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I finally have an acurate diagnosis to explain why I have poor tolerance of food, exhaustion, progressive weakness, nausea, pain, exercise and activity intolerance, brain fog, eye pain and dysfunction, and declining function.
I am an occupational therapist and a former physical therapist so I have been trying to use my knowledge and experience as a rehab professional to help myself, but none of the rules apply to me. I am getting worse very fast and I can hardly take care of family or myself as it is.
I would love to meet at least one other person in the world that has the same condition I do.
Do you or someone you know have experience using the Ketogenic Diet for improving energy with Tarui Disease?
I feel horrible after I eat anything, even fats and proteins.
Can you recommend a metobolic dietition?
Can you recomment a doctor or center who specializes with glycogen storage disease, esp Type VII?
Can you recommend any suggestions for severe eye pain/ headaches?
I live in Connecticut in Northeast USA but I am willing to travel anywhere in the world if I need to. (I'd love an excuse to go back to the UK!)
Thank you for any help you can offer. And if you are on this site it means you or a loved one suffers as well, and I am sorry.
Fondly, Otherwise Happy
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