hi, i have ataxia and on a weekly basis my walking capabilities are getting worse.
i am waiting for a nuerological report but this is taking some time.
i have been diagnosed with progressive cerebellum ataxia , does anyelse have this and what does the future hold , as i cannot get many answer from my nhs people
I am on the same boat... The walking is getting worse. I wish I coulod help you. Doctors take a long time to get to the matter. Well, keep in touch and share experiences.
Hi Paul,Yes I have Cerebellum ataxia.I was told the damage is already done.And to enjoy life while you can. Also said use it or loose it.But keep in mind, these are our bodies.We know more about our illness then any Dr. That is so true.As long as we all eat healthy and excerise and strenghen our cores, we'll never progress to far.I also found a better Lisa then I ever thought possible.Just last Dec. I got engaged.This illness will never take me down. NEVER! :) Also I eat organic foods.And it does make me feel better.
Paul, I read your profile. Your in the UK? Have they tried Diamox on you? or the generic would be acetazolamide. This helped me tremendously with my ataxia. I have ataxia, secondary to a chiari acquired from Ehlers Danlos. My ataxia was so bad, I had to hold onto walls to walk. 4 years undiagnosed. I visited Johns Hopkins University Hospital in Baltimore, Maryland. They have an Ataxia Clinic there. I was seen by Dr. David Zee, a leading doctor in the USA for ataxia. You may want to read up on some of his articles and discussions, and see if he has a professional relationship with another doctor in the UK, that they can recommend. Remember to live life everyday to the fullest, and do not feel sorry for yourself. My illness has bought me many friends, and the understanding of others, that have to cope with disabilities (i.e. cerebral palsy). I have 90% of my balance back, can look at lights, and swim 3-4 times per week, to keep my core muscles moving. I am also learning a new language to help stimulate my brain...keep learning new things, this will help with your brain. God Speed. Karen
I have SCA2, an inherited ataxia. I have had it for about 15 years. Each year presents new challanges as progressive means it progresses each year with no known cure right now. I think each type, and there are many for how rare it is, presents their own characteristics. My brother and my dad had it and they showed a few different things than I do. I am still trying to wrap my brain around all of this!
i have
but just take each day as it comes. some are good and some are bad, but just take rough with smooth. what i find hard is not working because i have always worked sine leaving uni
but hey ho
try not to look for things happening, done that
stress makes us worse
Paul,
I was diagnosed with SCA a few years ago by a neurologist here in Ottawa. My balance has gotten worse over time, but not too rapidly. My speech as well. My neuro told me that right now there is no cure, but try to keep doing what you are doing! While I don't think it totally stops the progression of the disease, I think it slows it down. I try to stay active, but scale things back somewhat. I have days or times when I want to give up, but then I just keep going trying not to let this thing beat me.
I don't know what the doctors in the UK are like, but I know here ataxia is a bit of an unknown for some - it's important to do your research, especially if you aren't happy with what the doctor says!
Remember, you have people on here that will help and support and know what you are going through!
My Brother has ataxia and has had it now for 15 years. His started with slurred speech and walking with a cane. We had ALL kinds of testing done because we had no idea what was wrong with him. He got the "cerebellar ataxia" general diagnosis with NO KNOWN CAUSE. How frustrating is that? We cannot find anyone that can tell us WHY he has this horrible disease. He is now fully disabled and in a wheelchair. If ANYONE has any advice or knows of any help we can get to try and STOP his progression THAT is what we are hoping for. We recently had an intestinal biopsy to see if he had Whipples disease or Celiacs disease and the biopsy came back negative for both. He is healthy as a horst ACCEPT for his brain - the cerebellum. It is continuing to decrease in size and we cannot do a dang thing about it. I have never been so frustrated. I help my Brother alot and just want to be able to find something to fix this.....help if you have ANY info, please!
