Just saying hi😄

[CraigJB]

Hi Guys

Just joined the group so hi to all! I'm Craig, 45, from Cardiff, UK.

I was diagnosed with ataxia, peripheral neuropathy & other problems about 10 years ago, caused (I was told) by chronic alcoholism since I discovered it aged14.

I've been totally sober now for nearly 4 years but I'm convinced my ataxia is getting worse despite total sobriety! I also take a regular vitamin/mineral supplement just in case I'm not getting enough Thiamine.

I get the feeling from my GP that they're not interested as it's my own fault! I've had no advice on exercises to keep my muscle strength up, in fact nothing at all except for the diagnosis following a CT scan!

I've given up on going out! Unfortunately I don't drive & nowadays even find getting on a bus pretty much impossible! I'm feeling kinda lonely, down, frustrated & isolated!

I've yet to look at the site to see what's going on etc. I guess, apart from saying hi, I'm asking what others do for self help & what, if any, tests can be done to verify that my condition is getting worse & what could be the primary cause, if it turns out not to be alcohol after all? Also, is there a way (medication, diet.....anything) to slow down progression of the condition?

I don't know if it's even related but most recently my vision is blurring intermittently & my speech is becoming noticeably affected with some slurring & an inability to get my words out 1st time.

Sorry for droning on but any advice, friend requests etc. greatly appreciated!

🙂👍 Craig

[wobblybee]

Hi Craig, welcome😊

Ask your GP to refer you to your nearest Ataxia Centre, or you yourself contact the Neurologist who diagnosed you, everyone should be reviewed yearly. It would give you the opportunity to ask questions😊 Don't hold back.

As a general rule, we're advised to keep as active as possible, within caperbility of course😊 I don't have to sit for long before everything seizes up😁. It very much depends on which type of Ataxia you have as far as speed of progression is concerned. Many people swear by certain therapies, or medications, or lifestyles. You just have to find something that works for you and stick with it😊 Most importantly, keep your sense of humour😊

Your GP could be able to refer you to a Neurophysiotherapist who would advise specific exercises for you, a regular Physiotherapist doesn't understand Ataxia ( many of us have found that out! ). Ask for referral to a Speech Therapist, you'll be taught how to breathe in order to regulate your speech etc.

Log onto ataxia.org.uk and see if there's an Ataxia Support Group you can access. If you contact AtaxiaUK they'll send you an information pack, including some specifically for GPs!😏

You can also find out lots of information about Ataxia, medications, diet etc. on ataxia.org the National Ataxia Foundation. As well as HealthUnlocked AtaxiaUK online support group, there's livingwithataxia.org and other Facebook Ataxia support groups 😊

Many of us have blurred vision, double vision and nystagmus,as though one wasn't enough🙄 If you do get double vision, the Eye Department at your local hospital may be able to help, I've been well looked after myself😊

There, I've 'droned on' 😉 I hope some of this is useful😊 xB

[CraigJB in reply to wobblybee]

Thank you for replying. I've been reading through the questions & wanted to message you anyway to say you're so informative, supportive and empathetic to so many people!!! Such an inspiration!

I have C.A, which may or may not be due to alcoholism. I've never really looked into Ataxia until now due to the deterioration over the last 'sober' 4 years & coming to my own conclusion that my C.A wouldn't stop in its progression when my drinking did!!

It's become evident that my total lethargy, apathy, chronic pain & fatigue are not totally in my head or due to pure laziness after all 😜!

Thank you also for the links to other sites. They will be very useful. I'm now going to demand to be seen & treated properly, with the respect all patients should receive, addict or not!

Believe it or not my G.P has never referred me to a neurologist, despite all my symptoms! I was diagnosed in A&E when I woke one day and couldn't use my legs!😳

I think perhaps it's time to change my G.P!! 👍

Thank you once again for your message & also everything you do on this site.

Best Wishes

CraigJB

"Commit Random Acts of Kindness"

[Rayy in reply to CraigJB]

I know how your feeling.from what I gather you've got to find the cause Bedford Dr's can tell you if there's a treatment available.I wouldn't consider a diagnosis in we acceptable so you need to Dr a neurologist and have all the tests.whatever the cause you deserve to be treated the same as everyone else.hope I was a bit helpful.

