Where from here?: A sports physio told me I had... - Ataxia UK

Ataxia UK

3,484 members3,834 posts

Where from here?

janyj
janyj

A sports physio told me I had ataxia- NONE of my doctors at surgery had a clue (and didn’t seem interested once they realised they hadn’t!) I want to investigate which ataxia and want to ask for a referral ( though I know at present it’s probably not happening) but could anyone tell me best place to ask to be referred to - I live in Worcestershire. Mine came on literally overnight when I found after walking a few yards I couldn’t get my legs to move. Unusually, I find uneven surfaces easier to walk on and hard flat floors make it much worse. Before this all started I used to scrunch my foot up in my shoe as if I needed to as shoe felt loose. When doing physio- squats I notice one knee is further forward than the other. Doc sent me to a hip/ back specialist who says hip bit swollen but nothing else. If I have one glass of wine my balance is like I’ve had twenty. It’s weird that I can always walk the first twenty yards ok ( although a bit oddly) but then it’s a real effort to walk without having to stop as legs won’t work/ shake. Just wondered if anyone else has this problem? Also, stairs are impossible without hanging on, legs shake and feel like they’re collapsing on me. Feel bad asking on here as I know compared to a lot of people my troubles are small xx

34 Replies

Oxford Ataxia clinic is where I have been. Ask your GP to refer you.

janyj
janyj in reply to cocoa

Thank you xx

I completely understand what you're going through. I have clear ataxia symptoms but it has been 9 months and I still haven't been diagnosed. The Neurologist is uncertain what the underlying cause is. I have been on long term sick leave and I want to go back to work! Ask your GP to refer you to a Neurologist.

janyj
janyj in reply to Lili986

Hi! Really feel for you! Believe it or not, saw neurologist first! He did mri, blood tests, the nerve conduction studies and couldn’t explain it! Sent me for physio - which I did and made no difference at all. It’s so frustrating isn’t it? I feel like I’m seen as a nuisance every time I go to doctors! He said it was good for me that nothing showed as it’s not something that’s life threatening, as those things they know about?!!

Lili986
Lili986 in reply to janyj

Same, my condition is not life-threatening but I have lost my balance and co-ordination. I used to be independent but now I have lost all that. The Neurologist is continuing with genetic testing but so far has found nothing. Are you seeing a physiotherapist regularly? They are the ones who can help you adjust the most.

janyj
janyj in reply to Lili986

No, physio was a limited number of sessions and they seem to think there’s no point when it makes no difference to my problem!

Lili986
Lili986 in reply to janyj

That's ridiculous! Can your GP not do anything else?

janyj
janyj in reply to Lili986

I’ve seen different doctor every time - all clueless, gone from it’s in your head- yeah right! To ‘ you need a back operation’ to no, just physio! After I saw the neurologist who also had no idea ( said I may never know as all tests were clear) doctors seem to kind of just hold their hands up and give up! I will pursue!!!

rideabike
rideabike in reply to janyj

Same here...physio did not help in the least.

janyj
janyj in reply to rideabike

Kind of think it’s something neuro somewhere - glass of wine and I’m really wobbly!

janyj
janyj in reply to rideabike

No, not at all! And I was a gym goer , healthy etc etc

12monkeys
12monkeys in reply to janyj

Don’t ever feel a nuisance, u have unexplained symptoms which aren’t right and need investigating, don’t be fobbed off, stand ur ground and try to get referred to ur local Ataxia specialist centre

janyj
janyj in reply to 12monkeys

I will! It’s so nice being able to talk with others who understand xx

Generally speaking, it can take a Specialist Neurologist to accurately diagnose Cerebellar Ataxia. There are many Neurological conditions that can ‘mimic or have overlapping symptoms’. At the moment it’s probably going to be a waiting game, but if these symptoms continue your GP should refer you for further investigation.I noticed you walk more confidently on uneven ground, and hard flat floors cause difficulty...People coping with ataxia generally say the reverse, I know myself how challenging walking is unless I’m on a flat even surface.

janyj
janyj in reply to wobblybee

Thank you xx

Hi, as wobblybee mentioned walking on uneven floors are absolutely impossible for me, and even if there's a slight slope I seem hypersensitive to it as if it's a mountain!! Only flat level floors for me ;).

