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dohoward

Could this be PANDAS?

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Hi all,

I am new to this forum as well as new to understanding PANDAS and other chronic infections.

A couple months ago I was diagnosed with Hashimotos disease (autoimmunity directed at the thyroid). I am a 20 year old male and about 3 to 4 years ago I started to notice some pretty abrupt changes in the way I felt both mentally and physically. My main symptoms which have progressively gotten worse have been general fatigue and pretty severe anxiety, depression, cognitive impairmentand, and what feels like derealization. I used to be a pretty upbeat, outgoing, and confident person. Around my senior year of high school I really started to crumble. I was able to go on to college and did well academically for two years but in that time I was increasingly having a harder time dealing with these onset problems. For the past few years I just was associating these changes in my mental and physical state to be situational and I  took it all quite personally. Then this past summer, I was diagnosed with Hashimotos disease by a functional medince specialist who unequivocally associated my onset symptoms to this disease. 

 

Having made some significant dietary/lifestyle changes It has been a few months and I have not noticed any changes in my symptoms/functionality.

 

Finally, December of 2017, I went to see a internal medince doctor who both specialized in thyroid issues as well as more comprehensive issues. After reviewing my labs he was quick in assuming that my symptoms and other autoimmune issues might be connected to a deeper problem, like a chronic streptococcal infection like PANDAS, or even Epstein-Barr.

Having done a little research it seems that PANDAS is mostly found in younger kids and the symptoms are slightly different mine: OCD, tics. 

My doctor said that he has treated adults with PANDAS all of which had a variety of symptoms and issues. 

I’m waiting to get the results of some blood work that my doctor collected which supposedly is testing to confirm that I have a chronic infection like PANDAS. I’m very anxious to see the result as I worry that my symptoms/story doesnt sounds like PANDAS based on some of the research I’ve done. I hope I’m wrong.

 

 

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YES.  I had it.  It started at like 14 but the feces hit the fan at 28.  Yes yes yes.  Keep checking for medical issues as the root cause . I had derealization too when it was at its worst, and I didn't know what it was.  And what's stranger is that I don't know if it truly was derealiztaoin or if I was having a seizures and it was my eyes moving like that.  It seemed as if I was watching a movie in slow motion through an old projector and the motion was not fluid, like normal motion, but "jagged" like an old home movie . Someone described her seizures to me like that without my having mentioned anything.  So who the knows?

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I wonder if for some, post-puberty PANS might display differently than it does for a 10-year old, for example.  Looking for infectious causes seems appropriate to me.  Don't hesitate to check for chronic lyme and co-infections, even if you don't recall a tic bite.  Your current doctor may or may not believe in chronic lyme, so you may have to go elsewhere for that.

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I second the investigating Lyme. So many of us with PANS/PANDAS also have Lyme, and it can cause these symptoms without PANS, too.

And yes, PANDAS/PANS can absolutely affect adults! I'm 22, and my worst attack was at 19.  I hate that "pediatric" is in the name at all. I have a feeling a lot of cases in teens and young adults are missed because everyone assumes it's a pediatric disease. I'm looking forward to the day when it's officially renamed Basal Ganglia Encephalitis, or when more doctors are willing to consider it a type of autoimmune encephalitis (my PANS neuro says it is).

That being said, PANS/PANDAS is just one type of autoimmune disease that attacks the brain. There are plenty of other kinds of autoimmune encephalitis, so if you don't have classic "PANDAS" per say, it's entirely possible that you have some other neuro-immune disorder.  I believe there's something called Hashimoto's Encephalopathy, but I don't know much about it. Have you looked into that?

Over the last three years, usually my depression, anxiety, and cognitive problems have been the main issue, though I've also had movement symptoms and anorexia at times.  When I'm in a flare, I feel like I'm in another world. I can still see and hear everything that's going on, but I feel detached from myself and reality. I'll have a constant sensation of being trapped inside my thoughts, yet completely outside of myself because I lose my personality. It's like life happens without me.  I definitely think PANS presents differently in kids than in adults.  

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