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Visitor Survey

Visitor Survey

Monday, April 13th 2015

I have made some recent changes to the membership structure to this site. All of the HEGroup Links have been restricted to “HEFree” membership only. This membership is open to members of the various Hashimoto’s Encephalopathy or Autoimmune  Encephalopathy Facebook groups. If you are a member on these groups, you can request a free membership to access links posted to any of these groups by visiting the Members page. Membership is FREE.

To this end, I have also updated some of the links on the Facebook timelines of these groups so members across any and all of the groups can easily find studies and articles. I will continue to update as much as possible while continuing to work on some other projects which I hope will help educate patients.

All other content is still accessible to the general public without membership.

I am continuing to work on other project and am very active in the Facbook support groups, such as Understanding Hashimoto’s Encepalopathy – Support Forum. I have also added a member only section to the website with my own “patient history”. It’s my way of sorting through many years of assessments and health information, if only to help myself understand what’s going on. I have had two recent and unsuccessful appointments with neurologists – one resulting in no formal diagnosis with not much prognosis for a diagnosis which addresses the totality of my symptoms and the second which was a comedy of errors resulting in records not being received and which lasted maybe 15 minutes,  including the most brief neurological exam I have ever received. I’ll be seeing my GP in three weeks to see if anything will come of sending my records to the second neurologist. I have thought about sharing my “patient history” with either of these neurologists but due to the reception I’ve received and lack of interest, I’m hesitant. I may share this information with my GP to see if she feels it’s relevant.

I hope everyone searching for information who finds this site is comforted by the fact that no matter what your medical condition, you’re not alone in your struggle. There are lots of excellent support groups and forums available online and in local communities which can provide support.

If you are in the UK and have been diagnosed with Encephalitis or Encephalopathy, I recommend talking with someone at the Encephalitis Society. I found them to be compassionate and informative.

Until the next update, I wish you well on your personal journey.

This website is not a substitute for independent professional advice. Nothing contained in this site is intended to be used as medical advice. No articles, personal accounts, or other content are intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professionals advice.