[silkwood]

Hi Craig

I went to Uni in Cardiff and also lived there for years. Also i have had Cerebellar Ataxia for 8years. I am a recovering alcoholic and have been sober for over 10years.I was told the same thing but in my case I do not think the alcohol caused the CA but I don't think it helped. I really made the most of my early years with Ataxia and I urge you to do the same.I think mine is a brain disease.I also think you get caught up in guilt. You are doing really well in your sobriety. Keep that up and you will inherit the keys to the Kingdom. The CA is in my case a physical illness not a punishment.Exercise to keep your strength up.Doctors mean well but I don't think anyone (except a fellow sufferer)knows the frustrations of a loss of balance etc. Peripheral Neuropathy must be awful-what a nightmare!

[CraigJB in reply to silkwood]

Hi Silkwood

Many thanks for your reply.

Yeah, like yourself I don't think alcoholism is/was the main reason in my case for the C.A but it certainly didn't help. Unfortunately I am not educated enough on Ataxia yet to gage where I am in the condition. Things aren't good but could be worse, y'know? I always try to be positive & am loving my sobriety! I've been to hell quite a few times so every day is always to be thankful for. I would rather chop off my right hand than be where I was with my alcoholism 5 years ago! Congratulations to you too, over 10 years of sobriety, well done!

Nowadays my balance & coordination are terrible, I rarely go outside the front door these days for fear of falls & lethargy. And strangely (laughably), I don't like people to think I'm drunk!! 😜 I broke my shoulder only a couple of months ago due to, only very briefly, not supporting myself when standing.I'm so lethargic all the time & (there must be a word for it) physically & just mentally unable to do very much. I have to force myself to just get off the settee & go to bed, much easier to stay where I am. I bought myself an exercise bike, being concerned about muscle wasting but my legs shake uncontrollably, making it impossible to use! Does anyone else find everyday activities & social events absolutely exhausting? Then my Mother, who I'm very close to & stayed with me in the depths of my alcoholism, tells me I'm

lazy for not shaving! 😄 I don't want to tell her things are just going to get worse & googling Ataxia might help her to understand!! I'd rather she doesn't know for now - which is bittersweet because I'm single and have the need to express how I'm feeling sometimes. My partner died in 1995, which just spun my (already problematic) drinking totally out of control to another level completely!

Strangely, alcoholism gave me a gift I consider more precious than anything, the teachings of The Buddha, whose philosophy for living I try my best to constantly be mindful of.

Where were you living in Cardiff? I've travelled extensively in my time, living in foreign countries for a few years at a time, but I always end up in my hometown! The Welsh have a word for it - hiraeth, there's no direct meaning but it kinda means 'a longing for home','having a place in ones heart'. Anyway, I've waffled on long enough & probably bored you stupid. Thanks again silk wood. Many good wishes to you. Metta

CraigJB😄

'Commit Random Acts of Kindness '

[ceri52]

Hi Craig. There Is an Adult Ataxia clinic in the UHHW. Its run by an Neurologist specialising In the Ataxias. His name Is Mark (I forget his last name).

Ask to be referred to him. I live in Caerphilly. I,ll inbox you my phone number.

[Rayy in reply to ceri52]

My Dr at uhhw is Mark wardle I've only had 2 neurologists but he's is by far the best one.in my opinion having a good sympathetic,knowledgeable and keen Dr makes a massive difference.

[Hidden]

Hi Craig

Because ataxia of any flavour causes brain cell death it is generally thought to be progressive. Lifestyle choices make a difference particularly if they also attack the brain.

Symptoms are all physical and what you describe is common to many of us on here. When feeling lethargic and low in energy it seems unkind to tell you to do more! That is however the answer. Have a look at my site for some ideas on what to do.

HTTPS://Ataxiafightback.wordpress.com anything physical will also help your brain make new connections and avoid the broken pathways.

Good luck and know you are not alone with this now you've found us.

Nigel

[Missile]

Hi Craig, the consultant to ask to be referred to is Dr Mark Wardle at Cardiff UHWhe has been truly great with me. I live in Chepstow and have been trying to find a diagnosis for 3 years. It so helps to see someone who understands. All the best.

[dlhfeldman]

Hi,

I am a physician in the US. Progressin of symptoms despite sobriety doesn't seem right. Have you been to a neurologist?

