newly diagnosed but have suffered all my life

Replies to This Discussion

Permalink Reply by Kati on December 29, 2009 at 2:09pm

Hi and welcome to the group I don't have episodic ataxia but several of our members do, I'm sure someone will come along soon.

I'm sure I have seen it mentioned in blogs, if you type episodic ataxia in search box (at top right of site page) all posts and blogs mentioning it should come up along with people who posted. If you click on their name or pic it will take you to their page where you can send them a message too.

Hope you find the site useful.

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Permalink Reply by Jennifer Pitt on December 29, 2009 at 11:21pm

Hi Kati
Thanks for the reply. Everyone on this site seems so nice and helpful. I am so glad I found this website and will keep looking at the posts.
Thanks again.

Kati said:

Hi and welcome to the group I don't have episodic ataxia but several of our members do, I'm sure someone will come along soon.

I'm sure I have seen it mentioned in blogs, if you type episodic ataxia in search box (at top right of site page) all posts and blogs mentioning it should come up along with people who posted. If you click on their name or pic it will take you to their page where you can send them a message too.

Hope you find the site useful.

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Permalink Reply by Jennifer Pitt on December 29, 2009 at 11:27pm

That is interesting about your crooked neck. I guess mine could be caused by a neck problem. I have been having neck pain and stiffness where my hands go numb when I sleep. I started sleeping without a pillow because when I do sleep with one, I wake up with a sore neck. But I think my ataxia has gotten worse since I've been sleeping without the pillow. I was going to physical therapy because my hand/forearms were tingling. They did an MRI of my neck and said I didn't have very much space between some of my vertebrae in my neck. I never really thought about that causing my ataxia though??

I am interested in having the blood test done to see if I have the gene for it. Is that the test you are waiting on?

Thanks for writing me and giving me your story.

MG said:

Hello, My ataxia is somehow related to having a crooked neck. I read ataxia can cause a crooked neck but the crooked neck can also cause ataxia symptoms so until I get more testing I don't know what type of ataxia I have.

One theory I have is that in some cases maybe the person thinks they are in remission because the body will do it's best to form new nerve and muscle connections. The person leads a more active life thinking they are cured, but the connections are not as strong as the normal ones and perhaps over time those connections wear out or get exhausted.

I think a lot of rehab is about training muscles and nerves to performs tasks they were not meant to do or perhaps be used in ways that are not the best.

I have a crooked neck and poor posture. I am not able to sit the way they recommend to avoid typing related injuries. When I started trying to build up my typing speed, I thought I could work in data entry but then my hands started to go numb after a few weeks or so of timed writings and lots of practice. I get a laundry list of symptoms related to typing. I have to be careful not to type too fast, to pace myself, take lots of breaks and ration how much I type. If I type more than an hour at a time, the numbness starts to come back.

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Permalink Reply by Louise Davy on December 30, 2009 at 12:28am

Hi, Jennifer

I have EA2 and although I have been formally diagnosed, many never get a formal diagnosis!! There are a few of us on here and also on ataxiauk website.

I have tried a gluten free diet as there are gluten allergies in my family but it didn't do anything for me. I am on a low carb diet and I find that this helps mostly because I lost weight on it I think so I feel generally better. I had onset at 12 and diagnosis 2 years ago at the age of 37. I get few episodes now as i am on some 'magic' pills that work wonders for me but not for everyone - its called acetazolomide and I am on a high dose of it. I still get 'baseline' symptoms - poor balance, headaches, easy tripping etc but the actual episodes don't occur so much any more Partly because of the medication and partly because I can tell when an episode is going to occur and take steps to avoid it.

I have never heard of the EA disappearing and then returning - that would be wonderful. I did read one website that said that you can grow out of it - but I don't think anyone I know of has had that happen!!

If you have any other questions feel free to ask - you can e mail me privately or post on here - I haven't looked on here for a while because of the holidays!

