Ataxia UK
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Hi, I'm a newbie!!!

Hey there all!

I was told last year by my Neurologist that I had a " very definite bilateral cerebellar ataxia"??!! I had never heard of it before and now have a brochure from Ataxia UK, which to be honest, I've not read yet.

I'm still young (ish!), 41, but still really active. Unfortunately because of my balance issues I'm terrified of being in crowded places and stumbling / falling and hurting myself and others. I have bought an exercise bike and light weights to build my muscle strength. Does anybody else find this has helped? I also go to Physio weekly and they are working on my awareness. I also have anxiety issues, which is heightened by my balance problems, making me walk like a right one!! I'm not gonna let this hold me back, therefore any suggestions very welcome on how to manage, and hopefully improve quality of life!!

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🙂 welcome. Continue to stay active within capability👍 You’re experiencing challenging symptoms many of us are familiar with, and it’s often a case of avoiding certain situations just to have peace of mind. Keeping your muscles maintained should give you confidence🙂 Reduce stress levels, eat healthily and try not to overtire yourself 🙂xBeryl

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Itotally agree with wobblybee. Stay as active as you can andexercise as much as you can. I think most of us dislike crowds. I avoid situations where I can get bumped into as much as I can, but its not always possible. It's so embarrassing to fall in public. I resisted a walking stick for years and now have a walker and find it easier in public . Beryl has given you very good advice. Chris

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Welcome to the site!

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Did your doctor offer any information on the possible cause of your condition? I can only find one site online that has information on "bilateral cerebellar ataxia", and it seems to indicate that it is a result of some other illness.

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Hi, thank you for your reply. No, the doc didn't really tell me much.

I was told that my B12 levels were critically low and given a course of injections to be topped up every 3 months. I was also advised to improve my diet to increase nutrients. There has been quite noticeable improvement to myself and others in my gait. However, my spacial awareness is not good. Judging distance between objects is difficult for me.

Could you send me a link for the site you were looking at so I can check it out please.

TIA

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Here is the site, it's not a very good one, but it's all I can find that even mentions "bilateral cerebellar ataxia". It may just be copying my input and not actually looking up a reference:

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symptoms.rightdiagnosis.com...

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symptoms.rightdiagnosis.com...

B12 is listed as one of the causes in the link posted by sunvox ....

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Very good tips.

Other people are hopeless with coping and now I use a wheelchair when out, they cope much better - so wrong but they need help! A pole like stick then 2 helped me (still got stupid comments).

Stay active as long as you can. I dance (very badly) most Saturdays! x

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Sorry (lol hopeless) forgot to say Welcome x

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Whilst reading your post - Low B12 popped into my mind - and then I saw your other post. it is sad but there is also very little understanding of B12 Deficiency in the medical world - and people are often diagnosed with neurological conditions when B12 is at fault.

B12 is involved in the Myelin Sheath that protects the nerves and when there is a result below 500 and left untreated - it can become a neurological condition. If you scroll down in the link below you will see the signs and symptoms of B12 Deficiency - neurological ones come first.

b12deficiency.info/signs-an...

On the Menu on the Left there is a heading - Films - where you can view a video and see what happened to a US Doctor when he did not know it was B12D that he was suffering from .... he was almost paralysed and dying.

There are Guidelines for the treatment of Folate and B12D which should be followed by your GP. See second link below. Hopefully your Folate was also tested and treated if low. B12 and Folate work closely in the body in an important way. Folate/Folic Acid/B9. If you suffer with neurological issues then your injections should be every other day until symptoms stop improving.

b12deficiency.info/b12-trea...

onlinelibrary.wiley.com/doi...

I am a member of the PAS forum here on HU - Pernicious Anaemia Society - and I read daily of the lack of knowledge in the field of B12 and how serious a condition it can be.

Often with Low B12 it can be accompanied by Low VitD - and anti-inflammatory - steroidal - pro-hormone - so much more than a vitamin.

I found out about B12 through the Thyroid UK Forum - I was diagnosed with Hashimotos back in 2005 after a lifetime of poorliness. Then the research began ! Having had Gut TB in my 20's followed by endless surgeries for Crohns I am now without a Terminal Ileum - where most of the B12 in our diet is metabolised back to the liver. In all the years I visited Gastroenterologists I was never informed about the importance of B12. The story is too long for now - but I am now injecting B12 weekly as I am able to buy it OTC here in Crete. I have also read that my Ataxia can be caused by the Hashimotos and Gluten - so I tackle them all.

When you think of how many gut disorders there are - IBS - Colitis - Crohns - Diverticulitis and so on and I am thinking all these people will suffer with low B12. As do thyroid patients due to absorption issues. Even MS and Parkinsons in the early stages can be missed Low B12.

