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Visitor Survey

Visitor Survey

site update

Tuesday June 23rd, 2015

The website has been down several days. I have noticed a huge influx of “D.O.S” attacks to the site and therefore took it down and blocked access to files. This seems to have been effective in the last 24 hours to prevent further attacks. There have also been some hacking attempts. Several of the video file pages were hit in a suspicious manner as well around this time.

I plan to continue to plumb the internet for useful studies, articles, videos, and content that is relevant to patients with Hashimoto’s Encephalopathy, Autoimmune Encephalopathy, as well as many conditions that can be seen as comorbid or occur along with autoimmunity. I hope this broad spectrum of information is helpful to folks, not only with HE/AE but with other autoimmune conditions as well as other conditions across the realm of modern medicine. As far other portions of the site, those may change. Please “watch this space”.

Thank you to everyone who visits the site. We hope you find it useful in your journey to understanding and making more informed health care choices with the input of your clinician and/or medical team.

Just a reminder, nothing on this website is offered as advice in place of your own clinician’s training and expertise. Please keep that in mind not only while viewing the contents linked to from this site but also other sites who are not monitored by physicians and especially by those who are not familiar with your particular medical case.

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.

Sunday May 31st, 2015

I’m still trying to get caught up to more recent links posted to Hashimoto’s Encephalopathy (HE) / Autoimmune Encephalopathy (AE) (the name recently changed again), Understanding Hashimoto’s Encephalopathy – A Support Forum, and Autoimmune Encephalitis (All types including Hashimoto’s Encephalopathy) as time permits. As I said in a previous update, I’ve been working on another project that has been very time consuming. It is a rewarding task, however, and I think it will be useful to those in the “HE/SREAT” and “AE” communities.

As I said in a previous update, I am tagging each link/post from the above groups with the initials of the person who posted it and a permalink to the Facebook post. The reason for this is so that members of the “HE Groups” can easily find links by a certain poster’s initials or refer back to the original post on Facebook if they are a member of that group. I’m hoping this will make finding information easier for group members as well all have moments like “I remember so-and-so posted about such-and-such but I can’t remember the name of the study/article.” It an also be helpful if you remember there was a comment on that thread to something you wanted to find but can’t find the thread itself. Hopefully this helps people keep track of studies and information they find useful without having to remember which group it was posted. Since the groups sometimes change names or information gets moved around or edited, this information remains the same regardless.

Remember, you can only see the original Facebook post if you are a member of that group. If you are not, you will see the groups main page and have the option of joining if you wish. All these sites are closed and require admin approval before joining.

In other news, I have been seeing a slow increase in website hits as well as new members both in the “HE Group” category and “Free” memberships. Thank you to those of you who use the site. We’d love to hear your feedback. Please feel free to get in touch with us on the website or by leaving a comment below. We have a site visitor survey on the front page as well,  so please feel free to use it!

At this time, dxiled itself is not on social media as I am working through social media for others at this time and don’t have time to catch up my own personal social media sites. Someday, if ever I have the time, I may get dxiled on Twitter. We shall see.

Thank you again to those who find this site to be a resource. Hoping that you find the information you’re looking for and that the information you find helps you make informed choices, obtain better medical care, and experience a better outcome as an informed patient.

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.

Tuesday April 4th, 2015

I have been trying to catch up on links from the various Facebook HE/AE groups as promised. I have managed to add several more and now I am referencing the initials of the person who posted the link and the original Facebook permalink.

Please note: the permalink will take you to the post but only if you are a member of that facebook group. You can still read the study or article but you can not see the original Facebook post if you are not a member of that group.

This is just to track to posted the link and to what group. I thought this feature might be useful for those trying to keep track of who posted something, when, where, etc. You can search by the person who posted if you type in their initials in this format – ex. K.T. in the search bar. Any post with that persons initials in the post will come up.

This is a small change and effects posts going forward from August last year (I think). I’m trying to catch up on the backlog. Not all HEGroup posts will have this because there are just too many for me to catch up on right now. I may be able to at a later date once I am caught up.

If this is confusing, disregard and just enjoy being able to find the studies and articles that are applicable to you!

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.

