i think i have episodic ataxia

[daz01279]

i think i have episodic ataxia. i can not walk much and i start thinking i was going mad. now its about the doctors to do something. i have been bad for years and i now am 42 years old. now could my kids have it. just trying to get the doctors to do something for me. its been so long and i get very ill. i need help

[mhairi26]

What other symptoms do you have? I am also 42 and have suffered since my early teens? Iwas only diagnosed 2 years ago after i read a blog by mark dias (google him) and i realised he could have writing my autobiography. I took my diagnosis to my neuro and it was a eureka moment for him. I agree it is very frustrating but there could be several other conditons out there that can cause your walking to be bad. Hang on in there and ihope you get some answers soon. X

[Piero]

You do need help and support. At this stage your main focus needs to be on pressing your clinicians to provide you with as clear a diagnosis as is possible, provided you understand that if you have some form of ataxia there is little medicine can do other than to diagnose it. Good luck and remember that there are thousands of us out there who live reasonably full lives despite our condition.

[daz01279]

i have a brother who has now been told he has episodic ataxia. and he has been told he could of had it in his teen's. and at first it took them some time. but with me i was ok but when i was 15 years old i was told i had epilepsy. and i have been on pills for epilepsy. but i have seen doctor after doctor over the years and i was saying to them. more is going on here my leg's was going like i could not tell them what way to go and i keep droping things all the time.i always feel dizzy and i do also have difficulty in walking and i am also getting sickness.and i have loss of balance and coordination and tightening of muscles and nausea and headache and difficulty in speaking and some timne's i can not walk at all. over the year's it gets so bad. sometimes i look at the doctor and she her on her pc putting in what i am saying to her. and i think she think i am makeing it up or i am going mad. but it is so real. i do need help. i am married with 3 kids now and i love them all so much but i am now worrying that one of my kids are getting it as he has now doing the same way how mine started. i have try to kill my self before but it not go as plained but i am also in a lot of pain as i have other things too. i think some time's i can no longer cope with this. i need someone to help me as i need a friend who under me and to be there for me. when i became ill i lost all my friends. as soon i become ill i never ever seen them again.

i hope one day i get help that i need.

[cclive35]

Hi daz ive had attaxia since brain surgery in 90,s and im 41 now. As for the kids i dont know but im sure you, like me havnt had much luck with doctors . They make out they know how to deal with attaxia but 99 percent havnt a clue as im sure you know. Awareness is getting there but it will take time

[daz01279]

yes. i feel down a lot and i cry when i can not do things but the doctors do not know much about this and so u feel like u are going mad.

[cclive35]

Not after so long, yes im alone and have done the crying and have just realised there is no ooint trying to explain , others know best. Unfortunately others dont!!

[HarryB Administrator]

Hi Daz

I am sorry you are having such a tough time. Do you see a neurologist?

Harriet

[daz01279]

i think i seen one of them in the year's. . i have been so ill in the years and i just am fed up with doctors as they say there is not much funding to do all the test's on me. i just think it comes down to money. not sure how much more i can take. i know i have got episodic ataxia

but its just getting people to do something.

[HarryB Administrator]

Hi

I think given your symptoms and the fact your brother has been diagnosed with episodic ataxia, you have every right to be tested for it. You could ask your GP to refer you to a local neurologist or alternatively you could ask your GP to refer you to one of the Accredited Ataxia Centres in London, Oxford, Sheffield or Newcastle where you would see a Consultant Neurologist who specialises in ataxia.

In any event it is essential that your child who is displaying similar symptoms is further investigated and I would advise taking him/her to see your GP as soon as possible. If it turns out that they have an episodic ataxia, they will need to access appropriate support for example in the education system.

Best Wishes

Harriet

[february]

Hi Daz01279, I'm sorry you're feeling so bad! I don't have Episodic Ataxia, as I have Sporadic Cerebellar Ataxia (unknown cause). I do know ataxia is extremely frustrating and challenging! My suggestions to you: make sure you're seeing a neurologist that specializes in ataxia. You may be able to talk with a genetic counselor with your concerns about your children, even if you are not genetically tested. Also, there are specialized doctors (psychiatrists) that can help you feel better emotionally and deal with your ataxia. I've been on an anti-depressant medication for years. It's not a "happy-pill", just helps me cope, concentrate and not feel so overwhelmed by my ataxia. Remember, depression is caused by lack of a certain chemical in the brain. Any long-term illness (ataxia and the like) can compound this. There's also bio-feedback that can be helpful, if you don't want to take anti-depressants. You owe it to yourself and your family to feel as good physically and emotionally as possible! Do you have a patient advocate, like a family member or a friend that could help you coordinate your care? Sometimes having someone "help" with this takes some of the pressure off of you. You are not alone in your journey, as this site can offer support and understanding for your ataxia! There's also a good US (where I live) site called "Living With Ataxia" as well as the "National Ataxia Foundation" (NAF) that you may find helpful My best to you...;o)

[mhairi26]

Your treatment by your dr is terrible especially since there is family history. Keep on fighting and if you still get nowhere change your dr to one who will refer you to a neuro. Your symptoms certainly sound a lot like mine i have ea2. There is also a support group on fb specifically for ea. There is always someone on there to answer your questions. Good luck.

[daz01279]

i would like to thankyou all for replaying back to me and knowing that i have other people to be here for me.. it feels nice to get it all out on here as i lost all my friends years ago over me being ill.

[mikebo]

Hi daz01279 its great to hear so many people giving you good advice. My wife(41) has sensory ataxia. Think that's the term used when they're not sure what type it is! Her symptoms started 7 years ago. She now drives hand control car and has just taken voluntary redundancy as she can no longer stand long enough to do her job. HR were a waste of time. She take vitamin C and D supplements which she says really help her energy levels, not sure if that's something you've considered. Also I'm presuming your children are of school age. Have you thought about informing the SENco at school, just to make them aware as additional reports may be useful to doc. Take care of yourself and keep talking!

[wibblywobbly]

Hi Daz, sorry to hear you are feeling so low and not getting the clinical support that you need; GPs generally have virtually no knowledge of ataxia in my experience - my dr thought i was going mad too; You really need a referal to a good neurologist as the first point of being diagnosed; Sounds like you need so professional emotional support too; Try to be forceful with your dr _ she can make all the notes that she wants but she obviously doesn;t understand your illness; If not do as someone else said and change dr;

Best of luck and we are all here for you if you need to communicate;