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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.
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[f3...]

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

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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. 
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  • 1 year later...
On 01/02/2022 at 20:45, [[B...] said:

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. 

Hello Becksblue,

I'm late to this post as I've been away from this board for years.

I am over 8 years off Klon now but still totally disabled so I am going to try the blood testing route to attempt to figure out what's wrong with me (cytokine, inflammation markers.

 

I'm wondering what type of doctor diagnosed your encephalitis? I am in the beginning stages of trying to find help myself (internationally, if need be), and I'm trying to find a place to start. If I had to say what my symptoms feel like, I'd say encephalitis because my brain is always on fire.

Did you ever get the GAD65 test that Hope4Us tested positive with? It's a test I want to get done as it shows in a lot of autoimmune disorders like Stiff Person Syndrome.

Hope you are doing well

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  • 4 weeks later...
On 18/01/2024 at 15:23, [[[...] said:

Hello Becksblue,

I'm late to this post as I've been away from this board for years.

I am over 8 years off Klon now but still totally disabled so I am going to try the blood testing route to attempt to figure out what's wrong with me (cytokine, inflammation markers.

I'm wondering what type of doctor diagnosed your encephalitis? I am in the beginning stages of trying to find help myself (internationally, if need be), and I'm trying to find a place to start. If I had to say what my symptoms feel like, I'd say encephalitis because my brain is always on fire.

Did you ever get the GAD65 test that Hope4Us tested positive with? It's a test I want to get done as it shows in a lot of autoimmune disorders like Stiff Person Syndrome.

Hope you are doing well

Immunotherapy in PV Mexico is great! For antibody test many people are going with the full celltrend panel. It’s shipped to Germany :)

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