SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
Good News, Out of Limbo Land, Hope for Others
About This Group:

This is a group for anyone who is currently living in limbo land with a neurological disorder but doesn't have a diagnosis. Many people are living with chronic and disabling neurological problems which mirror such diseases as multiple sclerosis, lupus, M.E., Fibromyalgia, Lymes disease, Vitimin D deficiency, Migraines, Parkinsons yet have no diagnosis and are left to literally struggle on alone. I have set up this group to help support people through their journey, whether its just for a moan, sharing a joke, experiences, advise on how to survive just plain anything. I know there are a lot of us out there. Anyone who feels lost, or needs to share or just wants a big hug please join, there will always be someone to give you support. OUR MOTTO IS: "we are still all in this together..no matter what point of our journey we are in...limbo, dx. or just joining...we are all here for a reason...to seek support, make a friend and find answers..."

Founded by MrsAristotle on October 2, 2009
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Good News, Out of Limbo Land, Hope for Others

I have found some success but since what I am speaking about is still an unidentified criteria I will post about it here rather than the neurology forum or any other public forum. I contacted one of the neurologists who was one of the original researchers into the criteria "tardive dysphrenia" and recieved return correspondence today. He will be speaking to my neurologist about the usage in myself (remember this is a literal clinical first, outside of that it has only been used in the animal model) of Vimpat for tardive dystonia and the clinically "unknown" criteria tardive dysphrenia. I am thankful for the people who worked with me, as well as anyone who gave me advice, information and support here and if anyone achieves a similar success story at any time you can post here as well. I can either by post or pm explaining how I achieved this and some of the ideas that I used. Best wishes to anyone who acheives any success of any kind. Hopefully other people will be able to be treated now as well. I will update people once the study is published and cleared for posting. Thanks.
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2 Comments
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1056589_tn?1273750702
Great News!!!!
I hope that it works out for you  and you find some peace.......
Please keep us posted...
Take Care , Theresa
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551343_tn?1350880995
What great news for 2010, I hope now you can move forward and get some peace.

Yes like Theresa said please keep us posted.

Hugs Mariaxx
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