There are specialist ataxia centres in the UK, and people often sing their praises on this site. I don't live in the UK so haven't been to one myself. The one in Sheffield seems to be excellent. Maybe you could get a referral from GP? I expect someone else could advise you better than me who has experience of them in UK

Xx

Thank you xx

To be honest I wouldn’t take a physios diagnosis seriously but I would definitely tell ur gp to refer u to ur local hospital Neuro department. It took nearly 2 years and at least 60 tests ie bloods, 4 mris, 4 lumber punctures at least 4 different Neurologists to diagnose and it was all to rule everything else out, it’s a very difficult condition to diagnose with symptoms changing over time to come too final conclusions. I hope u get answers soon and if u do have it, the lifestyle change is enormous but it’s manageable with the right support.

Good luck 👍

janyj
janyj in reply to 12monkeys

Thank you xx

Demand to be referred to neurologist. My GP was treating me for anxiety for 20yrs until i demanded he referred me to hospital.

Just get your numpty GP to refer you to Professor Hadjivassiliou at Sheffield teaching hospital. He specialises in all Aspects of Ataxia. Brilliant!

janyj
janyj in reply to Vert

I will , thank you!

Vert
Vert in reply to janyj

Forgot to say that there are also 2 brilliant specialist Ataxia nurses there as well.

janyj
janyj in reply to Vert

thats good news! thank you

Hi janyj,my symptoms exactly same as yours been 3 years now long hard road ahead im afraid.The nerve conduction doctor was the only one that mentioned ataxia,i asked gp for referral to ataxia clinic in london which he did i havnt had a beer for 3 years as i know i would fall over.Good luck for the future keep your chin up.

janyj
janyj in reply to Arlo20

Thank you xx

Hello Janyj

First of all never feel bad about asking anything on here that’s what it’s for some people will be better than you and some people will be worse. Nothing is a problem.

I’m not sure why you are seeing a sports physio I think a neuro physio would be better although I haven’t seen any physio because of good old covid.

I was diagnosed with SCA 6 in September 2019 but I also have dystonia although it will be March (I hope) until I know what type. Dystonia as you might know has similar systems to SCR but it can cause deformities in several parts of the body, with me its turning my right foot inwards, it also effects my eyes and my right hand but also like you I scrunch my foot when I walk. Maybe check on good old Dr Google on the website below.

What causes dystonia? | Dystonia UK

Alcohol effects several parts of the brain including the Cerebellum so if you have SCA and use alcohol it only takes a small amount and you get really dizzy and balance is affected.

Hope this is of some use to you.

Keep using this website and stay safe my friend.

Who Cares Wins.

janyj
janyj in reply to paul456

Thank you for the info- interesting about the foot scrunching!

Arlo20
Arlo20 in reply to paul456

Hi glad you mentioned foot crunching i can only wear boot type slippers and wondered why toe part doesn't last very long .

How strange, your feet all seem to do the opposite of mine. My feet sort of open outwards and my toes go upwards. I now have to buy shoes with enough room around the toes for them as they go up during the day. I've got big feet anyway so now my shoes are even bigger and I need enough room for a specially adapted insole too. Hahahaha enormous feet now!!!If someone touches the bottom of my foot they spread outwards!

So many different variants with this! I have flat feet so find insoles with the arch help but find shoes are then too tight across top! Basically live in trainers. Anything with a hard bottom sets the spasms off!

Yes, even with the same type of ataxia people seem to have different symptoms!

At least it's better understood now. I'm sure years ago we'd all have been diagnosed with MS!!

Hi janyjYou have had some good advice here, but I would add to this to not hang around waiting for some knowledgeable expert advice. My understanding is that ataxia usually does not come on overnight (but definitely not an expert) so might not be ataxia?

What I do know is because doctors rarely understand ataxia they tend to, shall we say drag their feet especially in these Covid times.

Be firm, even be a nuisance so that you get to see someone who KNOWS!

Unfortunately that ataxia does not seem to bring the same "sit up and take notice of this patient" ring to it as some other illnesses and conditions. Personally I think this is because the ataxia patients do not figure on the league tables, but then I'm just an old cynic.

Chase this in every way that you can with who ever will give you the advice you need. Be like a little terrier that won't let go! I'm a dog lover!

Take care and good luck x

janyj
janyj in reply to penelope2

Thank you so much for your advice! I had phoned my doctors to ask for a referral to an ataxia clinic for a diagnosis- doc calling me tomorrow . Need to be seen by someone that’s got a clue at any rate!

You may also like...