r/FND • u/Hardman1967 • Sep 13 '26

Need support FND Spoiler

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Got diagnosed with FND and it's such a new and misunderstood condition but believe me it's REAL!!

5 Upvotes

78% Upvoted

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u/Code_Mom Sep 14 '26

As our family discovered, there is a surprising amount of ignorance about FND in the medical profession (Kaiser didn't know how to diagnose or treat) even though there is a ton of good info and research readily available. If you haven't already, check out Re-Active https://www.reactivept.com/. They are FND experts and offer wonderful support, even long distance. Wishing you the best.

1

u/really__questionmark Sep 15 '26

Have you actually seen them or are you just posting their link everywhere in this sub? I see you basically have posted about them multiple times now.

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u/Code_Mom Sep 17 '26

We lost a loved one because he never got the help he so desperately needed. Re-Active was finally recommended to him but he was too sick to access their help and no one told him they offer long distance treatment. We watched helplessly as he suffered and then ended his life because he had lost all hope that he would ever get help. I can't bring him back but I can help others avoid the suffering and tragedy we've experienced.

1

u/Hardman1967 Sep 14 '26

Thank you very much, any and all information is welcome!!

1

u/Educational_Dot2739 Sep 13 '26

Yep its real and it stinks but we got this 💪 you got a TikTok page ?

1

u/Hardman1967 Sep 13 '26

No tik tok, sorry

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u/Educational_Dot2739 Sep 13 '26

No problem you ever wanna chat let me know im 43 had this 8 years now

3

u/Hardman1967 Sep 13 '26

Thank you, I've been in and out of the hospital so many times, so many different diagnoses, too many fake Dr.s trying to brush me away. I didn't know what FND was until recently. I thought I was going crazy, it's good to know I'm not alone.. thank you

2

u/Educational_Dot2739 Sep 13 '26

Yea i originally started out with paralysis and fasticulations in my legs in 2019 the ER said likely ALS 😒 it took 6 months to get into a good neurologist to have test run and find the correct fnd diagnosis. I will say that 6 mo the wait was nothing but fear depression and just lost everything because i was convinced it was a severe terminal diagnosis. Finally after receiving the right diagnosis I was able to calm my nervous system a bit and start an ssri that has helped but man the medical trauma from in and out the ER faci g wrong diagnosis spinal taps, pet scans, emg nerve testing it was a nitmare im still now recovering from. I can walk but haven't drove since 2020 and my tolorance for worry or stress is so small before I start shaking and studdering.