If anyone has direct experience with Genetic Beriberi, I would love info. I know this disorder is extremely rare. I am trying to find another family who carries it. Thanks!

Hi JC. I wonder if you contacted more well-known clinics like the Mayo Clinic if they might be able to put you in touch with someone. Genetic beriberi does sound extremely rare and I hope you find someone you can share information with. Welcome to NeuroTalk!

I think you may have found another family with genetic beriberi--mine.
My toes started the pins-'n-needles thing, got worse...
results of tests: "peripheral neuropathy of moderate severity"
not MS (sister has); not ALS, ...
so I'm part of the 30% with idiopathic neuropathy
B6 level fine, B12 high, B1 not detectable!
Might explain my mother having increasingly weak legs--and me, too.
Father had an enlarged heart (another symptom)--and me, too.
Inherited from both??? or merely coincidence.
Father did have a severe tremor and, wow, do I have an intentional tremor--
but that's not part of not absorbing thiamine.
Anyway, if you want to talk..

welcome jcprov and cat921. i'm glad you found neurotalk and hopefully y'all will get a chance to chat.

How do you find out if it is genetic when all your family is passed away?
They cannot find a reason for me to have it, other than food sensitivities.
Curious,

Susan

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help.

There are great and caring fellow members here to assist you. Our shouders are here for support in many ways. My thoughts and prayers are with you.

Again welcome, looking forward to seeing you around.

Darlene

I believe that my brother and I and our cousin have genetic beri beri. After all of us have spent months and months with doctors looking at MS, tumors, neurotransmitter disease, etc., etc., there has been no diagnosis or help. I have now had two blood tests that show no B1 in my body. Still the doctors don't know exactly what to do with it. I am trying to find a doctor that is familiar with this condition and more equiped to help.

Can any of you point me in the right direction? We are all tired of feeling so bad and being made to think that we are crazy.

joe

Maybe this will help:

http://health.nytimes.com/health/gui.../overview.html

It might be that thiamine will have to be administered by IV injection (if oral does not work).

You can try the benfotiamine form, which is longer lasting in the body. Benfotiamine is not commonly found in stores...
But it is available online at many outlets. iherb.com is one example.

Have you and your family had any relief? Did you get B1 injections?


I too have low B1 levels and peripheral neuropathy symptoms (burning and piercing pains) for the last five months. Last month my blood B1 level was about 10% below the reference range which is not too unusual. However, at the time I was taking large amounts of benfotamine (500 mg) and regular B1 (~300mg). I would expect it should have been elevated or at least midrange.
I have been off of all supplements for three weeks an have just been retested but do not have the results yet. BTW, the symptoms have really gotten worse in the last week.

I wish you improved health.

Hello LexBrian and WELCOME to NeuroTalk!

I'm happy that you have found us and wanted to let you know that the thread you are replying to is a little old and that the poster (JosephCostello) has not logged in since his original post of April 23, 2011.
(you can see when a person last logged in by clicking on the person's name, then clicking on view public profile, it will show last activity date and time)

Here are a couple of links that may be able to help you and my be of interst to you.

Vitamins, Nutrients, Herbs and Supplements
http://neurotalk.psychcentral.com/forum49.html

Peripheral Neuropathy
http://neurotalk.psychcentral.com/forum20.html

Please feel free to roam around and join in anywhere!

If you have any questions or need any assistance please do not hesitate to ask. Someone will always be around shortly to help in any way that we are able.

I look forward to seeing you around the board.

Abbie