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Guillain-Barre and Adult ADEM

Posted by robnhtown @robnhtown, Jul 10, 2020

Good evening all,
I am 59 year old healthy as a horse former collegiate athlete, and I was stricken in March of this year with GBS (Guillan Barre) and Adult ADEM (Acute disseminated encephalomyelitis) , requiring being placed on a vent, getting steroid, IVIG and plasma pharesys treatments.
20 days in hospital, 11 in rehab, now after almost 4 months getting better daily....my question is does anyone have any earthly idea of how many folks obtain both these maladies at once?
And any idea of what to be aware of?, avoid? The path forward? I've reached out to the GBS Society, Rare Disease Org, ADEM Support groups and i keep getting the same answer....getting just one of these is pretty rare, no one has numbers on folks getting both.
Anybody???

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Mentor
John, Volunteer Mentor | @johnbishop | Jul 10, 2020

Hello @robnhtown, Welcome to Connect. You mention that your current treatment over the past 4 months has you getting better daily. That's really good news. I'm not sure there is anyone that will be able to answer your question although I would guess you are not alone. Most of us who have done research here on Connect have been able to take solace that we are not alone and can learn from each other.

There is an older discussion - GBS (Guillain-Barre Syndrome): https://connect.mayoclinic.org/discussion/gbs-guillian-barre-syndrome/, where you can read what other members have shared.

I did find an older research article from 2010 using Google Scholar (https://scholar.google.com) that you may find interesting.
[Association between acute disseminated encephalomyelitis and Guillain-Barré syndrome in an adult].:
-- https://europepmc.org/article/med/21745776

Have you been able to discuss your thoughts with your doctors?

REPLY
1 reply
robnhtown | @robnhtown | Jul 10, 2020

Hi John,
Thanks for the kind welcome, its great to be able to at least say something about what you have going on. I was kinda in the same mindset, i dont think im going to get the answer i'm looking for and i'm ok with that. I just want find out as much as i can (i'm just naturally curious anyway). I've not spoken to my Dr's regarding %'s of folks that may share the 2 illnesses, my Dr's were a little more focused on getting me well which i certainly appreciate, Mentally and spiritually i'm in a really good place (I am a Sr Pastor in Houston) so i'm very grateful to be alive and on the road back to pre-GBS & ADEM, strong, supportive family and network of co-workers and believers.
My clergy friends call me Miracle Man, I'm ok with that too I was in pretty bad shape there for a while, but God is most kind and I am extremely happy to be healing and alive to tell my story!
I really appreciate you reaching out!
Thanks & blessings to you and yours
Robert

REPLY
Ellen | @helenfrances | Jul 10, 2020

Robert,
You are blessed with a strong support system and He does heal us!
Prayers for your complete healing. I ask that in His name.

REPLY
Ellen | @helenfrances | Jul 10, 2020
In reply to @johnbishop "Hello @robnhtown, Welcome to Connect. You mention that your current treatment over the past 4 months..." + (show)
@johnbishop

Hello @robnhtown, Welcome to Connect. You mention that your current treatment over the past 4 months has you getting better daily. That's really good news. I'm not sure there is anyone that will be able to answer your question although I would guess you are not alone. Most of us who have done research here on Connect have been able to take solace that we are not alone and can learn from each other.

There is an older discussion - GBS (Guillain-Barre Syndrome): https://connect.mayoclinic.org/discussion/gbs-guillian-barre-syndrome/, where you can read what other members have shared.

I did find an older research article from 2010 using Google Scholar (https://scholar.google.com) that you may find interesting.
[Association between acute disseminated encephalomyelitis and Guillain-Barré syndrome in an adult].:
-- https://europepmc.org/article/med/21745776

Have you been able to discuss your thoughts with your doctors?

Jump to this post

I was not familiar with this syndrome. Thank you for thie information.

Life long learner!
Ellen

REPLY
robnhtown | @robnhtown | Jul 10, 2020

Hi Helen,
Neither was I (LOL) They said i was being attacked from the head down and from the feet upwards! I lost about 10 days where I have no earthly idea of what was happening, so I've learned quite a bit in a short time frame..still lots to learn!
Thanks for reaching out!
PS - He's the ultimate healer!
Blessings
Robert

REPLY
1 reply
Ellen | @helenfrances | Jul 11, 2020
In reply to @robnhtown "Hi Helen, Neither was I (LOL) They said i was being attacked from the head down..." + (show)
@robnhtown

Hi Helen,
Neither was I (LOL) They said i was being attacked from the head down and from the feet upwards! I lost about 10 days where I have no earthly idea of what was happening, so I've learned quite a bit in a short time frame..still lots to learn!
Thanks for reaching out!
PS - He's the ultimate healer!
Blessings
Robert

Jump to this post

For Robert:
“Trust in the Lord with all your heart, and lean not on your own understanding; in all your ways acknowledge Him, and He shall direct your paths.”
Proverbs 3:5-6
Helen

REPLY
Ellen | @helenfrances | Jul 11, 2020

John mentioned that Mayo treats GBS!
Are you near them?
I just read about Mayo’s information on this website.
You may want to visit the Mayo website.

REPLY
robnhtown | @robnhtown | Jul 12, 2020

Hi Ellen,

No I am actually in Houston, Texas. I was treated at Houston Methodist and received outstanding care and treatment, i'm really grateful to live in Houston with our world class medical center. My treatments are done and i am on the recovery road!
Thanks

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