paced2live27 - I'm sorry to hear that you've had these complications that have affected your ability to get the type of care and support you need. I'm guessing this has been a long haul and you're pretty frustrated. I would still encourage you to not give up. FAS is a very rare disorder and it's typically difficult for patients with rare disorders to get the type of attention they need in a cookie-cutter medicine with short appointments world. Having two languages involved isn't an issue. Getting the right specialist is. Please do not take these words as criticism, what I'm saying is that while it is hard to do this, if you can muster up your courage and pull together your medical history and test data and so forth in a very precise, factual manner and get to a specialist who has the training and interest in treating you it could make a world of difference. If there is a local stroke or brain injury association they make be able to help you in researching specialists in your area. You may have to go outside of your local area. It takes extra work when you have a rare condition.
Two years is a long time to have had to deal with this, try to get help, not get help, and be told that you have "anxiety." You deserve better and a good life. I hope you will go after it!
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paced2live27 - I'm sorry to hear that you've had these complications that have affected your ability to get the type of care and support you need. I'm guessing this has been a long haul and you're pretty frustrated. I would still encourage you to not give up. FAS is a very rare disorder and it's typically difficult for patients with rare disorders to get the type of attention they need in a cookie-cutter medicine with short appointments world. Having two languages involved isn't an issue. Getting the right specialist is. Please do not take these words as criticism, what I'm saying is that while it is hard to do this, if you can muster up your courage and pull together your medical history and test data and so forth in a very precise, factual manner and get to a specialist who has the training and interest in treating you it could make a world of difference. If there is a local stroke or brain injury association they make be able to help you in researching specialists in your area. You may have to go outside of your local area. It takes extra work when you have a rare condition.
Two years is a long time to have had to deal with this, try to get help, not get help, and be told that you have "anxiety." You deserve better and a good life. I hope you will go after it!
All the best, Pat
May 14, 2010 - 4:19pmThis Comment
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