Autoimmune Diseases For Hashimoto’s thyroiditis (underactive thyroid), Graves’ disease (overactive thyroid), Lupus, Crohn's disease, all types of arthritis, and all other autoimmune diseases. [Multiple sclerosis (MS) and Myasthenia Gravis (MG) have their own forums below.]


advertisement
Reply
 
Thread Tools Display Modes
Old 02-03-2012, 12:04 AM #1
vasilea vasilea is offline
New Member
 
Join Date: Feb 2012
Posts: 3
10 yr Member
vasilea vasilea is offline
New Member
 
Join Date: Feb 2012
Posts: 3
10 yr Member
Default hashimotos encephalopathy

I've just been diagnosed with a rare autoimmune disorder called hashimotos encephalopathy. It means the thyroid antibodies a0lso attack the brain. Started immunosuppressant ssteroid, prednisone tappered down. Next is plasmapheresis. Does anyone have knowledge of my diagnosis or of plasmapheresis?
vasilea is offline   Reply With QuoteReply With Quote

advertisement
Old 02-03-2012, 12:22 AM #2
mrsD's Avatar
mrsD mrsD is offline
Wisest Elder Ever
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
mrsD mrsD is offline
Wisest Elder Ever
mrsD's Avatar
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
Lightbulb

Some of the posters at the myasthenia gravis forum get plasmapheresis...

You might post there for answers to this procedure.

http://neurotalk.psychcentral.com/forum77.html

Type the term into the search engine on the first page there
in the upper right, and all posts will show where you can look around. It is always useful to search, because the board here
has been around for years now, and some posters move on.
Their posts however may still be useful to you.
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei

************************************

.
Weezie looking at petunias 8.25.2017


****************************
These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
mrsD is offline   Reply With QuoteReply With Quote
Old 04-23-2012, 10:03 PM #3
gabriela gabriela is offline
New Member
 
Join Date: Apr 2012
Posts: 1
10 yr Member
gabriela gabriela is offline
New Member
 
Join Date: Apr 2012
Posts: 1
10 yr Member
Default Hashimoto tyroidithis

I am trying to find a doctor with knowledge of this disease.
Could you, please give me the name and a contact number of the doctor?
gabriela is offline   Reply With QuoteReply With Quote
Old 04-25-2012, 09:30 PM #4
jettwalker jettwalker is offline
New Member
 
Join Date: Apr 2012
Posts: 1
10 yr Member
jettwalker jettwalker is offline
New Member
 
Join Date: Apr 2012
Posts: 1
10 yr Member
Default Hashimoto Encephalopathy

Diagnosed Aug 2010. Receiving treatment at Houston Medical Center.
8-9 years of sluething to determine. Receiving corticosteroid infusion treatment once a month. It has been very effective for me. Tried oral corticosteroids, without success. Can discuss physician via private email.
jettwalker is offline   Reply With QuoteReply With Quote
Old 06-08-2012, 09:25 AM #5
puma48 puma48 is offline
New Member
 
Join Date: Jun 2012
Posts: 2
10 yr Member
puma48 puma48 is offline
New Member
 
Join Date: Jun 2012
Posts: 2
10 yr Member
Default

Quote:
Originally Posted by vasilea View Post
I've just been diagnosed with a rare autoimmune disorder called hashimotos encephalopathy. It means the thyroid antibodies a0lso attack the brain. Started immunosuppressant ssteroid, prednisone tappered down. Next is plasmapheresis. Does anyone have knowledge of my diagnosis or of plasmapheresis?
It is very scary for me. It is frequently underdiagnosed or misdiagnosed. I have stroke like symptoms along with a host of other symptoms. My Neurologist first said that it was a mental issue, and told me that I needed to see a Psychiatrist. I took memory tests and failed miserably. It has been a very stressful time. I have not had any treatments for this yet.
puma48 is offline   Reply With QuoteReply With Quote
Old 06-19-2012, 01:29 PM #6
joojee22 joojee22 is offline
Junior Member
 
Join Date: Dec 2011
Posts: 97
10 yr Member
joojee22 joojee22 is offline
Junior Member
 
Join Date: Dec 2011
Posts: 97
10 yr Member
Default sarry

Dr. Noel R. Rose, Director Autoimmune Disease Research Center, Johns Hopkins Medical Institutions
See if you can email him, he has had very serious problems himself. (from the book Autoimmune Epidemic)

Hope you get to feeling better

j.
joojee22 is offline   Reply With QuoteReply With Quote
Old 07-18-2012, 08:37 PM #7
fari fari is offline
New Member
 
Join Date: Jul 2012
Posts: 2
10 yr Member
fari fari is offline
New Member
 
Join Date: Jul 2012
Posts: 2
10 yr Member
Default Where did you get diagnosed?

