Late on set Cerabeller Ataxia.: Hi everyone, I was... - Ataxia UK

Ataxia UK

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Late on set Cerabeller Ataxia.

Pacitto
Pacitto

Hi everyone, I was diagnosed with the above early this year through an mri at Salford Manchester. Never heard of it but got in touch with Ataxia UK. It comes in attacks and my balance, speech, tremors are getting worse. No help no meds, but I do have major back spinal stenosis and a few other spinal problems. The same time of diagnosis I suffered from my left leg numbness, ankle problems and sciatic nerve only on my left side. To say I can no longer walk or hardly at all is something which is a huge problem.

Question. Does this happen with ataxia or is this my spinal problems do you think?.

I have asked my gp for a referral to Sheffield. I am 69 years old up to last year could walk quite a bit.

Tha is guys.

19 Replies

This sounds very much like me, I was diagnosed 4 yrs ago never heard of it. My attacks also come in episodes, I also go to Sheffield and it seems I have EA2 (EPOSODIC ATAXIA)

As far as your mobility mine has gotten worse over time I now walk with a rollator, my left side is also my worst side

Good luck with Sheffield you will definitely get ansas 100% recommend it 😊

Pacitto
Pacitto in reply to claire01

Hi claire01 thank you for your reply. Yes it does sound similar. I am hoping for some answers so Sheffield does seem the way forward.

Thanks I am hoping I guess to understand it more by trying to communicate with others who have ataxia

Thanks again.

I’m 62?not sure if I make it one year getting worse and worse

Pacitto
Pacitto in reply to Sewanee

Thanks

auntiesally
auntiesally in reply to Sewanee

same age as me.

Good Morning Pacitto,

I too have Late Onset Cerebellar Ataxia Syndrome, diagnosed 11 years ago when I was 61. In addition (approximately 8 years ago) I had an operation on my back to relieve a Stenosis (Vertebrae 4 & 5) which had been causing numbness in my lower legs - nasty in combination with Ataxia! I was told prior to the operation that the majority of people would experience significant relief from the numbness for about 10 years. So it has proved.

However my Ataxia has undoubtedly got worse in that I have had 6 falls in the past 9 months, the only serious one resulting in a sprained ankle. Nonetheless that is 6 more than I'd had in the previous 10 years since diagnosis.

I have progressed from just using a walking stick to acquiring a rollator in August which certainly helps me maintain balance and also provides a seat when I need one.

It is fair to say that until this year I have soldiered on, pretty much as normal and I manage 3 or 4 visits to the gym per week and weekly participation in a Seated Pilates Class, all of them very helpful.

I believe that every one of us is different and I know that my experience will not necessarily apply across the board. What I would like to say is that we all have to have our own strategies to address our own individual symptoms and condition.

I attend an Ataxia clinic at the Wessex Neurological Wing in Southampton Hospital every year. Last year their assessment was that there was no discernible deterioration - I suspect this will be different on my next visit in March 2020!

I had a 2 week holiday in Spain in October and currently already booked for another week in January. In fact we've been to the same area each year for 8 years and it has been interesting that with each visit the distances I could walk have been reducing (due to fatigue) and my gait has become more erratic.

Whatever else, one must stay positive!

I'm not sure how much this helps but so much rang bells with me I had to write.

Regards, Derek.

Pacitto
Pacitto in reply to woody1404

Thanks Derek for your reply, I appreciate the info.

I was diagnosed with it too. I’m afraid it does go worse but I can still manage to walk. I have a rollator and scooter. My right side is worse and I am constantly bruised. I have had it for 4 years. I cannot write at all. I don’t know why you cannot walk. Moving up north to be close to my family. Good luck in Sheffield Pacitto. I am 67.

I think it is the stenosis, which salford said they could do nothing with. Looking into this.

I too was diagnosed exactly 1 year ago at 64. Can walk holding onto the arm of someone or short distance on the flat with a stick but not down hill. My left side is weakest and leg regularly gives way on me. In doors I furniture walk and often walk into door frames/walls etc. I have an appointment at Queen's sq, London this week for nerve testing.My speech comes and goes on a daily basis, not necessarily just when tired, my writing is poor and I am clumsy and heavy handed. I swim twice weekly and do a pilates class once a week and exercse cycle daly.