My ataxia was classified originally as unknown origin..until the dots were connected together. We had double jointed/hyper mobile limbs, dislocations,chronic sprains, autism and spinal issus (degenerative disc etc) which pointed towards a connective tissue disorder. Then my sister had herself and children diagnosed clinically by a geneticist, for Ehlers Danlos Syndrome, type III. The syndrome is systemic and can affect multiple organs at once. 10% of EDS III people develop chiari's which can cause the ataxia, which is in my case. The problem that the doctors run into, is that the chiari (the herniation of the cerebellum) doesn't appear significant, unless you have an upright (cine) MRI. The upright will show the true problems on the cerebellum. Many neurosurgeons/neurologist have not been schooled on this. Geneticist, Dr. Clair Francomano (graduate of Yale) and Dr. Fraser Henderson (neurosurgeon) are probably the leading authority on this. If you have double jointed limbs in your family, or stretchy skin, you may want to investigate this.
Karen Dixon said:
Paul, I read your profile. Your in the UK? Have they tried Diamox on you? or the generic would be acetazolamide. This helped me tremendously with my ataxia. I have ataxia, secondary to a chiari acquired from Ehlers Danlos. My ataxia was so bad, I had to hold onto walls to walk. 4 years undiagnosed. I visited Johns Hopkins University Hospital in Baltimore, Maryland. They have an Ataxia Clinic there. I was seen by Dr. David Zee, a leading doctor in the USA for ataxia. You may want to read up on some of his articles and discussions, and see if he has a professional relationship with another doctor in the UK, that they can recommend. Remember to live life everyday to the fullest, and do not feel sorry for yourself. My illness has bought me many friends, and the understanding of others, that have to cope with disabilities (i.e. cerebral palsy). I have 90% of my balance back, can look at lights, and swim 3-4 times per week, to keep my core muscles moving. I am also learning a new language to help stimulate my brain...keep learning new things, this will help with your brain. God Speed. Karen
paul said:
hi thanks for your input, makes interesting reading, and yes i am based in the uk, i will do some research on this dctor and the Diamox, and will bring this up with my neurologist, atthe moment i am waiting on my blood results to determine what type i have so far its taken 6 weeks, i was told it could be a lack of vitamin e , but not in my case as i pre emptied this by taking supplements and my condition is slowly getting worse,i have had quit a bit of feedback from other memebers
so all in all this does make me feel good , that you are not isolated
again many thanks to you for responding, and i will keep on adding posts to this website when i get more results.
i know one thing for sure i will betrying every/anything to sudue or cure this disease.
my motto I NEVER LOSE!!!
best regards
paul
Karen Dixon said:Paul, I read your profile. Your in the UK? Have they tried Diamox on you? or the generic would be acetazolamide. This helped me tremendously with my ataxia. I have ataxia, secondary to a chiari acquired from Ehlers Danlos. My ataxia was so bad, I had to hold onto walls to walk. 4 years undiagnosed. I visited Johns Hopkins University Hospital in Baltimore, Maryland. They have an Ataxia Clinic there. I was seen by Dr. David Zee, a leading doctor in the USA for ataxia. You may want to read up on some of his articles and discussions, and see if he has a professional relationship with another doctor in the UK, that they can recommend. Remember to live life everyday to the fullest, and do not feel sorry for yourself. My illness has bought me many friends, and the understanding of others, that have to cope with disabilities (i.e. cerebral palsy). I have 90% of my balance back, can look at lights, and swim 3-4 times per week, to keep my core muscles moving. I am also learning a new language to help stimulate my brain...keep learning new things, this will help with your brain. God Speed. Karen
Thanks, Karen! I don't believe we have either of those issues but I will definitely check into it. Does anyone else in your family have ataxia?
Karen Dixon said:
My ataxia was classified originally as unknown origin..until the dots were connected together. We had double jointed/hyper mobile limbs, dislocations,chronic sprains, autism and spinal issus (degenerative disc etc) which pointed towards a connective tissue disorder. Then my sister had herself and children diagnosed clinically by a geneticist, for Ehlers Danlos Syndrome, type III. The syndrome is systemic and can affect multiple organs at once. 10% of EDS III people develop chiari's which can cause the ataxia, which is in my case. The problem that the doctors run into, is that the chiari (the herniation of the cerebellum) doesn't appear significant, unless you have an upright (cine) MRI. The upright will show the true problems on the cerebellum. Many neurosurgeons/neurologist have not been schooled on this. Geneticist, Dr. Clair Francomano (graduate of Yale) and Dr. Fraser Henderson (neurosurgeon) are probably the leading authority on this. If you have double jointed limbs in your family, or stretchy skin, you may want to investigate this.
