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Medications & Treatments For discussion about medications and treatments for any disease or health condition, including issues of medication toxicity. |
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01-11-2012, 04:06 AM | #1 | ||
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Someone I love very much was recently diagnosed with Fahr's Syndrome. I know that there is no cure for this and it can only be treated on a symptomatic basis. He sometimes has seizures or days where he is in quite a bit of pain. I was wondering if there was anyone here who knew of anything that I could do to help: any alternative therapies, any advice on how to handle seizures or their effects, any ways to be supportive. Any words of advice would be appreciated. Thank you!
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01-11-2012, 08:47 AM | #2 | |||
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Senior Member (**Dr Smith is named after a character from Lost in Space, not a medical doctor)
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Here are some links to some organizations - some of which run clinical trials.
http://www.ninds.nih.gov/disorders/fahrs/fahrs.htm Doc
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Dr. Zachary Smith Oh, the pain... THE PAIN... Dr. Smith is NOT a medical doctor. He was a character from LOST IN SPACE. All opinions expressed are my own. For medical advice/opinion, consult your doctor. |
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01-11-2012, 12:13 PM | #3 | ||
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Thank you. I'm just trying to find as much information as I can.
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01-11-2012, 02:20 PM | #4 | |||
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Senior Member (**Dr Smith is named after a character from Lost in Space, not a medical doctor)
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Quote:
That's what I get for posting with a level 8 migraine... xx xx Doc
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Dr. Zachary Smith Oh, the pain... THE PAIN... Dr. Smith is NOT a medical doctor. He was a character from LOST IN SPACE. All opinions expressed are my own. For medical advice/opinion, consult your doctor. |
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01-12-2012, 11:36 AM | #5 | ||
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Hi Starlight, It's not a treatment, but at NIH, the Rare and Undiagnosed Program is studying Fahr's, and they just reopened the program to new participants. My son involved in the program and they're looking for more people.
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01-12-2012, 11:50 AM | #6 | |||
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Wisest Elder Ever
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Here is a link to that NIH program:
http://rarediseases.info.nih.gov/Res...aspx?PageID=31 and http://rarediseases.info.nih.gov/GAR...ification.aspx
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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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01-22-2012, 05:19 PM | #7 | ||
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Quote:
Paula ( I have Fahrs,too ) |
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04-09-2012, 08:09 PM | #8 | ||
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Paula (and all),
Yes, you can live anywhere and be studied at NIH. E-mail Rena Godfrey at godfreyra at mail.nih.gov (replace "at" with @) -- she's a physician's assistant working in the Rare and Undiagnosed Diseases program. They are currently studying a group of about 14 patients and looking for more. Through them, I learned that there was a recent Chinese study that identified a gene for Fahr's, but none of the patients in the NIH group have the gene, so they are saying it's polygenic (more than one gene can cause it) in nature. Symptoms vary considerably by individual, so the (rather scary) information on the Internet may or may not be applicable to you. Please do contact them. The more people they have, the more they (and we) will learn. Treatment is free. A-mom |
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05-27-2012, 11:33 AM | #9 | ||
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Dear Liz,
I think that's your name. I don't want to loose the page and start looking. I was diagnosed in08. I was seeing a speech therapist on my own, and she said that I had had a stroke. So, I knew that I hadn't but I got my gp to give me a script, and were we both surprised. It mentioned Fahr's as a possibility and I got my diagnosis.Then I went back to the same neurologist that could not diagnose me by just my speech, and with the MRI she was able to diagnose Fahr's. That was in 08. Nobody else in the family had it (my parents are both deceased) but my paternal grandfather had undiagnosed Parkinson's. He died at 79, upright but w/dementia. I sure hope that I don't get the mental part of Fahr's. As of now I have no mental symptoms, only balance issues and walking uphill. Going down i'm fine but I am slow going up. I am64. What symptoms does your daughter have. You can reach me directly at stanandpaulaatcomcast.net. Just substitute the written "at" for the @ sign. |
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"Thanks for this!" says: | CinGen33 (11-16-2019) |
05-27-2012, 11:35 AM | #10 | ||
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Junior Member
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And, I wrote to freyra at NIH. We'll see what happens
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