Louise

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Permalink Reply by Mary Englund on December 30, 2009 at 12:30am

hi Jennifer, I have ataxia, not diagnosed as episodic, but I believe that is what I have. My symptoms occur every day, but in varying degrees throughout the day. Generally mornings are the worst. My suggestion is that you do find a good doctor to help with this. Because my symptoms occur every day, I was told I likely do not have MS (similar symptoms). I know someone with mild MS and she has the kind of experience you are describing, with long periods of no symptoms at all. Since MS is equally difficult to diagnose, it would be worth talking with a good neurologist, who is familiar with MS. My ataxia and other symptoms have hung around for 9 years, and I have no definitive diagnosis. I've been seen by many very good docs and stumped them all. It's a tough disease to diagnose if you don't have the genetic form of it. The gene tests are expensive, but worth it if you have insurance or can afford it. But you need a great doctor. One I do recommend is Dr. Perlman at UCLA if you can get in to see her. She's thorough, and a researcher. I also did the gluten diet and did improve. You have to be strict about it for at least 3-6 months to really test it. You can't "sometimes" eat gluten. You have to get it all out of your system, and it takes time. In 6 months I noticed improvement. But I was also taking thyroid medicine for the first time along with it. Your symptoms could be caused by a thyroid condition called, Hashimoto's. I have this, but we don't know for sure if this is what is causing my Ataxia. Ataxia from Hashimoto's is pretty rare, but does occur. Hope this helps.

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Permalink Reply by Craig Lisack on December 30, 2009 at 8:53am

Suggest you contact Sue at The National Ataxia Foundation. They are currently seeking volunteers for an interna tional Eposodic Ataxia study.

I too have been dx'd with a Sporadic Ataxia which my doctor, Dr Goldman of Rush University, Chicago suspects might be EA2.

Craig

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Permalink Reply by Jennifer Pitt on December 30, 2009 at 10:12am

Hi Louise,
Thanks for writing. How high of a dose of the med are you on? It is interesting that so many people's episodes started when they were 12. I really appreciate your input. It is just good to hear I am not alone. Someone MG on this forum said that hers was due to a crooked neck. I have been having a few neck problems lately and have gone to sleeping without a pillow. I don't know if my neck situation could have anything to do with it......But I definitely want to get the genetic test.

Thanks again. I may write again later.
Jennifer

Louise Davy said:

Hi, Jennifer

I have EA2 and although I have been formally diagnosed, many never get a formal diagnosis!! There are a few of us on here and also on ataxiauk website.

I have tried a gluten free diet as there are gluten allergies in my family but it didn't do anything for me. I am on a low carb diet and I find that this helps mostly because I lost weight on it I think so I feel generally better. I had onset at 12 and diagnosis 2 years ago at the age of 37. I get few episodes now as i am on some 'magic' pills that work wonders for me but not for everyone - its called acetazolomide and I am on a high dose of it. I still get 'baseline' symptoms - poor balance, headaches, easy tripping etc but the actual episodes don't occur so much any more Partly because of the medication and partly because I can tell when an episode is going to occur and take steps to avoid it.

I have never heard of the EA disappearing and then returning - that would be wonderful. I did read one website that said that you can grow out of it - but I don't think anyone I know of has had that happen!!

If you have any other questions feel free to ask - you can e mail me privately or post on here - I haven't looked on here for a while because of the holidays!

Louise

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Permalink Reply by Jennifer Pitt on December 30, 2009 at 10:14am

Hi Mary,
Thanks. I think I have had my thyroid checked lately...I'll double check what the results were.

Thanks for writing.
Jennifer

Mary Englund said:

