Spinocerebellar ataxia type 6

Hi ev1 I am desperate for help. And advice...my mum has sa6 and I have been diagnosed for 2 years I am 43, I get so much pain in my legs especially my left leg my knee down to my foot mainly...I do drop things I can't walk in a straight line half the time,I do get dizzy spells,but my main issue is I get these funny turns as I call them.it starts off with feeling heady and a bit of a sore throat..pain in my neck..funny tast in my mouth..aches and pains in my body and I'm in bed for a couple of days as I'm so tired...it feels like a bit of the flu...please tell me if any other sa6 suffers from this...it comes and goes lasts about a week..then I might not get it again for another 4...5...6 weeks and then it comes back..I have been to my Drs and they have run blood test and taken me off tablets to see if anything changes but it's still happening and my bloods were clear ...I'm desperate for answers it's happening again right now..please help..thank you

22 Replies

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  • First thing is don't panic. I have SCA6 and mine was a gradual thing with no bouts of good, bad days. Mine started with losing my balance and not being able,to get down a step without help. you need to be referred to a neurologist. If your mum has been diagnosed was it through genetic testing as is the only real way to diagnose? If so you will be able to fast track and demand gene testing.

    You may be over thinking it so try not to worry before any clear evidence. A blood test won't show Ataxia as SCA is genetic so request that.

    Good luck and try not to worry xx

  • Hi thank you for your reply...I might not have made my self clear..I'm good at that lol...I had the genetic blood test and it was positive that I have sca6 that was two years ago...I was having balance problems and my legs going out of zinc when I walked...I can cope with knowing I have sca but I can't cope with the feelings of not feeling well in myself like getting really hot with a heavy head neck pain it is a feeling of the flu....I have been back and fourth to my Drs with this and him doing blood tests and that for thyroid and celiac disease and other stuff ..but it comes up with nothing...as I say it lasts about a week and goes..but comes back maybe 5 6 weeks later...I was under a neurologist but as I missed two appointments through no fault of my own they chucked me off the list :( do you ever feel ill with your sca 6 like the flu symptoms...the dr told me to come on this site to talk to people and see if they experience any symptoms like I have..my body and brain feels so tired I have to stay in bed for a day or two.

  • Hi sorry my bad.

    I have days when I feel ill and can spend days at a time in bed. Most of mine was meds so I cut them right down and I make myself do stuff.

    I get hand , knee, leg, neck pain etc and feeling like my head weighs a ton. Lots of blood tests but like you nothing, it's so frustrating x

  • Thank you so much for getting back to me,so do you think it's the spinocerebellar then or something that the Drs just don't know what's wrong? It is very frustrating .

  • Hi Kareen.

    I sometimes think that with the Ataxia being such a rare thing that the symptoms can manifest themselves differently in everyone and we just accept that it's the SCA. I get terrible pains in my hands especially in the base off my thumbs that the G.PP says is Carpel tunnel, Neuro says it's not, possibly Peripheral neuropathy, Physio says its some trigger joint thingy as my thumbs and other fingers lock however; my Mum who has SCA undiagnosed as her G.P who is an idiot and has diagnosed her with "vertigo", gets the same pains and she had surgery for Carpel tunnel, which funnily enough didn't work. she now has a new G.P and is being referred !!!!!!

    We both get sore, burn like pains on the right side of the face which I'm told is Peripheral neuropathy and we even both get itchy "bits" (sorry) in the same place. When we see each other and go out we look like a couple of book ends with our rollators they're just different colours.

    It may be the SCA as my symptoms change and then when something new happens we just put it down to the Ataxia.

    Like Beryl said (and she is an oracle) see your GP, try to keep a diary so you can see exactly what and when is happening it may help.

    I'm very lucky, touch wood, I take so many vitamins I haven't had a cold or flu or chest infection for years but I do get the "flues, hangovery" feeling every so often and then I usually fall over. Take care and good luck. Keep us informed xx

  • Hi bevvick thank you for all you say it is helpful to me..my mum was diagnosed with vertigo for years and about 4 years ago she got diagnosed with sca6 ..I keep going to the Drs I live at the Drs lol like we all probably do lol..he's a bit lost with all my symptoms he's tried all he can to find out what's wrong but has come up with nothing :( I'm gutted as the yukky feeling I get is stopping me from planning things ..because when I get like this I can't do nothing I have to keep having time off work...the flu hangovery feeling u get please can you describe how you feel to me..I'm sorry to be a pain but I need answers in my own head about how I feel ..thank you..I did have a giggle to myself when reading your message about you and your mum walking with ya different colour rollaters lol :) one of my legs is weak I was told by my dr the other week that its weaker..and that's the leg I get so much pain in and I get pain in my foot and have to hold on both sides while walking down the stairs ..what a pain in the Arse all this is sigh sigh sigh lol xx

  • I am also an itchy person..my arms chest head and back I'm sure people think I have fleas especially if I'm on a bus lol

  • Hi Kareen.

    I get completely and utterly knackered and just ache all over and I also get a feeling of a heavy pressure on my head like I'm wearing a head band all the time. I get spastic like feet when they turn inwards and I'm in agony and can't move them so my husband has to rub them until it goes, I get terrible leg and knee pain and if I've stood for too long then I'm in absolute agony. I suffer with depression as well so I'm a miserable buggar most of the time.

    I think the itching may be down to my meds but I'm not sure. I'm also easily startled and when I am I jump really bad and it can make me cry easily.

