newly diagnosed but have suffered all my life

Replies to This Discussion

Permalink Reply by Jennifer Pitt on December 30, 2009 at 10:52am

Thanks again for all the info. I haven't set up the genetics tests yet. I just started looking into it but I heard UCLA docs are reall good. Is vit B one that you can get too much of? Maybe I will increase my dosage.

Hope you get to feeling better as well.
Thanks,
Jennifer

Colleen Ann Gardiner said:

My Mri scans showed damage mainly to to the spinal cord as well as the cerebellum and my b12 was low so they put me on injections for a little while to see if things improved which they did but not completly. Anyway things were managable and then I had spinal surgery in jan this year. I woke up feeling 30years older and I continued to deteriorate, they have now decided that I again became b12 deff., as NO2 anesth., oxidates b12 and the body can not use it so my levels are unreliable.It seems there are 2 ways of testing b12 the standard one is used in the UK test where all b12 present in the blood is counted but on the continent they use a test which seeks out the active b12 and that apparently is where the problem lies as only active b12 can be used by the body.Sorry to sound so long winded about it. I had been told many different things over the last 12 months MS, Ataxia, both hereditary and non H, crazy and very disheartening but apparently quite the norm, my consultant now says there is no need to do further tests as he is convinced that it is b12 ataxia. I so hope that he is right as it can be controlled and from what I have researched may even improve. Still I would be glad to stay put for a while in the walking and dizzy stakes.When are they going to do your genetic tests? Opps I have to run again take care Colleen

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Permalink Reply by Jennifer Pitt on December 30, 2009 at 4:19pm

Hi Colleen,
I'm not quite sure what you mean by a "fizzing" feeling?? Sometimes before I get dizzy or ataxic, my legs or ankles tingle. I can tell it is coming on then. And then I will get the uncoordinated episode where I can't walk, slur my speech, etc. I get so nauseated sometimes, I end up throwing up, and have to go to bed to sleep it off. I am taking the sublingual b vitamins once a day, but I think I will try increasing it to twice a day to see if that makes any differnce.
Thanks again,
Jennifer

Colleen Ann Gardiner said:

Hi again, sorry I keep running off, hubby's just come in and is watching the little one whilst I grab a chance to reply. You can not overdose on b12 so it is very safe. The best one to take is a sublingual (drops under the tounge) as it is absorbed better. you also need to take a standard vitamin b complex with it as without it the body has difficulty absorbing the b12 as they work together, Do you get a sort of fizzing feeling at all? Ataxia is so different for everyone but b12 has some very obvious symptoms that are not so usual in most ataxia.

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Permalink Reply by Jennifer Pitt on December 30, 2009 at 10:51pm

Thank you for all the info and for the sites you sent my way. I will definitely check them out. And I am going to increase my b vitamins just in case that may be the proble.
Thanks for your help
Jennifer

MG said:

I guess I am one of those people who may never know for sure what type of ataxia I have even if I did get tested. I don't know much about ataxia testing. I think the testing is expensive and I don't have a way to pay for it. I don't seem to be getting worse so I guess it would not make much of a difference.

I think a person should get a doctor's permision before excercising the neck. You may have muscle imbalances which you might irritate by excercising and the symptoms may seem to have nothing to do with your neck. Massage therapy of some kind done by a massage therapist might be the safest way to go. I don't know how to find a good one. Maybe your doctor can refer you to a good one.

I have been to chiropractors and had some massage therapy and adjustments there but that was more than 25 years ago so I don't remember much about it. I thought they were helping me at the time, but some people seem to think chiropractors make things worse.

I haven't read about all the neck muscles.

The neck is a complex structure that includes 7 small vertebrae, intervertebral discs to absorb shock, joints, the spinal cord, 8 nerve roots, vascular elements, 32 muscles, and ligaments. source of info for this paragraph: http://www.spineuniverse.com/displayarticle.php/article1442.html

Doctors often blame neck problems on emotions. It is much easier than trying to figure out which part of the neck is having problems.

I have read some about the Sternocleidomastoid(SCM), that is the neck muscle that I have had problems with all my life. For some reason a large portion of that muscle turned into scar tissue. It's a long story. When I was 12 they had to cut through the muscle to improve my range of motion.

When the SCM is strained or shortened the muscle itself rarely hurts, no matter how stiff or tight it may be. Problems are referred elsewhere, to head and neck, ears, eyes, nose and throat. The astonishing laundry-list of pain and dysfunction includes severe dizziness and other neurological symptoms. These may be mistakenly diagnosed as migraine, sinus headache, atypical facial neuralgia, trigeminal neuralgia, arthritis of the sternoclavicular joint, ataxia, multiple sclerosis (MS), brain lesions, tumors, and other frightening conditions. source of info for this paragraph: http://www.round-earth.com/SCM.html

I have tried many different changes to my diet to improve my symptoms. I seem to need to adjust what I eat from time to time. Any change to the diet, no matter how well it is recommended, can make things worse. As one person indicated, getting rid of gluten foods without replacing the b vitamins can be a problem.

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Permalink Reply by Dawn Wooldridge on January 2, 2010 at 4:28pm

Hiya,

Do I assume you are in America,

Welcome to the forum, I'm sure you will find it helpful.

I am Dawn 44, from Essex, UK. I have had symptoms since infancy, which has had many diagnosis over the years, when I was in my late twenties I was diagnosed with Hemiplegic Migraine & in my thirties I was told I also had Episodic Ataxia type 2.

I was symptom free from around the age of 16 - 17 but then symptoms returned again at the age of 23 during a problamatic pregnancy with my second child....

