Medications & Treatments For discussion about medications and treatments for any disease or health condition, including issues of medication toxicity.

Reply
 
Thread Tools Display Modes
Old 01-11-2012, 04:06 AM #1
Starlight112611 Starlight112611 is offline
New Member
 
Join Date: Jan 2012
Posts: 3
8 yr Member
Starlight112611 Starlight112611 is offline
New Member
 
Join Date: Jan 2012
Posts: 3
8 yr Member
Question Treatments for Fahr's Syndrome

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!
Starlight112611 is offline   Reply With QuoteReply With Quote
Old 01-11-2012, 08:47 AM #2
Dr. Smith's Avatar
Dr. Smith Dr. Smith is offline
Senior Member (**Dr Smith is named after a character from Lost in Space, not a medical doctor)
 
Join Date: Oct 2010
Location: Lost in Space
Posts: 3,515
8 yr Member
Dr. Smith Dr. Smith is offline
Senior Member (**Dr Smith is named after a character from Lost in Space, not a medical doctor)
Dr. Smith's Avatar
 
Join Date: Oct 2010
Location: Lost in Space
Posts: 3,515
8 yr Member
Default

Quote:
Originally Posted by Starlight112611 View Post
Any words of advice would be appreciated.
Here are some links to some organizations - some of which run clinical trials.
http://www.ninds.nih.gov/disorders/fahrs/fahrs.htm

Doc
__________________
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.
Dr. Smith is offline   Reply With QuoteReply With Quote
Old 01-11-2012, 12:13 PM #3
Starlight112611 Starlight112611 is offline
New Member
 
Join Date: Jan 2012
Posts: 3
8 yr Member
Starlight112611 Starlight112611 is offline
New Member
 
Join Date: Jan 2012
Posts: 3
8 yr Member
Default

Thank you. I'm just trying to find as much information as I can.
Starlight112611 is offline   Reply With QuoteReply With Quote
Old 01-11-2012, 02:20 PM #4
Dr. Smith's Avatar
Dr. Smith Dr. Smith is offline
Senior Member (**Dr Smith is named after a character from Lost in Space, not a medical doctor)
 
Join Date: Oct 2010
Location: Lost in Space
Posts: 3,515
8 yr Member
Dr. Smith Dr. Smith is offline
Senior Member (**Dr Smith is named after a character from Lost in Space, not a medical doctor)
Dr. Smith's Avatar
 
Join Date: Oct 2010
Location: Lost in Space
Posts: 3,515
8 yr Member
Default

Quote:
....some links to some organizations - some of which....
I can't believe I actually wrote/posted that.
That's what I get for posting with a level 8 migraine... xx xx

Doc
__________________
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.
Dr. Smith is offline   Reply With QuoteReply With Quote
Old 01-12-2012, 11:36 AM #5
a-mom a-mom is offline
Junior Member
 
Join Date: Jan 2012
Posts: 7
8 yr Member
a-mom a-mom is offline
Junior Member
 
Join Date: Jan 2012
Posts: 7
8 yr Member
Default Fahr's study

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.
a-mom is offline   Reply With QuoteReply With Quote
Old 01-12-2012, 11:50 AM #6
mrsD's Avatar
mrsD mrsD is offline
Wisest Elder Ever
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
10 yr Member
mrsD mrsD is offline
Wisest Elder Ever
mrsD's Avatar
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
10 yr Member
Lightbulb

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
__________________
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.
mrsD is offline   Reply With QuoteReply With Quote
Old 01-22-2012, 05:19 PM #7
paulapepper paulapepper is offline
Junior Member
 
Join Date: Jun 2010
Posts: 30
8 yr Member
paulapepper paulapepper is offline
Junior Member
 
Join Date: Jun 2010
Posts: 30
8 yr Member
Default treatment for Fahrs???

Quote:
Originally Posted by a-mom View Post
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.
And can you live anywhere or do you have to go to their hospital?
Paula ( I have Fahrs,too )
paulapepper is offline   Reply With QuoteReply With Quote
Old 04-09-2012, 08:09 PM #8
a-mom a-mom is offline
Junior Member
 
Join Date: Jan 2012
Posts: 7
8 yr Member
a-mom a-mom is offline
Junior Member
 
Join Date: Jan 2012
Posts: 7
8 yr Member
Default Fahr's being studied at NIH

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
a-mom is offline   Reply With QuoteReply With Quote
Old 05-27-2012, 11:33 AM #9
paulapepper paulapepper is offline
Junior Member
 
Join Date: Jun 2010
Posts: 30
8 yr Member
paulapepper paulapepper is offline
Junior Member
 
Join Date: Jun 2010
Posts: 30
8 yr Member
Default Fahr's

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.
paulapepper is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
CinGen33 (11-16-2019)
Old 05-27-2012, 11:35 AM #10
paulapepper paulapepper is offline
Junior Member
 
Join Date: Jun 2010
Posts: 30
8 yr Member
paulapepper paulapepper is offline
Junior Member
 
Join Date: Jun 2010
Posts: 30
8 yr Member
Default Fahr's

And, I wrote to freyra at NIH. We'll see what happens
paulapepper is offline   Reply With QuoteReply With Quote
Reply

Tags
fahr's, syndrome, treatments

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Fahr's Disease hopeful General Health Conditions & Rare Disorders 19 03-14-2019 11:45 PM
Fahr's syndrome paula_w Parkinson's Disease 1 06-09-2012 01:27 PM
Sicca Syndrome/Sjogrens Syndrome darlindeb25 Autoimmune Diseases 4 04-01-2010 06:53 AM


All times are GMT -5. The time now is 04:07 PM.

Powered by vBulletin • Copyright ©2000 - 2020, Jelsoft Enterprises Ltd.
Search Engine Optimisation provided by DragonByte SEO v2.0.31 (Lite) - vBulletin Mods & Addons Copyright © 2020 DragonByte Technologies Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2020 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is 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.