    Blah, blah, blah x

  • Omg omg apart from the feet going inwards it's like your talking about me..wow..this is going to sound horrible but I don't mean anything by it ..but I'm so happy u told me that omg I thought it was just me and ,,,I don't know what to say...thank you so much for telling me xxx

  • Ha ha my evil twin. Plus don't forget the shitty hand pains, ringing in my ears 24/7

    No sex drive, sore eyes and pain, wobbling when standing and sometimes my legs don't follow my body if I turn when I'm walking and then I fall over. Think that's it lol

  • Lol. The no sex drive thing definitely my poor husband 3 years and still counting ha ha...when I walk round corners I tend to sort of stop lol unless I'm holding on to my daughters lol.and I also can't look left or right while walking as I will end up in the road or into someone lol I'm just starting to get over my crappie feeling another few days and will be sort of ok..until the next time..I'm wondering if I am doing to much and making my self knackered that I get these funny turns as I call them..I'm a cleaner which is hard work and I can't cope doing it anymore :(( I keep having time off my energy levels are so bad sometimes ..x

  • Do you know why we get these feelings why we feel so crap? I can't find answers anywhere x

  • It's because of the damage to the cerebellum and the different nerves that are affected to the different parts of the body, I think it's different for different Ataxias. Have you googled it or been on Ataxia UK website it's got good info also Bens friends has a forum just for Ataxia? It's very good on there x

  • It is so frustrating!! What is the type you have and was it diagnosed by blood tests? How long have you had the ataxia and his old are you? What about the Amphra? Or baclofen or gabapentin? diannewhitehurst1978@yahoo.com

  • Yes I do!! Sometime I can sleep through several days and then sometime I cannot sleep at all.

  • I have read that lack of vitamin E and B-12 and zinc and vitamin shortages and gluten allergy an all cause ataxia and poisoning of certain medications or poisons. An cause ataxia. Plus Ms and brain problems of spinal

    Problems? Is all of this true? Also Amphra and bacolofrn and gabapentin . Is all of that true? Where is the best place to get the type diagnosed? Are there 7 types? diannewhitehurst1978@yahoo. Com

  • Hi😊

    Log onto ataxia.org the National Ataxia Foundation. This is in the U.S. You'll find many helpful links to Neurologists, Ataxia Centres etc. There's a page on using Medication and Therapy to treat Ataxia, how to claim disability, and more.

    We've been told that over 90 types have been identified, and counting. Currently, there are 6-7 thousand Rare Diseases identified.

    ataxiacenter.umn.edu/abouta... gives information on SCAs 1-32.

    😊xB

  • Hi Kareen😊

    See your GP, it's possible you could be prescribed medication to help alleviate symptoms if they're ataxia related. In any case, they may be totally unrelated, it may give peace of mind to speak to your doctor.

    I don't know exactly where you live but, if it's in the UK you can ask your doctor to refer you to your nearest Ataxia Centre. Or, you could contact your Neurologist's secretary and request a more immediate appointment 😊xB

  • Ataxia ab me miserable legs at night and cramps in lower legs and right leg actually not a good leg but I could walk if I could. My balance will not allow.! I have always been a fast walker but could never tread water as an adolescence growing up. Literally cannot walk because of balance. I can walk as long as I can hold on from one thing to another. But I could not think about just walking off without holding at all. Toes are so numb on right foot that I cannot move them . I ant to walk so bad. My bladder does not hold and darkness does affect my balance. My entire right side feels like I have had s stroke or a seizure on the right side. I went immediately to my MS doctor I. Atlanta and told him what happened but he did not suggest any tests. A dr. Here in Columbus looked for Lucunar stroke with MrI but found no evidence. No MS in my family or ataxia at all ! Does anyone have any suggestions? diannewhitehurst1978@yahoo.com

  • Hi,

    Reading your symptoms I can suggest that you ask your doctor or neurologist for ceris medication to help with your bladder prob. Solved mine completely.

    But what is really amazing is that in Feb this year I had a problem with all the right hand side of my body. I could still talk though. My gp was sure I had had a stroke and sent me for tests. It definitely wasn't a stroke but I never got a real reply to what it was. The neurologist just said it was related to my ataxia but I don't know how or why!! I have unknown type of ataxia. The neurologist says its genetic from recessive gene.

    The stroke effects did slowly wear off over a period of about 2 months.

    I really would like to understand more but I'm not sure that the Drs do.

    I really try not to focus on my difficulties and I had even forgotten about the strange stroke episode

    Good luck to you

  • Dear Kareen, I have Sporadic Cerebellar Ataxia (unknown cause, progressive, symptoms 24/7) diagnosed eleven years ago, although I had very minor symptoms starting about eight years before diagnosis. No one in my family, as far back as we know, has/ had ataxia except me. I've had genetic testing for the known dominent and recessive types of ataxia which was negative. I'm hoping to have genetic "genome" testing, as it's more specialized (?). My neurologist thinks I may have a rare recessive type of ataxia. Although there's no cure, it would give me peace of mind to know why I have this. I also have grown children and grandchildren and pray they never have to deal with this! As Beryl said, ataxia is very rare and the different types effect people in different ways. Talk with your neurologist and/or GP about pain meds to help you legs. In terms of feeling ill every few weeks I don't know what that's all about, although I suspect it's related to your ataxia. My best to you...,;o)

  • Hello to everyone that has replied,and I am so sorry I didn't get back to some of you,I have had a bad couple of months with depression,I walked out of my job two months ago and have not had a funny turn since..but I still don't feel great..I think working even for the 4 hours a day that I done just took it out of me.i feel sick most days and the pain in my legs are worse.whenever I get up from sitting,I'm like an old lady.i got offered my little job back and I'm going to give it another go,so I will see if my funny turns come back,(which I'm dreading) I wish ev1 a happy new year.xx

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