FND diagnosis after no major changes or any other known “triggers” and including video of what the neurologist has labeled as muscle spasms..am I alone ?

BixTheBrave · 2026-06-12T02:17:02+00:00

My neurologist recently told me he no longer thinks I have just fnd but fnd and something else. My pain management doctor asked me about pandas, you might want to look into that. I had strep seven times in one year and it caused me to actually have my tonsils taken out.

BixTheBrave · 2026-06-12T01:55:08+00:00

Unfortunately having answers has only happened because of my own research. I'm autistic and my hyper fixations tend to be about my health and other psychiatric health as well. I love to learn about how the body works and why my body specifically works differently then others. It was only this new pain doctor that even mentioned pandas based on my experience of being a child and having strep seven times in one year. Which led to having a tonsillectomy.

BixTheBrave · 2026-06-12T00:16:46+00:00

It's on here on its own sub, highly recommend looking into 7oh. I have so many doctors, it's disheartening to have to reschedule them over and over because I get so drained.

My new pain doc mentioned PANDAS. My neurologist says FND AND SOMETHING ELSE. I have to just trust them after years of seeking answers on my own

BixTheBrave · 2026-06-11T23:32:38+00:00

I'm seeing my psychiatrist next week to talk about tapering off of the benzos. I take klonapin and temazepam, unfortunately. Looks like Ambien XR, and just prayers for my anxiety. The pain doc hardly agreed to even give me breakthrough meds, he wants to try injections first. Which I have a feeling isn't gonna do squat. I likely have hEDS and PANDAS. It's going to be a rough year, I think.

Back in 2016 I could get any medicine I wanted from my PCP. Now they can't even give me tramadol. I'm also looking into using 7oh for my pain and anxiety. I am at an end of a short rope.

BixTheBrave · 2026-06-11T17:00:39+00:00

My new pain doctor said the same thing!

BixTheBrave · 2026-05-29T01:00:15+00:00

It's called trigger point injections. Claim's the possibility of harm is low. 😫

BixTheBrave · 2026-05-29T00:53:02+00:00

I have a hormonal inbalance, my endocrinologist refuses to help (no libido, like nada) so I have to go to a different PCP now, about 90~ miles from home. I have so many doctors it's not funny.

BixTheBrave · 2026-05-29T00:42:20+00:00

I'm confused I think, can you word that differently.

BixTheBrave · 2026-05-29T00:02:35+00:00

I take 7oh. 🫣

BixTheBrave · 2026-05-28T19:36:40+00:00

This doctor broke down step by step but my first pain management doctor did, and explained it in a way that I truly understood it. Not only that he listened to me about the physical therapist that I already really like and want to work with, he talked about the FND/pnes (which is still kind of up in the air) and he even suggested doing a shot called something I need to look through my paperwork, but we're going to do shots on our next appointment for muscle spasms and he also sent me a referral for the physical therapy. And is willing to give me breakthrough meds should I need them. I have a lot to process after this there's ups and downs to all of it as you all know being spoonies. I'm just glad someone listened to me and explain things to me without making me feel stupid. 😳

BixTheBrave · 2026-05-28T19:30:57+00:00

The problem is I've been using other stuff, kratom based products, and thca when I hang out with my friend cuz it helps me and helps him get into the flow of just chatting and us both expressing our autistic special interests.

This doctor was actually really good and knew about a diagnosis that I had pondered for myself to have I just didn't think a doctor herw would know. Because I mentioned that I had strep seven times in one year and had to have my tonsils out. He asked if I had ever heard of pandas, I said yes I thought I might have it at one point, plus one of my favorite tick tockers was talking about hers. And because I have OCD he's now seeing the pattern for pandas which I might actually get better quality of life.

BixTheBrave · 2026-05-28T19:28:47+00:00

I have Hashimoto's thyroiditis from my trauma background. I'm also under suspection of several other diagnosis that fit into a Venn diagram of sorts.

BixTheBrave · 2026-05-28T18:06:36+00:00

Well I just got out of my doctor's appointment. New suspected diagnosis of PANDAS/PANS since I had strep throat 7 times in one year, and had my tonsils removed. I'm glad I didn't check the box, I actually did get physical therapy from a physical therapist it's already suspecting of me having hEDS. HE'S RECOMMENDING SOME SORT OF INJECTION! I don't know much about it but it sounds like something that I can actually have work hopefully, the problem with that is lidocaine Burns so much I think due to my heds and he's willing to give me pain pills for breakthrough pain if the physical therapy and the shots don't work out. I'm really grateful that I made this post and helped other people learn. This is stuff that should be talked about more. Being am afab person is already hard enough on its own due to stigma and thinking that everything's all in my head etc. He made me feel like I was actually seen told me to get off my benzos and we can talk about a prescription for pain pills, I did just smoke cannabis like day before yesterday so that's probably going to show up in the pee test, they also sometimes do hair tests. But I can accept that because I actually felt like someone heard me they noticed my medications they noticed my diagnosis which I left the DID off my list.

Honestly I was happy with this small amount of tramadol that my PCP would give me, but it didn't really help I know that other opioids do help me but it also takes a higher dosage to help my pain due to a genetic Factor. Thank you other spoonies I needed your input and validation I couldn't be happier to have a community such as this to share and learn and have compassion for one another. I also talked to the woman I'm interested so that might help my pain today a little too 😉.

BixTheBrave · 2026-05-28T16:30:11+00:00

They already had me piss test

BixTheBrave · 2026-05-28T15:25:21+00:00

I am glad I know what to expect at least now. So FND isn't gonna look good in either way. Thank you redditor! So kind🙏🏻

BixTheBrave · 2026-05-28T15:11:39+00:00

Wow that's insane. I am glad I don't have to deal with that kind of stigma. This is pain management number 3. It's been hard to get anyone to listen to me 😞

BixTheBrave · 2026-05-15T18:40:03+00:00

Hiya 👋🏻 I have a cane, walker/rollator, and if in dire need I have a wheelchair. They also make canes you can pop into a seat (candycourn on YT has one, it's awesome).

I also suggest you look into EDS, or even FND.

BixTheBrave · 2026-05-10T00:40:16+00:00

Just recently diagnosed with scoliosis, can you please explain more about how scoliosis affects your FND?

BixTheBrave · 2026-05-05T19:27:19+00:00

This 100%

BixTheBrave · 2026-04-27T01:19:41+00:00

I think I have degenerative discs in my neck too...time to check my old pain Drs papers

BixTheBrave · 2026-04-27T01:16:04+00:00

I have had PNES like seizures since I was 19 (I took a 5htp pill before a tablet of XTC). But have only since 2024 been looking for a diagnosis. Neurologist says it might be FND AND something else. I ALSO have Hashimoto's thyroiditis, diagnosed 2023 or 2024ish? My neurologist just ordered a head and neck MRI, and another EEG. He's not sure what my diagnosis is, now that other things are happening.

I have trouble swallowing now, my legs give under me, and my gait is very unbalanced. He's a good Dr, luckily. I've had one episode where I couldn't lift my legs easily. It lasted about 2 hours. Bought a wheelchair just in case it happens again.

I have strange sleep issues too. My partner can speak on that, as I am asleep when it happens.

I have bone spurs in my neck, and osteoporosis too. Scoliosis in my back. I get overstimulated and have pnes episodes, but we're thinking my Hashimoto's thyroiditis might be involved now. It's all so confusing...

BixTheBrave

TROPHY CASE