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Old 02-18-2009, 07:32 PM   #1
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oldcarman HB User
H.E. a differential diagnosis for CNS Lupus

My wife suffers from an autoimmune disease called Hashimoto's Encephalopathy.
(Mayo calls it SREAT-streroid responsive encephalopathy with auto immune thyroiditus---Or it maybe a part of the nonvasculitic autoimmune inflamatory meningoencephalitis)

Lot of big words for a disease that has a few hundred diagnosed with it in the world.

The interesting thing of late however is that there are a few doctors that think it in fact may be the same thing as central nervous system Lupus.

It is a brutal disease. In addition to the neurological symptoms of shakes, tremors, numbness, weakness, sleeping up to 20 hours a day, short term memory loss, eye trouble--and on and on, hallucinations, paranoia, psychosis and dementia are also things she has to deal with.

As I have lurked around this lupus board and others, and read a lot, the similarity between the two diseases are unbelievable.

Is there anyone here who suffers from CNS SLE?
What treatments have proved the most effective?
Has anyone here heard of HE?

And how does your caregiver deal with the ride?

Lots of questions from a newcomer.

Thanks for the help.

 
Old 11-29-2009, 03:38 PM   #2
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sheenall HB User
Re: H.E. a differential diagnosis for CNS Lupus

I know this post is a little old, but I'm hoping you will still be able to reply.

I was just diagnosed with Hashimoto's Encephalopathy. My doctor and I thought it could have been CNS Lupus, but due to the various tests he performed, he is pretty sure it is HE.

So few people have been diagnosed with HE that I am having a hard time finding advice and support from others with it.

I saw some of your other posts regarding your wife's success with IVIG. I just finished a 6 day course of IVIG, but it didn't help. They want to try plasmapheresis, but I want to wait on that to see how well steroids work. The steroids are helping (30mg Prednisone per day), and I am lucky enough that I am not getting really bad side effects, but I have not reached "back to normal" like some others with HE have experienced on steroids.

I am an educated scientist and engineer. Ironically, I studied computational neuroscience in grad school, and now I have a neuroendocrine disorder that I feel is robbing me of my mind and of who I am.

Fortunately my very horrible symptoms like intense headaches, vision loss, numbness and difficulty speaking have decreased. However the vertigo is preventing me from driving and even walking for more than a few minutes.

I was diagnosed 2 weeks ago, and I have been presenting symptoms for about 2 months.

I would really like to hear what treatments your wife tried and what was successful. Also, if there are any doctors you would recommend. I don't mind traveling. I have heard the Mayo Clinic is good, so I have an appointment in January in Phoenix.

Maybe you could even give some advice for my soon-to-be husband because he has been awesome in supporting me while I have been sick, but I know it is hard on him.

Thanks a lot and I hope you get this message!

 
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Old 06-12-2010, 01:27 AM   #3
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Posts: 76
Hopeful always HB User
Re: H.E. a differential diagnosis for CNS Lupus

Quote:
Originally Posted by oldcarman View Post
My wife suffers from an autoimmune disease called Hashimoto's Encephalopathy.
(Mayo calls it SREAT-streroid responsive encephalopathy with auto immune thyroiditus---Or it maybe a part of the nonvasculitic autoimmune inflamatory meningoencephalitis)

Lot of big words for a disease that has a few hundred diagnosed with it in the world.

The interesting thing of late however is that there are a few doctors that think it in fact may be the same thing as central nervous system Lupus.

It is a brutal disease. In addition to the neurological symptoms of shakes, tremors, numbness, weakness, sleeping up to 20 hours a day, short term memory loss, eye trouble--and on and on, hallucinations, paranoia, psychosis and dementia are also things she has to deal with.

As I have lurked around this lupus board and others, and read a lot, the similarity between the two diseases are unbelievable.

Is there anyone here who suffers from CNS SLE?
What treatments have proved the most effective?
Has anyone here heard of HE?

And how does your caregiver deal with the ride?

Lots of questions from a newcomer.

Thanks for the help.

 
Old 06-12-2010, 01:36 AM   #4
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Posts: 76
Hopeful always HB User
Re: H.E. a differential diagnosis for CNS Lupus

I am sorry to hear your wife is suffering from this Hoshimoto. I also was just diagnosed with Hoshimoto Thyroidist. I had my new doctor ask me about my Lupus.. I was surprised when he did. I was tested for Lupus but was told I don't have it. I have the butterfly blotches on my face, both sides. I am surprised to read about your wife. I didn't know there was a link to Hoshimoto and Lupus. I wished I knew what to say or have better knowledge for you to share. All I can say it's no fun. I just been bothered mostly today with pain and swelling behind my left knee and noticed a lump by it. The pain is pulsating. I don't know what to think. I would like to know about your wife condition because maybe I am not knowing what to say or ask my doctor as in knowing what to check for. I pray for your wife, along with other people who are suffering this condition.
Sincerely,
hopeful always.

 
Old 04-07-2011, 08:56 AM   #5
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joseph42 HB User
Re: H.E. a differential diagnosis for CNS Lupus

Hi i know how you feel. I know because i have it too. My doctors at mayo was dr. Robert brown and dr. Bradley boeve and dr. Sean pittock. And dr. Mccekon. The difference between cns lupus and h.e. Is the presence of tpo antibodies. These are a marker. Please write back you are not alone
sincerly
john gerber

 
Old 04-07-2011, 10:37 PM   #6
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sheenall HB User
Re: H.E. a differential diagnosis for CNS Lupus

I posted a while ago, when I was first diagnosed. Well, it has been a long time and I've had a wild ride. I went to the Mayo Clinic in Scottsdale and they had me leaving in tears. They were horrible. They waived my bill after I brought it up and billing investigated and recognized the terrible things the doc said to me.
Anyway, I've done high dose steroids, IVIG, plasmapheresis, plaquenil, and on and on, none working. Plasmapheresis was the worst thing I ever did. I'd never recommend it to anyone.
I got worse and worse. The pain was so intense I would have to go to the hospital and just be sedated first to get me out of my misery while getting IV solumedrol.
Well I got an email that someone posted to this thread and I just wanted to say that after all this time and feeling like I was living in a horror movie, I started Imuran about 6 or 7 weeks ago. I feel like a new person. My doctor said he hasn't seen me this good in 2 years. And the Imuran hasn't even reached it's full efficacy time yet!
So from someone who tried all the treatments in the case studies, plus some others to just try. I went to naturopaths too.
Imuran plus Myers' IV cocktails gave me a life back. I'm still in a wheelchair, but it may be temporary. I'm back to work full time at full mental capacity.
I almost lost hope. Don't lose hope!
Oh and if you search PubMed, there are 2 Greek studies on selenium from l-selenomethinonine (other selenium supplements don't work), that have been proven to significantly reduce anti-TPO antibodies. I tried it and it works, my anti-TPO abs are the lowest they've ever been. Almost close to normal range, from being insanely high at the start. And this selenium is OTC. Just make sure it is no more than 200 mcgs.
I thought nothing would work, but finally, I found something that works! Just thought I'd share. Feel free to post back with questions.

 
Old 04-08-2011, 03:04 AM   #7
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joseph42 HB User
Re: H.E. a differential diagnosis for CNS Lupus

I wish you went to mayo in mn. They are the best. It is here where they started studying this syndrome. One of the doctors wrote many papers his name is dr. Bradley boeve m.d. Look him up. So what happend at mayo az. What type of salineum do i take

 
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