hi Jennifer, I have ataxia, not diagnosed as episodic, but I believe that is what I have. My symptoms occur every day, but in varying degrees throughout the day. Generally mornings are the worst. My suggestion is that you do find a good doctor to help with this. Because my symptoms occur every day, I was told I likely do not have MS (similar symptoms). I know someone with mild MS and she has the kind of experience you are describing, with long periods of no symptoms at all. Since MS is equally difficult to diagnose, it would be worth talking with a good neurologist, who is familiar with MS. My ataxia and other symptoms have hung around for 9 years, and I have no definitive diagnosis. I've been seen by many very good docs and stumped them all. It's a tough disease to diagnose if you don't have the genetic form of it. The gene tests are expensive, but worth it if you have insurance or can afford it. But you need a great doctor. One I do recommend is Dr. Perlman at UCLA if you can get in to see her. She's thorough, and a researcher. I also did the gluten diet and did improve. You have to be strict about it for at least 3-6 months to really test it. You can't "sometimes" eat gluten. You have to get it all out of your system, and it takes time. In 6 months I noticed improvement. But I was also taking thyroid medicine for the first time along with it. Your symptoms could be caused by a thyroid condition called, Hashimoto's. I have this, but we don't know for sure if this is what is causing my Ataxia. Ataxia from Hashimoto's is pretty rare, but does occur. Hope this helps.

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Permalink Reply by Michael Geilen on December 30, 2009 at 10:16am

Hi Jennifer,
I also welcome you to the group. I have a vague diagnosis of Sporadic Ataxia. I believe it is similar to your Episodic Ataxia, but instead of a period a quiet I have experienced a plateau and the occational slight improvement. I have a speach slur, intermittant hand tremor, and balance problems. MG mentioned his crooked neck, and for me several of my vertebrae were damaged by a family member which I believe to be the cause of my Ataxia. I have been forced to pursue my own force of rehab: singing karoake to improve my slur, and cycling to improve my walking. During the summer of 09 I even cycled approx. 80 km during the BC Ride To Conquer Cancer.

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Permalink Reply by Jennifer Pitt on December 30, 2009 at 10:20am

Hi Colleen,
That is very interesting about the B12. My B12 levels were recently tested, and it was 444. It said the optimum levels are between 1000-2000, so my doctor put me on a liquid B vitamin. I think I had to be eating a normal diet (not gluten-free) when these blood tests were drawn also. So what you are saying makes sense, that since I'm not eating bread anymore my B vitamins are going to go way down. Like I said, the symptoms do seem to be getting worse. How did you get tested to know that it is B12 ataxia and not episodic? Did you get the genetic blood test done?

Thanks for the information,
Jennifer

Colleen Ann Gardiner said:

Hi Jennifer and welcome. Your story is very like mine but I do not have ep., ataxia I have b12 ataxia. This is from a lack of b12 in the diet. It should be controlable if treated correctly, although not always reversable, ask your Dr for a blood test. Removing gluten makes it worse because bread and cereals are fortified with b vitamins and so you are reducing the very thing you need.I am intolerante to wheat too. Surgery also often has a severe reaction due to a complication of the anesth., You are doing the right thing in questioning your condition and being proactive about your care. I have to run take care Colleen

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Permalink Reply by Jennifer Pitt on December 30, 2009 at 10:21am

Hi Craig,
I will look into that study. Thanks,
Jennifer

Craig Lisack said:

Suggest you contact Sue at The National Ataxia Foundation. They are currently seeking volunteers for an interna tional Eposodic Ataxia study.

I too have been dx'd with a Sporadic Ataxia which my doctor, Dr Goldman of Rush University, Chicago suspects might be EA2.

Craig

• ▶ Reply

Permalink Reply by Jennifer Pitt on December 30, 2009 at 10:25am

Hi Michael,
Thanks. How did you come to the conclusion that it is your damaged vertebrae that is the problem? I am wondering if it is my neck as well, however my episodes started when I was around 12, and it seems like a lot of the others on here also started around that time. I am going to start doing more neck stretches and exercises to stregthen my neck.
Thanks,
Jennifer

Michael Geilen said:

Hi Jennifer,
I also welcome you to the group. I have a vague diagnosis of Sporadic Ataxia. I believe it is similar to your Episodic Ataxia, but instead of a period a quiet I have experienced a plateau and the occational slight improvement. I have a speach slur, intermittant hand tremor, and balance problems. MG mentioned his crooked neck, and for me several of my vertebrae were damaged by a family member which I believe to be the cause of my Ataxia. I have been forced to pursue my own force of rehab: singing karoake to improve my slur, and cycling to improve my walking. During the summer of 09 I even cycled approx. 80 km during the BC Ride To Conquer Cancer.

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