Have to keep postve, good lck.

Pacitto
Pacitto in reply to Pussycat1

Thank you for your onfo

Sorry, keyboard playing up this morning, missing vowels out, not me this time!

Hi folks,

Great to see everyone sharing information, but just a point of clarification. There are considerable differences between the types of Spinocerebellar Ataxias of which there are several dozen that have now been identified. There is also considerable difference amongst the hereditary ataxias depending on ones CAG count which is a genetic measure of the severity of the disease that can be determined by a blood test for some SCAs. Also, some of the ataxias progress quickly and others progress slowly and all have different symptoms with some overlap namely the trouble with gait hence the common term "ataxia". Being able to identify and share the name of your particular type of SCA is helpful. Unfortunately because of the rareness of the disease doctors are often not familiar enough to properly identify and diagnose the particular type of ataxia one has.

Joe in NY

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PS Pacitto - I suggest reading my primary post as it contains a great amount of information some of which may be helpful. I have late onset SCA1 and have managed to eliminate my symptoms at age 53:

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healthunlocked.com/ataxia-u...

Welcome to the club Pacitto. I was diagnosed as having SC Ataxia when I was 68 years old, I am now 76, so the moment of diagnosis isn't the end of everything, though in truth it is the end of quite a lot.

As this horrid condition affects so many differing people in so many different ways its difficult to offer any advice which would be positively beneficial to everyone. There is one thing however which I feel we all probably do or would benefit from and that's regular exercise. Most days I attend the local gym, following the same routine, viz-a mile on the treadmill, leg-weight exercises and a ten minute cycling session. I do really totter perilously from machine to machine. I believe however that apart from ensuring the blood keeps on circulating, the leg strengthening effects of what I do helps me to sustain a balance which my brain insists on removing.

Good luck! I'm sure you'll find this forum helpful as do I.

Cheers

Piero

Pacitto
Pacitto in reply to Piero

I appreciate all your replies, because I am in the dark and don't know which type etc, that's why I wanted the referral to Sheffield. I am in the Oldham area, even though diagnosis was at Salford I was told by the urologist there was nothing they could do. No info nothing except get referred to physio, been there done it no help. Until I joined Ataxia UK did I know more about it.

I also loose my speech stumble with words, and yesterday with hubby stood in boots and didn't have a clue where I was, it was like walking on air. Quite frightening.

Sorry for long post xx

Dear Pacitto, I was diagnosed with Sporadic Cerebellar Ataxia (unknown cause, progressive) at 49 years of age, although I had extremely minor symptoms starting at about 43 years of age. I had genetic testing over the years for the more familiar dominant & recessive ataxia's, which was always negative. Then in 2017, I had genetic exome testing and a single Niemann Pick C (NPC) gene was found. NPC is recessive & extremely rare, especially late/adult onset. Therefore after a skin biopsy followed by a blood test, I was positive for NPC. It was ultimately determined that I not only have a single NPC gene, but an unknown variant as well! Anyway, my ataxia is due to NPC disease. My ataxia effects my gait/balance (I use a quad cane (stick) but usually a rollator to keep from falling), dexterity (writing, printing, fine motor skills), speech (slurred), swallowing (coughing and sometimes choking) and vision (especially vertical vision, as it's hard to look up or down which is a hallmark symptom of NPC, slow to focus). I'm almost 66 years of age now and my ataxia has progressed (gotten worse) over the years. I try to exercise (safely) each day for strength and balance! I'm always pretty much the same and my left side is a bit worse then my right. You said your ataxia comes in attacks, which I believe might be episodic ataxia? My best to you..., ;o)

Pacitto
Pacitto in reply to february

Thanks February for your post. Sorry to read your post and all the others as well. It seems there are so many varients and I am just lost for words to express how much you must be all feeling. As a newbie can I say your all fab and a big thanks.

P. S.-I also want to say a HUGE welcome to this site! You'll find many lovely people on here! Thank you for your kind words...

One other thing - at the Ataxia UK conference early October it seem that the number of variants of Ataxia is now almost 200! Consequently the odds on different contributors having identical symptoms are astronomical. In addition that means you are by no means certain of an exact diagnosis.

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