an App I can download so it’s easier to go to. Anyway Thank you & look forward to hearing from you
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