Dealing with encephalopathy
 

Hi. I'm new on here today and joined because I'm struggling to deal with the frustration of neurological illness that's been diagnosed as encephalopathy and is likely some kind of atypical steroid resistant Hashimoto's Enchephalopathy. Over the past year I've undergone extensive testing and specialist consultations that have ruled out other conditions like neoplasms, MS and ALS/PLS. I also have Graves Disease, which was previously diagnosed. My thyroid was removed several years ago to control the Graves symptoms, although it's now apparently believed that anti-thyroid antibodies are attacking my motor neurons and eye muscles in particular.

My symptoms include ataxia, abnormal gait, muscle spasms, double vision, intermittent brain fogginess and headaches. I've been hospitalized twice over the past several months. Fortunately being in Canada I have access to decent and mainly free health care and I don't want to be critical of my doctors but this has gone on for a long time and I feel that my life has become more restricted as time has passed. I can't travel, I can only go a short distance from my home as my mobility is significantly restricted and I need assistance to walk. I can't do anything that involves lifting or carrying things because of my lack of balance, and due to the vision problems that have worsened over the past six months I can barely watch TV and it's often difficult to read properly. I feel like I'm complaining a lot here but I think I'm really trying to validate my frustrations and figure out how others cope with this stuff.

Welcome and I am sorry to hear of everything you are going through. You're joining a great community here who will share in your days. I joined looking for ideas, answers and community - you will find each of those here. Take care.

Hello lobsterfan: Welcome to NeuroTalk. :welcome_sign: May the time you spend here be of benefit. :Grin-Nod: I see you're listed as being a "Guest". So I don't know if you'll be spending additional time here on NT or not. I noticed you wrote that you have difficulty reading. So perhaps being here on NT may be a problem for you.

I'm not sure where to direct you from here, on NT, should you wish to continue posting. One possibility might be the general & rare conditions forum:

https://www.neurotalk.org/forum2/

Another option might be Autoimmune Diseases:

https://www.neurotalk.org/forum44/

Under any circumstances... I wish you well in your efforts to heal.