Hoosierfans
Senior Member
- Messages
- 266
Hey all!! It's been a LONG, STRANGE trip as they say, but after over a half of a year of testing (still more to go), we FINALLY have a definitive diagnosis that fits my symptoms and disease progression! I've had so many people here who have offered so much help to me over the last 2+ years, that I would be remiss if I didn't start of with a big THANK YOU to @Learner1, @Hip, @mitoMAN, @Gingergrrl, @crypt0cu1t, the late SK2018 (for sharing his story) for answering countless questions, suggesting testing and physicians, pushing me to continue to dig down for answers...all of which have ultimately led me to a definitive diagnosis and new physicians with new treatment plans in the very near future!
. For more than 10 years I've chased various "suggestions" by various medical professionals and mostly functional medicine docs -- its Lyme! It's co-infections! It's mold! It's thyroid! It's [fill in the blank with their pet issue de jure}. But none of it ever *quite* fit my symptoms, nor did I get better with their suggested treatments (some of which went on for years -- hello antibiotics!), and usually was supported, at best, with "patterns" in my bloodwork suggestive of that particular diagnosis (i.e. CIRS /mold) but the markers of which could have indicated any number of other issues.
My diagnosis: Autoimmune Encephalitis with Comorbid Small Fiber Neuropathy and / or Chronic Inflammatory Dymelinating Neuropathy
Symptoms: Intense dizziness 24/7, lightheaded, hypotension & POTS, brain feels 5 x larger than my head, skin / nerve burning all over arms, legs, face and inside my brain, cognitive decline (used to be an attorney, now I have severe difficult following a recipe), severe memory issues, akathesia, intense anxiety, depression (sometimes bordering on suicidal), fatigue, food sensitivities, sensory sensitivity (especially multiple people talking or sounds at one time).
Current ME /CFS scale: Severe
I wanted to start this post to pass along any knowledge I have gained along the way, and in case anyone else sees themself in my symptoms. This started with mono for me in 2006, and I've seen over 50 physicians all over the country. But they all seemingly missed doing the right tests or digging down enough, until I started working with my current internist last fall. I've been accepted into the practice of a neuroimmunologist whom I will see in about two months, and I anticipate that we will be pursuing IVIG and possibly meds like Rituximab etc. So, this thread will track my progress. I also have an appointment with an immunologist who specializes in PANDAS / CANS and will be meeting with him to get his opinion on how to proceed.
I am so grateful to this community and the wealth of knowledge it has. I have brought several pieces of information regarding testing, medications to try, clinical studies etc. to my internist from this group...and that led him and I to where I am today -- with FINALLY a definitive diagnosis and treatment path that can get me healthier.

My diagnosis: Autoimmune Encephalitis with Comorbid Small Fiber Neuropathy and / or Chronic Inflammatory Dymelinating Neuropathy
Symptoms: Intense dizziness 24/7, lightheaded, hypotension & POTS, brain feels 5 x larger than my head, skin / nerve burning all over arms, legs, face and inside my brain, cognitive decline (used to be an attorney, now I have severe difficult following a recipe), severe memory issues, akathesia, intense anxiety, depression (sometimes bordering on suicidal), fatigue, food sensitivities, sensory sensitivity (especially multiple people talking or sounds at one time).
Current ME /CFS scale: Severe
I wanted to start this post to pass along any knowledge I have gained along the way, and in case anyone else sees themself in my symptoms. This started with mono for me in 2006, and I've seen over 50 physicians all over the country. But they all seemingly missed doing the right tests or digging down enough, until I started working with my current internist last fall. I've been accepted into the practice of a neuroimmunologist whom I will see in about two months, and I anticipate that we will be pursuing IVIG and possibly meds like Rituximab etc. So, this thread will track my progress. I also have an appointment with an immunologist who specializes in PANDAS / CANS and will be meeting with him to get his opinion on how to proceed.
I am so grateful to this community and the wealth of knowledge it has. I have brought several pieces of information regarding testing, medications to try, clinical studies etc. to my internist from this group...and that led him and I to where I am today -- with FINALLY a definitive diagnosis and treatment path that can get me healthier.