[poggla in reply to dlhfeldman]

All the symptoms sound exactly like my husband...couldn't walk...ataxia..perphiral neuropathy. ..drop foot...essential tremor...nystagmus and seizures and hallucinations. ...now on thiamine supplements and vit b due to b1 deficiency or wernickes encephalopathy which is very rare but also very dangerous and not many doctors notice it until its too late...my husbands symtoms got better 21 bags of pabrinex later but left with deficits...ataxia and peripheral neuropathy and not to mention  few others....that was 9 months ago...

[CraigJB in reply to poggla]

Good luck to you both!!

[CraigJB in reply to dlhfeldman]

I'm awaiting an appointment! 

[jneilw51 in reply to dlhfeldman]

Hello, Dr. Feldman. About a year ago, I mentioned, on this site, that my alcohol-induced Ataxia symptoms seemed to, rather gradually, be getting worse despite my total sobriety for several years. The Administrator of this site responded that such a situation did not seem right. Having a somewhat active imagination, I envisioned possibly having a tumor, infection, or even a parasite in my cerebellum. So off to a Neurologist I went to get some answers! After a Cat Scan (An MRI was not possible due to hardware in my knee), Dr. Dilawer Abbas told me that I had damage to my cerebellum caused by alcohol, but no infections, tumors, or parasites. He added that it is normal for the brain balance center to shrink with age. The average person has reserve space in their brain, so that the effects of shrinkage may not be seen for a long time. In my case, he said that my reserves have been destroyed, so any visible symptoms, or increase in symptoms, caused by normal shrinkage could occur at any time. It was not the news that I wanted, but pretty-much made sense to me. My family doctor did not seem to know very much about my alcohol-induced Ataxia either. It is not that surprising to me in light of how extremely-specialized medicine has become.

[jneilw51]

Hi, Craig. My name is Jim, 64, from Indiana in the US. You seem to be a little young to be suffering from alcohol-induced CA. I started getting symptoms about 10 years ago. My Neurologist explained to me that people, as they age, lose cells in their balance center. But, most persons have way more cells in their balance center than they need until they get fairly old (Like well into their 70's). That's why you don't see that many people having balance problems until, at least, they get into their 70's. According to my Neurologist, alcohol permanently destroys cells in the balance center of the brain. The result is that, when a person naturally begins to lose cells in their balance center, the alcohol has destroyed any reserve capacity that the balance center may have had. So, as soon as a person is old enough for their balance center to begin to lose cells naturally, that loss immediately becomes visible through physical symptoms. Because it is normal for us to lose function in our balance center with age, physical symptoms like balance loss will get worse, even with no additional alcohol use. Sorry about that bad news. But, people on this site have helped me to realize that I can still make a decent life for myself, even with CA. I hope that they can do the same for you, Craig.

[CraigJB in reply to jneilw51]

Thanks. Very interesting, I'm waiting for an appt. with a neurologist, I'll bring it up.

[medea]

Hi Craig,

I coordinate the SE Wales support group me - we usually meet in the centre of Cardiff. if you want to PM your e-mail address I could put you on the mailing list?

[CraigJB]

Hi medea

I've PM'd you my email address & any information you can forward to me will be greatly appreciated!

Thank you for your very fast response. Kind regards

CraigJB

[poggla]

Hi there....

My husband was admitted to hospital last August with thiamine deficiency due to alcohol dependancy. ..Dr didn't prescribe him thiamin when detoxing...ended up unable to walk or talk (ataxia)...nystagmus (involuntary movement of eyes)...hyperthermia...confusion...

hallucinations....tremor..

He fell over and spent 12 days in hospital with diagnosis of wernickes encephalopathy due to vitamin b1 (thiamine deficenincy) he has been told he has brain disorder and brain damage..

I had to request a referel to a neurologist as u need someone u can go to that is experienced...only prob I have is wernickes is rare and not many Dr's know much...my husband is left with deficits...He has ataxia walks with 3 wheeler...can't walk unaided...has drop foot...peripheral neuropathy...epilepsy/sleep disorder as theure not sure...bells palsy and a benign essential tremor...All brought on by a simple lack of vitamin....

Hope u find some answers...

[CraigJB in reply to poggla]

Good luck to u both! Thanks for the info'.