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Introduction

SyntheticSonny Message
8 Jan 2013, 08:15 PM

Hello there, I see there are a few other members besides myself w/ this condition. I thought maybe we can introduce ourselves and say a little about how it affects you. My name is Sonny, I'm 30 yrs old and was diagnosed when I was 21 but started seeing a difference around 27... I am forgetful a lot, my short term memory is really bad that affects everyday living.
suemoo Message
2 Mar 2013, 06:22 PM

Hi Sonny, my mother was just diagnosed and I will be tested soon. I am in my 50\s and have suffered with leg tremors for about 15 years, they could not find the cause of my parkinsonism, but I do have severe osteoarthritis throughout my spine.. Fortunately I have not had any issues with my short term memory, my main issues are movement disorder and mobility issues. I do also suffer with mild OCD and my vitamin D levels are very low. I have read that these are also associated with Fahrs Syndrome. I cant wait to be tested! Finally after all these years, I might find out the source of my mobility problem. I am excited.
hometowndr Message
22 Mar 2013, 02:09 AM

Hi I'm 36 year old female, I have no symptoms of note. A week and half ago I was working in my storage room and was hit on my nose. So protocol is CT Scan of sinuses. After that the radiologist stated I need to have a full brain CT Scan. I did the results devastated me. It's dense and a lot of it. Looking back at family members I discover two of my three uncles passed with this then my dad as well. The good news I guess is my grandmother died at 77 with it, the uncles died between 55-65 years of age. I've not found any experts for this disease, which is discouraging.