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Treatments for Fahr's Syndrome

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Old 06-08-2012, 06:32 PM   #11
paulapepper
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Default I feel very bad for you and the one you love.

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Originally Posted by Starlight112611 View Post
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!
I have Fahr's too, but no pain and no seizures yet. There is nothing that western medicine offers. Maybe go to an acupuncturist???? paulapepper. I am 64.
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Old 06-30-2012, 12:01 PM   #12
paulapepper
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Red face fahr's

Quote:
Originally Posted by Starlight112611 View Post
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!
I have Fahrs disease and I have acupuncture. I don't know if it does any good but there is nothing else out there. Paula
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Old 09-01-2012, 03:28 PM   #13
paulapepper
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Default Where is the pain mostly?

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Originally Posted by Dr. Smith View Post
Here are some links to some organizations - some of which run clinical trials.
http://www.ninds.nih.gov/disorders/fahrs/fahrs.htm

Doc
Because I, too, have Fahr's but no pain. Paulapepper
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Old 10-06-2012, 11:26 AM   #14
paulapepper
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Frown Fahrs

Quote:
Originally Posted by Starlight112611 View Post
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!

I have Fahr's too, but not any pain, yet. Its a shame that there is no treatment or even any research! Paula, 64 diagnosed 08.
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Old 10-05-2013, 08:15 AM   #15
Rupstoh
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Default Help needed -Fahr's Syndrome

Hi,

First post here from the UK, London area.

My best friend Terry has been diagnosed within the last 6 days with Fahr's Syndrome and both myself and his family are looking for all the help we can get. He is 43, and started fitting/having seizures at night 10 days ago.

His worst episode was on Sunday 30th September 2013 when he had 3 seizures in a short space of time and was taken to hospital where a CT scan immediately showed calcium deposits on the top of the brain.

Medication to control the seizures has been prescribed and taken from Monday 1st October.

Can anyone help us as we are desperately worried?

Thanks

Ruppy.
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Old 10-05-2013, 09:34 AM   #16
Rupstoh
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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.
Hi Starlight, is this UK based?
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Old 12-09-2015, 02:34 PM   #17
Spiral
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Default Fahrs

My 48yr-old brother-in-law has this. Very Parkinson's like, with added mental mellowing. What are we to expect? What is the likelihood of his daughters getting this?
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Old 12-09-2015, 02:48 PM   #18
Lara
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Default

Hello Spiral,

Welcome to the NeuroTalk Support Groups.

I'm sorry that I can't help you with any information about Fahr's Syndrome, but I did just have a quick look for other posts by using the
Forum Search Feature

I looked for "posts" not "threads" and used Fahr's Syndrome as the keywords. Quite a number of old posts came up.

I hope you are able to find information and support here.

take care.
__________________

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Old 02-14-2018, 01:27 PM   #19
pamoolah
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Default Pamoolah

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.
I've been treated for physical problems ie, degenerated disc disease, spinal stenosis, osteoporosis; I have a spinal stimulator implant, and pain shots every 4 months, but have been diagnosed last year with Fahr's Disease! But I'm 74 years old,and am ambulent and I can still think! Stress can play a part, I've learned, but how can one control stress when thinking about this disease? I'm interested in the program you mentioned that has been reopened in studying Fahr's Disease...
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Old 04-11-2018, 12:39 PM   #20
pamoolah
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Default Fars Disease

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Originally Posted by paulapepper View Post
And can you live anywhere or do you have to go to their hospital?
Paula ( I have Fahrs,too )
Are they still seeking people at NIH for study? I've been recently diagnosed
with Far's D. and have not found recent e-mails...Anyone ?
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