History of the Site

I am not a doctor and none of this should be considered as medical advice.  For medical advice, consult a doctor.

I’m ScientistSeeking. I’m a physicist by degree, electrical engineer by trade, and aspiring neuroscientist. I have been diagnosed with a rare neuroendocrine disorder called Hashimoto’s Encephalopathy (HE).

I am fortunate that I finally received the correct diagnosis, but unfortunately I was diagnosed with something that very few doctors have ever treated. Considering this disease can cause irreversible brain damage, I decided I was going to learn everything I possibly can about HE and really take an active role in my treatment.

After joining an email forum for HE patients called HELPS, I realized other people are just as curious and research minded as I am. That is the other reason I started this blog, to save others a little legwork in their research.

I am primarily focused on the most recent case studies. Beverly Seminara has an excellent website with lots of case studies. Check out her site here.

I’m not sure how often she updates her site, because I have found several recent case studies that are not on her list. So check out my Case Studies tab to see some recent case studies. I’ve tried to include the link to the full text in cases where you can see the full text for free.

The blog portion of this blog is really just my own personal study notebook. It is my thoughts on what I have read and what I am experiencing. It is mostly technical.

8/16/12: I have been symptom free for a year and I am slowly but surely getting my life back as I want it to be.  Things aren’t the same, but they are ever so much better.  I have neglected the site as I didn’t find the need to research anymore.  So I am updating the site with a “Success Stories” section for people who have achieved an acceptable standard of living and how they did it.  Then I will pass the torch to someone else who is going to keep this site alive and be a resource for people with HE and those wanting to know more about it.  All the best to everyone out there!

8/17/12: Hello everyone! HE Silver Lining here! As of today I will be taking the torch from ScientistSeeking, and will be updating the research links on this page.  I am hopeful that within two weeks I will have posted all scientific papers published since she last updated the research links.  If anyone finds an article that is not listed on this site, please post the link in the comments section so we can add it.

  1. susan
    January 4, 2012 at 10:51 pm

    Hello,
    I also was just recently dx with HE. In fact just a month ago. I also have other autioammune dxs too. Including UCTD with features of lupus and scleroderma, myositis, autioammune colitis, hypothryodism, bla, bla, bla. LOL> I am eager to learn as much as I can also. I would like to learn to help my neurologist with my treatments. I know I am an overwhelming patient with way too many issues going on. I just got done with a five day IV infusion of 1000mg of methalpredison (spelling right) lol then a six day tapering dose of the same. I felt better at first, except for the very severe blood pressure it caused, but now I feel the symptoms are comming back. I also am on 200mg of Imuran a day.
    Hope we can find information together.
    susie

  2. May 18, 2012 at 9:36 am

    I’m so pleased to have found your site/blog!

  3. sweetashoney
    August 21, 2012 at 2:02 pm

    Thank you so much for your work and continued works. We are such a handful of sufferers its great to have this site.

    thanks again

    • August 21, 2012 at 5:54 pm

      I’m so pleased you found us, and that you find the site helpful. Best wishes to you!

  4. mom
    September 20, 2012 at 4:34 pm

    Just found your site, very interesting information. Thank you, have been researching this HE for a year now as I have a child with the diagnosis.

  5. M. Mientka
    September 30, 2012 at 9:36 pm

    Dear Hesilverlinin, who are you? IE what is your connection to HE? What is your story? Are you also a diagnosed HE person? Thanks AM

  6. October 7, 2012 at 5:09 pm

    Hi M. Mientka. I am also a patient with HE. I will make a brief post about “my story” on the main page. Thanks for your interest.

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