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General Health Conditions & Rare Disorders Discussions about general health conditions and undiagnosed conditions, including any disorders that may not be separately listed below. |
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09-02-2008, 11:32 PM | #21 | ||
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It's Sept 2nd and my brother is about to leave for China on the 8th of Sept, he has been counting the days. He is in bad shape, cannot walk and his speech is very bad, slurring more than ever. He got to meet a 21 year old girl here in Kansas City over the weekend. She was in worse condition than my brother, went to China and had the Stem Cell Injections done. She is now out of her wheel Chair and is doing unbelievable better. She is now driving and works like everyone else. She is a Prime Example of not giving up or giving in to the people who told her that she was waisting her time going to China, but she proved them wrong. The cost is over 40k, but it is worth saving a life for that amount. We had fund raisers and we collected over 20k, I pitched in the balance of 25k and have no ill feelings about my choice, he is my brother and if there is a chance i will do what ever it takes. I hope anyone with this disease looks into this type of treatment. I know Stem Cell is a bad subject in the USA, but we will not give in to the doctors that told him to go home and die. My brother was told my the Mayo Clinic that has Genetic Ataxia, but I believe it was caused by paint thinner from being a auto painter all his life, back then the protection from breathing the fumes was not good. Paint thinner can be one of the causes of this disease, but what do I know? I told my brother he had Ataxia from the beginning, but his wife and son told me I was wrong and all the doctors said he was mental. It took going to the Mayo Clinic and thousands of dollars to tell him what I already knew from my research. Please say a pray for my brother John , and God Bless all of you.
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09-02-2008, 11:37 PM | #22 | ||
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Quote:
It's Sept 2nd and my brother is about to leave for China on the 8th of Sept, he has been counting the days. He is in bad shape, cannot walk and his speech is very bad, slurring more than ever. He got to meet a 21 year old girl here in Kansas City over the weekend. She was in worse condition than my brother, went to China and had the Stem Cell Injections done. She is now out of her wheel Chair and is doing unbelievable better. She is now driving and works like everyone else. She is a Prime Example of not giving up or giving in to the people who told her that she was waisting her time going to China, but she proved them wrong. The cost is over 40k, but it is worth saving a life for that amount. We had fund raisers and we collected over 20k, I pitched in the balance of 25k and have no ill feelings about my choice, he is my brother and if there is a chance i will do what ever it takes. I hope anyone with this disease looks into this type of treatment. I know Stem Cell is a bad subject in the USA, but we will not give in to the doctors that told him to go home and die. My brother was told my the Mayo Clinic that has Genetic Ataxia, but I believe it was caused by paint thinner from being a auto painter all his life, back then the protection from breathing the fumes was not good. Paint thinner can be one of the causes of this disease, but what do I know? I told my brother he had Ataxia from the beginning, but his wife and son told me I was wrong and all the doctors said he was mental. It took going to the Mayo Clinic and thousands of dollars to tell him what I already knew from my research. Please say a pray for my brother John , and God Bless all of you. |
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09-27-2008, 07:44 PM | #23 | ||
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Dear Rhartn,
Hello, and apologies for not responding sooner. I haven't checked in for quite awhile, but I was very excited to see that this thread got some more recent posts. Anyway, to answer your question re: my statement about testing -- "commercially available types of autosomal dominants," here is what I meant: You see, since our family's faulty gene has never been identified in the past, my neurologists have been pretty much playing the game of elimination. And even though there are currently 31 types of hereditary Ataxias which have been identified, only about 1/3 of the types are commercially testable (through Athena Diagnostics in MA and a few more, overseas in Germany). Re: the autosomal dominant part, the fact that ours affects every generation (whereas autosomal recessive skips a generation) has narrowed the field down somewhat for us, fortunately. A variant of "unknown clinical significance" was identified on the KCNC3 gene when I tested for SCA-13. However, when I spoke with a neurogeneticist about this last month, she feels that it may or may not mean something for me/us, who knows? And so the next step, if I want to continue my pursuit, is to test additional affected family members -- and if they have the same variant, then...just maybe... Take care and here's to continued slow progression, Chris Last edited by color; 09-27-2008 at 07:56 PM. Reason: additional info |
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09-27-2008, 08:08 PM | #24 | ||
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Dear kcagent007,
Please keep us posted on your brother's visit and treatment. You are a wonderful sibling to have helped so! Blessings, Color Last edited by color; 09-28-2008 at 12:56 PM. Reason: wordsmithing |
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08-28-2009, 10:34 AM | #25 | ||
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08-29-2009, 08:12 AM | #26 | |||
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Wisest Elder Ever
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In this study, suggested doses were really high 600mg 4 times a day. http://clinicaltrials.gov/ct2/show/NCT00957216 This study showed both low dose and high dose worked: Quote:
The Tishcon company is often used by doctors and this place sells it. Its higher quality means you don't need gram range dosing but it is more pricey than others. I'd start at the 60mg twice a day and increase if needed over time. http://www.epic4health.com/noname.html There are other makers, one is Doctor's Best... but it has Bioperine added to increase absorption. Bioperine may interfere with drug therapies if your father takes prescription drugs. So I would not use this type at this time. Non Tischon CoQ-10 will need high doses, at least 300mg once or twice a day to start, and see if you need to move higher, say every 2wks-4wks. Increase slowly and give it time to work. This may save you money. CoQ-10 is not a toxic substance, so only your pocket book is a factor for most people. This monograph may be helpful: http://lpi.oregonstate.edu/infocenter/othernuts/coq10/ Quote:
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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02-03-2010, 07:02 AM | #27 | ||
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Hi, My name is Werner and i live in South Africa. I'm sorry to hear about your brother. My Daughter 10 years old has been diagnosed with Ataxia. But the question I have is... did the stem cell injections work? i'll do anything for my daughter as it is prognosed that she has one of the fatal ataxia's and that the prospect doesn't look good. Thank you for taking the time. Best Regards Werner |
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02-03-2010, 07:11 AM | #28 | |||
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Hello Werner, and welcome to NeuroTalk.
I'm not sure if you noticed that this is an old thread but considering it was commenced back in 2007, it's possible the person you've addressed your reply to, make not see it. Hopefully others will be able to assist you if that's the case.
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09-12-2011, 12:09 PM | #29 | ||
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If you are still out there, I would like to know how your brother is doing and what happened.
Thanks, Alex |
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09-12-2011, 12:23 PM | #30 | ||
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I am a new member to this forum and I have started to read different stories that has given me courage to keep moving forward and be strong. I am a 57yr old male with c. ataxia.
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