Every 3 months is NOT adequate .... apologies for the length :-)

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WOW!!! Thank you so much for your response, what an eye opener! Believe it or not, my Neurologist had written about the "critically low B12" as a footnote on his letter to myself and my GP. It was not until I contacted my GP to ask why they had not contacted me to arrange the appointment that they informed me it had been unfortunately overlooked. They asked me to go to the surgery the same day.

I had, I think, 4 injections every other day and now have to go every 3 months. They have not checked my bloods again since having the jabs. Do you think I should request that they check?

Again, many thanks.

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No - it does say in the Guidelines posted above - that your GP should have read by the way - that once on injections further testing is of little value. The results will be skewed. However that does not mean you should only have the injections every three months - that is a nonsense. As the Guidelines state - clinical signs should be considered not the blood tests ( or words to that effect - it is Number 1 on the list in the Treatment Guidelines - see above ) Your spatial awareness and other issues would still come under the neurological spectrum - in my non-medical opinion.

Did you have the Folate tested ? Are you supplementing ? Were you tested for PA ?

I know it is so much reading but it is the only way to stay ahead and information enables us to ask the correct questions. Always obtain copies of all test results with ranges so you can monitor your own health and spot what has often been missed. GP's have a habit of saying results are normal/fine/OK - when they mean in range. But hey it is where you are in the range that is the key to wellness and OPTIMAL health.

I am not a Medic just a Hashimotos gal - with Crohns and a B12 issue ! - you can click onto my name above in this post and read my edited Bio - only takes a couple of minutes ! Keep asking questions :-)

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Again, thank you for your really helpful info!

I've not had my folate checked, at least I think not. As to PA, I have no idea what that is! I'm gonna check your Bio out right now!! I am so determined to be able to walk in a straight line again. It's sad how much is just taken for granted.

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healthunlocked.com/pasoc

Here is the link to the PAS Forum - Pernicious Anaemia Society Forum here on HU. You can read so much about B12 - the first post sounds familiar :-) Lots of Information to the right of the posts to click onto.

Pernicious Anaemia is when the Parietal Cells in the stomach - not the gut - do not secrete Intrinsic Factor due to attacks from anti-bodies. So the tests are Anti-IF and Anti-PC - both can throw up false negatives. Testing for B12 Deficiency also includes Homocysteine and MMA ( urine test ) - if both results are raised it can indicate LOW B12 in the cells where it is needed.

When we eat protein the stomach acid ( how is yours ) - removes the B12 molecules away from foods and they bind together with Intrinsic Factor enabling the B12 to be transported safely out of the stomach - into the duodenum and beyond - to the Terminal Ileum where it is metabolised and taken back to the liver to be re-used. Clever stuff. Of course I have given you the simple version ! - it is a complicated topic. Have you managed to look at any of the links ?

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Simple version??!!! I've sent the info on to my Dad to read over. He loves a challenge!!

I have looked at the links and they are really interesting. The letter from my Neurologist did ask the GP to check my IF levels too.

I'm sure my Dad will have questions he will want me to ask, so keep an eye out for me again please!

Thank you Marz.

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You can always send me a PM - Private Message - Click onto my name and then - Message. I will send you a PM now - look out for a 1 over the Chat symbol !

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Have you heard of MTHFR? A deficiency of folate, b's not being absorbed in our body?

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Yes I have ...

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Hi, I have Cerebellar Ataxia type 3. I am now 34 but was diagnosed last year. I am finding doing exercise, and eating more fruit n veg, less sugar is helping greatly with my symptoms x

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Hi there! I have found adding more fruit and veg to my diet really helps me too. I find the exercise bike has really helped as my muscle strength needed some urgent help! Can I ask what you find your main symptoms and hurdles are? x

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Course, my balance when walking was my worst but that’s got considerably better at the moment. I still have to hold onto a rail when going up or downstairs, I also notice my hand coordination is bad as these are things that most affect me at work. I find it very difficult if someone comes towards me on the stairs and I have to change sides. My speech is also quite slurred when I get tired-I feel fatigued quite quickly compared to before but I try to avoid certain words. I think most people with Ataxia have similar, varying symptoms. This website is great, I’ve found it very helpful to know what others are experiencing, and how they are coping x

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You have literally described my day to day life in a paragraph!! Good to meet you! x

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Good to meet u too x

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Hello, I am a brand new member. I have gluten ataxia and suffer from many of the problems mentioned below (high gluten antibody count in cerebellum, seeing neurologist next week when anything else may be discussed- no gluten since Xmas has helped me hugely, but very, very slowly). My point is, I like walking too, but simply cannot anymore, until my husband founf a Trionic veloped which we bought- very expensive but I can go outside on my own in very quiet locations- up or road, or further if I am driven to a quiet and fairly smooth place. I am physically fit, but deteriorating in strength due to spending so much time simply sitting. It has been fantastic, I have the Sport version as we love stony places! The beach at low tide is a great place too, and I feel OK to be there. In fact, it is easier and more relaxing being out, knowing which way is up because of the stability and large wheels, than lurching from wall to wall inside my own home. Hope this helps.

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