Ataxia UK
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Hi my names tracy,42 years old just been diagnosed with ataxia,awaiting official letter to find out type but have been prescribed acetazolomide slow release to help with symptoms. Anyone else been on this medication?im feeling very anxious at the moment as I don't really have a lot of information about ataxia.i have been signed off work for 5 months now and had to stop driving.i am hoping this medication helps when my surgery finally get it in stock!!

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Hi Tracy, welcome🙂 My Neurologist prescribed Acetazolamide for me, she thought it might help with BPPV (dizziness turning over in bed). It has helped somewhat but I get most benefit from remembering not to lie on my right side😏 But, it is also prescribed for other symptoms. It didn't make me drowsy exactly, more apathetic. One of my symptoms is peripheral neuropathy (pins and needles) in my hands and feet, Acetazolamide increased the sensation to a point where it was almost unbearable. For this reason, I've reduced the tablet from 2, to 1 daily.

Definitely read up about ataxia in general before your next Neuro appointment🙂 ataxia.org.uk and ataxia.org

The second site is the National Ataxia Foundation in the US, you may find additional useful information on there🙂xBeryl

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Hello.😊thanks for the reply.im having terrible trouble with balance and coordination hence the reason I have stopped driving.as a passenger in a car I feel as though I'm drunk and that my eyes just can't keep up with passing objects. I have been warned of the side effects of the tablets but I'm willing to give them a go .😳

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😏It must horrendous. I empathise, I've also had long standing eye problems. Try the medication, not everyone has side effects🙂xB

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What type of ataxia do you have wobblybee?i should have asked my neurologist questions really but to be honest I probably would have forgotten what he said by the time I got home!

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😏 Current thinking is it's related to a Recessive gene. There is Atrophy on the MRI, and I do experience recognised ataxia symptoms but a recent blood test showed another condition could be contributing to the mix. I expect to be given more information in January, always a waiting game😉 It's very common to seem to be struck dumb at a Neurologist appointment😏 Beforehand, lots of questions spring to mind but once you're face to face 🤔 And, it's not easy taking information in at an appointment. Sometimes medical jargon can throw you, and there's the added stress of unfamiliar surroundings etc... never mind there may have been difficulties getting there in the first place. If there's ever something you don't understand, try and remember to ask for a simple explanation🙂 It may take a while before you notice any improvement with the medication, fingers crossed😉xBeryl

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Oh gosh.why such a long wait for answers??do health professionals not realise that this causes patients to worry and frett.!!i have just been diagnosed and I I think waiting 2 weeks for a letter to be sent to my doctors bad enough.i have got all sorts going on in my mind and I'm a stress head anyway!

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Hi Tracy hopefully the info beryl sent you was helpful and kept your mind busy. I would write your questions down for next time you see your Neurologist. Re the stressing I know it's really difficult but try to not constantly fret about it as that really will make your condition worse. Trying to come to terms with ataxia isn't easy. We are still waiting for diagnosis of type a year later still no answers but we are learning to accept that and try and find out as much info as we can and change what we can like stress and diet and accepting the rest that we can't change. Hope you are doing ok. Use the forum to connect and talk about it but remember the more you stress the worse your symptoms can be. Maybe ask your GP for some CBT counselling to help you manage the stress. All the best Lisa

oh by the way not me but husband who has ataxia type unknown.

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Was diagnosed March 2016 and saw neurologist again last month and told no medication available to help with shakes and had first cataract eye op yesterday so apologies if any spelling mistakes. Still managing to walk but very unsteady and try to shop at supermarkets where I can use a teolley for support. Don't go into town alone now need hubbys arm to suppot me

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It really sounds awful for you suzieg56 . I hope you feel better soon after your eye op.i have only recently been diagnosed and 4 weeks ago I saw neurologist who took blood and when I rang for results they said they aren't back yet! I am amazed how long things take.i have just started taking acetazolamide so it's early days yet.do they have the electric wheelchair trolleys in any supermarkets near you? Might be helpful to you. Best wishes 😊

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sounds like me! Have you tried the breathing exercise, when you get the shakes, I am putting the shakes down to anxiety, so I breathe through my nose deeply and exhale through my mouth and I am sure it helps.

