[random_emotion]

Hello,

I have been diagnosed with a very rare disorder about six months ago even though I have had it my whole life I don't know anyone with this disorder and most doctors have never heard of it why do things always have to be so complicated its called a.r.s.a.c.s (autosomal recessive spastic ataxia of charlevoux-saguenay) its under the muscular dystrophy umbrella I am not sure why I am telling you this I just want to go to the doctor and not be told there is nothing else to be done I just want a different life

[CANDC]

Hi sorry you are suffering with your diagnosis. I do not have experience with that but here are a couple articles from the archive.
Psych Central - Search results for Autosomal recessive spastic ataxia of charlevoux-saguenay

Thinking of you. *hugs*

[gayleggg]

I wish there was something that they could do for you. It must be awful to be told that there is nothing else can be done. Sending prayers your way.

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[Pierro]

I am sorry broken_one. I don't know what to say. Thinking of you

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[Walking Man]

I understand what you are saying. I have epilepsy that is not totally controlled on meds, and an inoperable benign brain tumor. I was diagnosed when I was 12, and I'm now 41. There's not much they can do besides try different meds. It can be very frustrating just having to get on with things. Nobody understands what my struggles are and I'm stuck with them.

I like going to the doctor because I feel like I'm doing something about it (even if nothing changes). I like learning about my condition, and have learned a lot though forums. I also try to do what I can about my day to day life. You may find out about things that help that your doctor won't tell you, like diet, sleep, exercise, etc.