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.

Tuesday, 17th March 2015

I have been behind on updating the site with links and studies posted to the FB groups which this site was originally created. I’ve not been feeling well myself (when have I felt good?) the last few weeks with some explosive emotions and other issues. To add to that, we are facing some financial struggles which compounds my stress. I am, however, still collecting the links and will be adding as I find the time to do so.

I am also working on a “top secret” project in terms of “curating” research studies on Hashimoto’s Encephalitis/SREAT and creating a study database from studies published in 2014. This takes some time to collect the data as there are over 1,000 studies that list Hashimoto’s Encephalopathy/SREAT in 2014! This is great news for those diagnosed with HE/SREAT but it makes for long and tedious work for me but hopefully that work will also help this site to include a huge influx of studies.

I am also working on some other small projects which I hope to have done by April, 2015.

I hope each of you who visit this site and use the information you find will bear with me while I’m moving toward what I hope will be a diagnosis (seeing the neurologist 20th March, 2015) and as I work on other projects in addition to this one.

I wish you well on your journey and hope we can meet at the light at the end of the tunnel!

 

– k

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.

Saturday, 31st January 2015

I have added a “members” section in order to create some boundries on content that is specifically geared toward the Facebook groups and the projects that pertain to them as well as a place for me to put more personal content that is relevant to clinicians. Membership for both these groups is free. If you are a member of one of Hashimotos Encephalopathy (HE) / Autoimmune Encephalopathy (AE)Autoimmune Encephalitis 

(All types including Hashimoto’s Encephalopathy), or Understanding Hashimoto’s Encephalopathy – A Support Forum – please feel free to contact me using the “Contact” page and request a free membership to access the “group only” content.

Likewise, if you are a clinician with special interest in my case, please contact me using the contact form for information on how to log in and review detailed notes on my personal case.

In the future, I will be adding more content that will be available to members with free memberships. As has been the case, all links to studies and articles will remain available for everyone to view and a membership is not needed to view the majority of content on this site.

I am continuing to research my own health conditions and am reading through old journals and medical records to help myself more effectively communicate with the doctors and neurologists I am/will be seeing in the future. I also continue to be active on the Facebook groups above as they are an invaluable resource for myself both in knowledge and in support while I forge ever forward in getting answers and a diagnosis.

I hope this website will add value to the research materials and support information available on the internet, not only for Hashimoto’s Encephalopathy but other neuro/endocrine disorders as well as a variety of other rare health conditions. I know from my own experience how hard it can be to find good research, to understand it, and to link it together to self-educate while on the long and often lonely journey to a diagnosis. I hope whatever you find here helps you as much as it helps me.

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.

Monday, 26th January 2015

I have been trying to split my time between updating this website with links posted to Hashimotos Encephalopathy (HE) / Autoimmune Encephalopathy (AE) and Autoimmune Encephalitis (All types including Hashimoto’s Encephalopathy) on Facebook and working on some research, specifically on Hashimoto’s Encephalopathy (also known as SREAT). These two tasks take up an extraordinary amount of time as does the duties of wife and parent. In between these many tasks, I am reviewing my own journals from the onset of my illness to get a timeline together to help me understand where I have been and what events/symptoms have lead to my current state.

I’ll be continuing to tweak the layout of the site, add new studies and articles from the groups, as well as expanding the research into other areas and other diseases/syndromes.

If parts of the site seem not to work correctly or are a bit disorganised, please forgive me. I’ve been working on the site and rearch almost simultaneously and with a month long migraine, I’ve been having difficulty concentrating. Please bear with me as I fix things whilst I go along.

Thank you for reading. I hope that what you find here will be of some assistance to you in your search.

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.

‎Saturday, ‎10 ‎January ‎2015

Now that we are in the new year, I have decided to make the layout of the site a bit more “light”, making it easier to read. I’ve also reordered some of the menus to add more of a logical order.

You will continue to see cosmetic changes as well as new posts with medical study links, articles, and other health resources. I hope to add some downloads to the website, resources that can help patients organise their records and information, more educational aids, and perhaps some personal information about my  health journey.

Thank  you for following along with us into the New Year!

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.