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Hi Susie, how are you now? I to hang on to my husband or anyone else! I am trawling the net to see if there is any medication available, and will let you know, am in doubt I ahve ataxia even though I have been told by my neurologist I have, am going to sheffield in a couple of weeks, could my smyptons be anxiety? I often get told to calm down and relax, easier said than done! Hope you are still getting out. x

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Hello to All - I have to be honest to you all. I have done so many Dr. and therapy visits it has been exhausting. After reading many stories it just makes me so upset. I was finally diagnose with Cerebelum hereditary Ataxia at the age of 58 and now here I am at the age of 66 and things have worsened, Yes hereditary. 1 year later, my sister of 2 years behind me also showed the signs. Then behind her our brother two years behind her then showed signs also. Let me just say we were all up in the air once they were then diagnosed.

I asked both did the Doctor give any hope for the disease and of course they both said they were told they have no cure and meds that would help them. The disease is progressive and nothing will help.They asked whatI thought and I said we had 3 doctors diagnose us with the same exact answer.

So I said this. I'm done now after hearing the same results 3 times I told them it is what it is and nothing will cure us. From here on I refuse to give up and it is what it is. I planto go on and live day by da and when things happen we will figure it out when the time comes.

We agreed no more doctors to give false hope with meds that will never work and nomore test that will do nothing. I go once year just to let the doctor see where I am as far as my Ataxia. I told him absolutely n o testing only blood testing and my routine yearly check up.

I guess from here that ends mystory and guess what? I love not having many doctor visits that won't do anything for me. Unless of course you love all the attention of always having people feel bad cause nothing ever gets solved. Or some people waste moneygoing to line the doctors pockets. Do as you feel of course. But I only wanted to say as of today I feel good no going to doctors who may give false hope or meds that are worthless.

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Hey Stanleyclan Truly nice to hear you feel the same way. My doctor asked if I wanted to come see him four times a year. I looked at him and asked him if he felt out of those 4 times would he do some things to help cure the problem? He said no that he could not give me promises. So I told him once a year for a check up is fine. I must say.... it is great to hear your husband stays positive and keeps going. I always felt the same . Just keep in mind it does not go away. I always feel so fortunate because I was 58 when this started and all my Grandkids were in their early teens. I got to enjoy their earlier years doing many things with them. At least am feeling like they enjoyed me through the younger years.

To your husband keep positive mind and you know what? Just keep having a fun life and give things a chance. Best of luck to all.

vickie

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My husband very much shares your attitude. 4 years ago he had every test going...mri....lumbar....bloods....no diagnosis...no cure...genetic tests took two years to come back...no answers....so he goes to no appointments now. Why go to have what will happen and your expected proggression drummed in to you....have you thought about beakers with spouts...non slip trays....changing your job.....my husband was 36 when this started. Through shear pig headed stubborness he still works full time...helps at my sons football training....runs....in fact he has carried on as normally as he can. His balance is getting worse....we both know that...he stumbles and has fallen a few times now but he gets up and carries on. He takes a cocktail of suppliments that sunvox (Joe-my hero 😉) has shared research about on here and i am trying to get him to physio. One day we made need to seek some medical assistance with his symptoms but for now Ataxia is an unwelcome guest in our lives that we ignore as much as we can! X x x x

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Hi Nancy I would like to let you in on something. Don't let doctors fill you with different medications and claim that they work. I have had Cerebelum Ataxia for about 8 years and never have I read about medications to help. Pease really read up on what people say of this disease.

My Ataxia is hereditary which now my sister and my only brother also have it. I tell you this to make you realize this is uncureable and will not go away. Don't let Doctors make you believe that med will make you better. They may work for some on some cases but ill never make it go away.

If I am wrong please anyone let me know. I have had three different doctors give it to me straight. No beating around a bush. I am giving it to you straight,

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