As with many ataxias, symptoms can vary & affect people on an individual basis, so it is important to be seen regually by a good Neuro.
I urge you to seek a correct diagnosis by a good neuologist, although I personally don't know of any in you area...

However There is a facebook page titled "Episodic Ataxia Support Group" where we have members worldwide, All members either have EA themselves or are a friend / relative of someone with it. Which you might find useful.

You might also like to contact the National Ataxia Foundation who are based in the USA, www.ataxia.org who might be able to offer more localised support to you.

Feel free to get back in touch with me if I can help in any way...

Good luck & Best wishes

Dawn x

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Permalink Reply by Jennifer Pitt on January 2, 2010 at 6:45pm

Hi Dawn,
Yes, I am from the States. That is interesting your were symptom-free for a few years, as I was as well from 30-35. And then after my hysterectomy all my symptoms came back. From what I've read and heard from people on this forum, it is very unusual for the symptoms to dissapate at all.

I will check out the facebook page. Thanks for letting me know about that.
Jennifer

Dawn Wooldridge said:

Hiya,

Do I assume you are in America,

Welcome to the forum, I'm sure you will find it helpful.

I am Dawn 44, from Essex, UK. I have had symptoms since infancy, which has had many diagnosis over the years, when I was in my late twenties I was diagnosed with Hemiplegic Migraine & in my thirties I was told I also had Episodic Ataxia type 2.

I was symptom free from around the age of 16 - 17 but then symptoms returned again at the age of 23 during a problamatic pregnancy with my second child....

As with many ataxias, symptoms can vary & affect people on an individual basis, so it is important to be seen regually by a good Neuro.
I urge you to seek a correct diagnosis by a good neuologist, although I personally don't know of any in you area...

However There is a facebook page titled "Episodic Ataxia Support Group" where we have members worldwide, All members either have EA themselves or are a friend / relative of someone with it. Which you might find useful.

You might also like to contact the National Ataxia Foundation who are based in the USA, www.ataxia.org who might be able to offer more localised support to you.

Feel free to get back in touch with me if I can help in any way...

Good luck & Best wishes

Dawn x

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Permalink Reply by M.G.Rosales on January 3, 2010 at 6:14pm

hello . i think if you have suspected ea you need a dietician advise before going on any diet ,as episodies are induce by physical stress too on the body illnesses,virus,tiredness,overdoing it ,poor sleep and lack of nutrients too because badly done diets o poor eating ,anything that can cause poor health in general cause stress in the body system and will bring more episodies in ion channel disoders so the cause could well be that if the diet is not done by a dietician .
good luck with the doctors

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Permalink Reply by Jennifer Pitt on January 4, 2010 at 8:58am

Hi Colleen,

I have been reading up more on b 12 deficient ataxia. I really hope that is the one I have as like you said, it is treatable. Do you remember what your level was when they said it was too low. Mine was 444 pg/mL.....do you think that is low enough to cause my problems? I read that the best protocol is to have an injection once a day every day for a week and then every week and then eventually every month. Is that what you said you did?

Can you describe your symptoms and what happens when you have an attack? I want to see if it is close to mine. When did yours start? Sorry I have so many questions, but I am getting excited (hopeful) that maybe, just maybe, I've found the answer. If you prefer, you can e-mail me directly at jpitt@pixius.net

Thanks in advance for your help.
Jennifer

Jennifer Pitt said:

Hi Colleen,
I'm not quite sure what you mean by a "fizzing" feeling?? Sometimes before I get dizzy or ataxic, my legs or ankles tingle. I can tell it is coming on then. And then I will get the uncoordinated episode where I can't walk, slur my speech, etc. I get so nauseated sometimes, I end up throwing up, and have to go to bed to sleep it off. I am taking the sublingual b vitamins once a day, but I think I will try increasing it to twice a day to see if that makes any differnce.
Thanks again,
Jennifer

Colleen Ann Gardiner said:

Hi again, sorry I keep running off, hubby's just come in and is watching the little one whilst I grab a chance to reply. You can not overdose on b12 so it is very safe. The best one to take is a sublingual (drops under the tounge) as it is absorbed better. you also need to take a standard vitamin b complex with it as without it the body has difficulty absorbing the b12 as they work together, Do you get a sort of fizzing feeling at all? Ataxia is so different for everyone but b12 has some very obvious symptoms that are not so usual in most ataxia.

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Permalink Reply by Sarah M. Bosse on May 7, 2010 at 9:31am

I have gluten ataxia. Started gluten free diet 10 months ago. This has helped the constant GI problems and made the pain all over my body less and totally improved my health. But being that I was undiagnosed celiac all my life, there's a lot of damage done now. Since going gluten free, I've found that when I do get contaminated the least bit, it sends me (literally) to the emergency room and I'm sick for about 3 months with part of that time being bedridden. The ataxia starts about 5-6 weeks after the contamination. My celiac symptoms exploded after I went gluten free and then got contaminated. Felt like I was literally going to die, and at that point I really didn't care anymore if I did because I was so sick. If it is truly gluten ataxia and celiac disease or gluten intolerance, "just a little bit" of gluten can do some very very bad things to your body, brain, spinal cord, and peripheral nerves. I use a wheelchair. I have peripheral neuropathy in my legs. The damage stacks up over time. Some of it may improve, and some of it won't. I've been reading a lot of research journals and would be glad to share those with you.

Sarah

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Permalink Reply by Michael on May 15, 2010 at 5:26pm

Hi!

Welcome aboard. :)

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