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!

Here are some links to some organizations - some of which run clinical trials.
http://www.ninds.nih.gov/disorders/fahrs/fahrs.htm

Doc

Thank you. I'm just trying to find as much information as I can.

I can't believe I actually wrote/posted that. :eek:
That's what I get for posting with a level 8 migraine... :Bang-Head: xx :vomit: xx :Sigh:

Doc

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.

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

treatment for Fahrs???
 

And can you live anywhere or do you have to go to their hospital?
Paula ( I have Fahrs,too )

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

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.

Fahr's
 

And, I wrote to freyra at NIH. We'll see what happens

I feel very bad for you and the one you love.
 

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.

fahr's
 

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

Where is the pain mostly?
 

Because I, too, have Fahr's but no pain. Paulapepper:hug:

Fahrs
 

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.

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.

Hi Starlight, is this UK based?

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?

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.

Pamoolah
 

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...

Fars Disease
 

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 ?

Potential Fahrs treatment
 

Pamoohlah-
There is an article that refers to 7 cases of treatment using biphosphonate alendronate. This might be worth mentioning to your neurologist . This medicine may be able to provide respite for current sufferers and potentially delay onset in others tested as high risk. **************. More trials are neded though.