Quote:
Originally Posted by vasilea View Post
I've just been diagnosed with a rare autoimmune disorder called hashimotos encephalopathy. It means the thyroid antibodies a0lso attack the brain. Started immunosuppressant ssteroid, prednisone tappered down. Next is plasmapheresis. Does anyone have knowledge of my diagnosis or of plasmapheresis?
Hi, Just would like to know where you went to get diagnosed?
Thanks,
Fari
fari is offline   Reply With QuoteReply With Quote
Old 07-18-2012, 08:44 PM #8
fari fari is offline
New Member
 
Join Date: Jul 2012
Posts: 2
10 yr Member
fari fari is offline
New Member
 
Join Date: Jul 2012
Posts: 2
10 yr Member
Default your doctor?

Quote:
Originally Posted by jettwalker View Post
Diagnosed Aug 2010. Receiving treatment at Houston Medical Center.
8-9 years of sluething to determine. Receiving corticosteroid infusion treatment once a month. It has been very effective for me. Tried oral corticosteroids, without success. Can discuss physician via private email.
Hi, I would like to know the name and place of the doctor who diagnosed you.
It has been years of suffering for me as well.
Fari
PS, The site does not allow me to send my email to you. See if you can get the name to me.
God bless
Fari
fari is offline   Reply With QuoteReply With Quote
Old 10-15-2012, 02:40 PM #9
hesilverlining hesilverlining is offline
New Member
 
Join Date: Oct 2012
Location: midwest (US)
Posts: 2
10 yr Member
hesilverlining hesilverlining is offline
New Member
 
Join Date: Oct 2012
Location: midwest (US)
Posts: 2
10 yr Member
Default Descriptions of HE treatments

Quote:
Originally Posted by vasilea View Post
I've just been diagnosed with a rare autoimmune disorder called hashimotos encephalopathy. It means the thyroid antibodies a0lso attack the brain. Started immunosuppressant ssteroid, prednisone tappered down. Next is plasmapheresis. Does anyone have knowledge of my diagnosis or of plasmapheresis?
*edit*

They are trying a lot of different kinds of treatment for HE these days. In addition to steroids, there are various steroid-sparing medications they can use to help avoid the side-effects of steroids. But you usually need to get brought back to somewhere near base line through initial aggressive treatment of either IV steroids, or plasmapheresis.

Best of luck.

Last edited by Chemar; 10-15-2012 at 02:56 PM. Reason: NeuroTalk guidelines
hesilverlining is offline   Reply With QuoteReply With Quote
Old 12-19-2012, 11:06 PM #10
superwed superwed is offline
New Member
 
Join Date: Dec 2012
Posts: 1
10 yr Member
superwed superwed is offline
New Member
 
Join Date: Dec 2012
Posts: 1
10 yr Member
Default Hashimotos Encephalopathy

Hello,
Saw your post (forwarded below) offering to provide he name of the doctor treating your HE. My mother has elevated anti tpo antibodies and neuro-cognitive symptoms consistent with HE. Doctor is attempting to treat it, but would like to consult with another doctor who is more experienced with HE. Would you provide me the name and contact info for your doctor so we may see if he is willing to consult via phone or email with our doctor to answer a few questions? Would be deeply appreciated.

Also, when you say you tried oral corticosteroids without success, which one were you on specifically? What dosage and for how long. Did you have *any* response at all to the oral, or none at all? Asking because my mom initially appeared to improve in the first week on 80 mg oral prednisone, then she backtracked to where she was before even though dosage was not lowered and we've had not further improvement (its now the 3rd week). Did you experience something like that, or just no sign of improvement at all on the oral steroids?

Thanks so much for reading this and hoping for your reply. Can email me privately **

Thanks,

Linda




Quote:
Originally Posted by jettwalker View Post
Diagnosed Aug 2010. Receiving treatment at Houston Medical Center.
8-9 years of sluething to determine. Receiving corticosteroid infusion treatment once a month. It has been very effective for me. Tried oral corticosteroids, without success. Can discuss physician via private email.
superwed is offline   Reply With QuoteReply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
What are the chances that I have Chronic Traumatic Encephalopathy? SpaceCadet Traumatic Brain Injury and Post Concussion Syndrome 5 04-08-2014 09:15 PM
Hashimotos bbbirdie Autoimmune Diseases 19 03-24-2014 05:21 AM
Difference between PCS and chronic boxer’s encephalopathy pbob10 Traumatic Brain Injury and Post Concussion Syndrome 11 03-01-2010 02:38 PM
Hashimoto`s encephalopathy HEmale General Health Conditions & Rare Disorders 1 02-10-2009 11:02 AM
encephalopathy flopper General Health Conditions & Rare Disorders 0 04-03-2008 09:18 PM


All times are GMT -5. The time now is 03:13 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.