New to all this

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

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!

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.

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

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.

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

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,