Please Help: Could this be PANDAS/PANS, FND, or something else?

Posted by bunnibells @bunnibells, Apr 16 12:15pm

Hello everyone, my name is Katelyn and I'm 18 years old. I've been battling neurological and mobility issues since I was a child and only gotten worse when I turned 14. My previous and current (now fired neurologists) say I have FND and that I just need extreme psych help. I have numbness, tingling, paralysis in my hands and legs, seizures, chronic migraines, my foot turns inward, tourettes, and widespread pain all the time. My Tourettes started when I was around 4 years old and went away and came back full force years later. I have had strep, upper respiratory infections, lung infections, flu, and other infections numerous times every single year, and sometimes back to back with zero breaks. Because of me having those infections constantly since I started Pre-K at age 4 , I've only gotten worse in health, socially, and developmentally. I was diagnosed with severe OCD, Complex PTSD from sexual abuse, and schizoaffective disorder - bipolar type 1 mania. Every time a doctor sees my chart they immediately say "It's just FND and you need psych help to feel better and to stop all these symptoms". Well, I listened to them and yet it's been 5 years; ER visits, hospital visits, and numerous psych appointments with numerous psychiatrists. Ive been on almost 20 medications to treat hallucinations, mood swings, and my OCD, and surprise surprise nothing helped even on the max dosages and countless medications I'm on. I'm also diagnosed with POTS and an unknown GI disorder that makes me lose extreme weight and prevents me from eating so I rely on mushy foods and protein shakes. And every time I get sick or get a stomach bug my paralysis, weakness , and other neurological symptoms come back in full force. My appointment yesterday with my now-fired neurologist said "Walk you need to walk, because you are training it to not walk and it couldn't be PANDAS, you're too old now, and its only in pediatric patients". The reason why he said to walk is because I'm unable to walk right now due to weakness and paralysis so it doesn't make sense to push myself if I can't walk. But I'm also confused because PANDAS can cause all these symptoms and every time I go to the ER, they perform a certain blood test due to my pain levels and it shows every time that I have extreme inflammation in my body (my legs which always hurts). So would this still be FND? Or could it be PANDAS or something else? I've also been tested already for MS and it was negative.

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And my parents don't think I actually have schizoaffective disorder, they think something else is wrong with my autoimmune system or neurologically.

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@bunnibells

And my parents don't think I actually have schizoaffective disorder, they think something else is wrong with my autoimmune system or neurologically.

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Young girl I know is now getting much better based on her treatment at CFNC, Carolina Functional Neurology Center. According to her mother, a healthcare professional, CFNC patients come from all over the US. I also understand from her mom that CFNC offers a free 15-minute consultation to be sure they are a good fit. Their website is: https://www.carolinafnc.com
Hope this helps anyone dealing with central and/or peripheral nervous system issues. Believe me, I have no interest in CFNC other than to help those with these miserable disorders.

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Have you shared this with the PAN/PANDAS group(s) on FB? They have lots of experience and professional referrals.

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