hashimotos encephalopathy

[vasilea]

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?

[mrsD]

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.

[gabriela]

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?

[jettwalker]

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.

[puma48]

Originally Posted by vasilea

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.

[joojee22]

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.

[fari]

Originally Posted by vasilea

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]

Originally Posted by jettwalker

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

[hesilverlining]

Originally Posted by vasilea

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.

[superwed]

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

Originally Posted by jettwalker

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.