No, but 4 out of 5 siblings have the Ehlers Danlos Type III, and one other sibling has a Chiari Malformation like me, my sister. We also have issues with IBS and fainting/syncope which is POTS syndrome. Only 10% of Ehlers Danlos III people go on to have a chiari...and then everyone with the chiari, doesn't necessarily have ataxia. Ataxia is a symptom, secondary to the EDS and chiari. (I have probably confused you). My sister and I have had attacks similar to those of a TIA or mini-stroke where the speech goes slurred and legs cramp. I had an attack last month, and my speech was slurred for a week. I am currently being interviewed to be seen at the Chiari Institute in New York City. This has been a long road traveled, and I feel like I've earned my medical doctorate along the way...but bottom line is never give in never give up..and keep looking forward. It is an unexpected journey in life, that has peeks and valleys...a true adventure.
Hi Paul.
I also live in the UK and was diagnosed with progressive CA six years ago. Despite MANY tests and well over 30 blood tests they still dont know the strain or where it came from!
There is no known cure (dont waste your money on Stem Cell therapy (I have looked into it, and the results I got were that its still in its infancy yet), and I have the same non defeatist attitude you have. I go to Tai Chi once a week (for my balance) and attend the gym twice a week (to keep strehgth in my muscles - I cant control them, so I may as well develop them!)
As a result, I was told I would be in a wheel chair by the time I was 50 (I am now 44). I still walk unaided (albeit shaky at times), so half way through the timescale given to me by the doctors, but I am determined not to let it get the better of me
I eat fresh food and I avoid alcohol, fizzy drinks and fast food wherever possible.
These tips are not much help I know, but its the best I have found as no one could explain to me what was best to do - so I did all these by myself!
Exercise, exercise, exercise (safely of course). Keep your muscles strong and your core strong. I have sporadic cerebellar ataxia (non-hereditary/unknown cause) but am going thru some genetic testing at this time to be sure. I've had ataxia for 8 years now and use a cane when I leave home. It affects my balance/dexterity, speech and swallowing. I've taken some bad falls and that's not fun...ha! Anyway, I find exercise helps so I do floor exercises and balance exercises (I hold onto the counter). I bought a book online called "The Balance Manuel" which is very helpful! I'm going to try yoga/pilates as I've heard/read it's good for strength and balance. Even walking with a cane or trekking poles is good exercise if you can, Best of luck with your research and keep positive, even though ataxia is challenging....
I use our Wii Fit game counsel for exercise so I don't have to go out to do balance exercises...I only use the gym for swimming. The balance programs on the Wii are good practice.
I’m getting a mobility chair thru Medicare
Paul~
I have had Ataxia for almost 30 years, anyway, that is when I first started noticing symptoms. I though it was just the pregnancy at that time that was affecting me , but as the years went on, the symptoms got worse. I asked my family doctor to find out what was wrong with me. He thought I was nuts!! This was the mid 90's by then and although I was seen by a neurologist and an ENT and a Speech Pathologist, nothing was conclusive as to a diagnosis or a prognosis!! (I think they just didn't KNOW anything then) The neurologist just told me flatly that is was ATAXIA....and "in my head" and to get over it! I was told.nothing more! It has only been though this website (the internet) and talking to people who are suffering like me that I have found out more about this disease! I am now in the process of getting my new doctor to DO something about it...so I can have a REAL diagnosis and not not be put in a general Ataxia category! I do not know for sure WHAT kind of Ataxia I have, or even why? But I am going to find out!!! In the meantime...I try to eat healthy ( I am also Type 1 diabetic) exercise to increase core strength and get enough sleep and try to relieve stress! I know that sounds like a lot to do and worry about ...but you will feel a bit better if you can do those things. I hope you get your results quickly and that you can start to find a routine and a system that will work for you. One thing I have noticed....everyone does not have the same symptoms...we all have similarities, but each person has their own special problems dealing with ATAXIA!!! I for one will not give up until I have the answers I need, and I choose to try and not dwell on all that I cannot do!! I concentrate on what I STILL can do..that helps! Good Luck!
Lori
Well I guess I am having a pitty party. Sorry everyone.
Lori