Author Topic: Hope4US  (Read 275 times)

[Buddie]

Hope4US
« on: February 01, 2022, 03:25:30 am »
I'm wondering if anyone has heard from Hope4Us since 2018?
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[Buddie]

Re: Hope4US
« Reply #1 on: February 01, 2022, 04:56:36 am »
No.  I did pm Jackie Brown who was on recently and who used to post on her blog alot and she said she hadn't heard from her either in years.  Hope4Us has such invaluable information on her blog with all the exhaustive testing she went through.  Docs found out why she had such bad symptoms.
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: Hope4US
« Reply #2 on: February 01, 2022, 05:48:49 pm »
No.  I did pm Jackie Brown who was on recently and who used to post on her blog a lot and she said she hadn't heard from her either in years.  Hope4Us has such invaluable information on her blog with all the exhaustive testing she went through.  Docs found out why she had such bad symptoms.

That's a shame. It looks like she stops coming on here years at a time. Hopefully, she is doing better?  I know she got diagnosed with gad65 encephalitis but how accurate do you think that was?  I feel like if that was the real problem then the IVIG treatments would have lessened her symptoms?  What symptoms, in particular, was she dealing with that are specific to gad65 encephalitis?

From the look of her posts, she was dealing with chronic akathisia symptoms. I have all those symptoms too.  Did she have problems before benzos? So many questions
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: Hope4US
« Reply #3 on: February 02, 2022, 12:45:45 am »
I have great faith in blood tests, since they don't lie.  I think her diagnosis was accurate.  It's interesting that I also was diagnosed with encephalitis last January, but mine is Lupus encephalitis.  I wish I had the money to have gotten all those antibody tests that she got, but they cost a fortune and most docs don't know to order them. 
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.