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Nice to meet you!!
Deb, :Wave-Hello: It is great to have youcome and be with us. There are a great number of dear friends to listen when you are in need of ears. Please let us know how we can help you out. You will find out we are supportive and relaxing place. Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you. :smileypray: Darlene :hug: |
Reply to Lara
Hi Lara,
Thanks for the welcome! I've been mis-diagnosed with MS for 30+ years. I changed to a new neuro about 3 years ago. He's the one who found the mis-diagnoses & that I have spino cerebella ataxia. I want to learn about what I have since knowledge is power. Are there any magazines or websites that do this? I mean ones that explain in plain English & not all those medical terms.I hope I get some answers from all those tests too. Deb |
Hi again Deb,
How are you doing? There is straightforward info on this first site I think. Second link is from same place but has downloadable Fact Sheets. Ataxia causes Ataxia resources and FAQs From the National Ataxia Foundation. http://www.ninds.nih.gov/disorders/ataxia/ataxia.htm NINDS Ataxias and Cerebellar or Spinocerebellar Degeneration Information Page Hard to find ones that are less "medical", Deb but there are some older posts here in the forums from people who have been diagnosed with spinocerebellar ataxia. If you use the search feature that I post below you can type in keywords and it will bring up those threads and posts. NeuroTalk Forum Search Feature You could start a new thread in either Movement Disorders Forum or in General Health Conditions and Rare Disorders Forum I would make the title "Spinocerebellar Ataxia" and that way if people are searching for this particular condition the thread will come up in the search more easily. Edited to ask: Do you by chance have celiac disease? Any family history of ataxia or have you had any genetic testing to determine a particular "Type" of spinocerebellar ataxia that you could have (as some are hereditary). take care there and sorry to be so long-winded. Lara |
Similar story
Quote:
I've never done drugs or abused alcohol but there are some striking similarities in your story. To be brief, I lost my mum after she essentially disowned me when she became an addict/alcoholic because she started self-medicating as they say. She was ill, had Lupus, and I was her caregiver until I was 20. I worked 2 jobs, went to Uni, and devoted my life to her. I took her everywhere she needed to go, assisted her at home, etc. I will never love anyone as much as my mother. She was the most amazing person I've ever met (and I don't use that word lightly like everyone else these days). Even though our relationship had many troubles, she loved me and she was my best friend for many years. Once she started stealing from me and inviting drug addicts over, I had to leave. After that, she called when she wanted money, would refuse to let me into her house, and even forgot how old I was and what I looked like eventually. I got a call at work 8 years later from my old job telling me to call a distant relative. I knew immediately what it would be. I rushed to the hospital (I lived in another city) and saw my mum that night, with foam coming out of her mouth and blue fingertips after she had been taken off life support. To this day I wish it had been me. To make matters worse, my job forced me to work the day of her funeral so I missed it and then her family stole her multi-million dollar estate from me, her only heir. They even took the photo albums. I was hit by a drunk driver just over a year later. Many people have said to me in the years since that they can't believe I made it through all of this without turning to drugs and alcohol (I literally have no support system as I am completely estranged from all family and my friends got tired of helping me out and hearing my excuses as to why I couldn't go out). It's just never been my thing but I can understand the allure of it when in the depths of pain and despair. I once had a gorgeous pinup/marilyn monroe body, never skinny but damn I looked good (I now realise). Inabilty to exercise has caused me to gain more weight than I could ever have imagined. I used to be pretty and talented, now I'm a horrific looking blob even though I'm vegan and only eat once every 48 hours. I hate that people think I stuff myself with cheeseburgers and milkshakes all day when I'm actually having hunger pains constantly. I'm from the States and have lived in England for over 2 years now and I'm sorry for being an internet weirdo and sending you a friend request but I am eager to meet others in the UK who can understand and relate to at least some of what I'm going through. I apologise for such a lengthy response, once I get started it's hard to stop. I wish you all the best and hope you find some comfort here. |
There is no need to apologise at all. This place is fantastic for people like us who have had a difficult time & are in need of support. Thank you for the friend request. Where are you based in England?
Any time you need to chat to someone, drop me a message :-) |
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