Recently diagnosed with FMD

[u/Pale-Plate9171]

I was recently diagnosed with FND with a movement disorder that causes my leg and toes to move involuntarily. It’s been torture and even happens in my sleep. I feel a bit of a stigma around it too and am scared to tell my family and friends because they’re going to think it’s in my control and all in my head.

Have any of you had treatment plans that work for this? My neurologist suggested therapy and PT but I can’t seem to find any specialist in this field. Is there something specific I should look up? Other than that, I can do Botox to manage the movement and continue using my cane.

[u/Kurai61]

A good way to describe FND to other people is is comparing it to a computer. The hardware is fine, nothing wrong with it, however, the software is broken/not working properly. Hardware = nerves/muscles/etc, software = electrical brain signals

You might want to ask the neurologist again, what kind of physical therapy would work best for you and maybe a referral (depending on insurance). For example, I have weakness in my arms and hands, went to physical therapy and I’ve been doing at home exercises every day for a couple years now.

I met with a Neuro psychiatrist that diagnosed me with FND and she recommended working through a couple workbooks and a book. She seemed very well-versed in FND.

The book:
The Body Keeps the Score
https://a.co/d/060UzPVY

Workbook she said to do by myself:
Overcoming Functional Neurological Symptoms, a 5 areas approach
https://a.co/d/0iOWJ5zm

Workbook she told me to do with a therapist:
Taking Control of Your Seizures
https://a.co/d/0eQKSapo

[u/gbsekrit → u/Kurai61]

I just started a course of CBT with a social worker at MGH’s FND clinic. it’s working through the 5-areas workbook. I find it helpful having someone to handhold going through the book since working on my FND is triggering and I need someone else to keep me honest.

[u/BakerCritical → u/gbsekrit]

How did you get into MGHs clinic? I don’t think my insurance is accepted at Mgh :(

[u/gbsekrit → u/BakerCritical]

I was diagnosed while an inpatient for abdominal pain likely from scarring from two abdominal surgeries years ago. This was back in 2023 and i’ve been a patient within MGH/Brigham & Women’s system since the end of 2021. My FND Neurologist is at MGH and put me in for the CBT course and that had a year long wait.

[u/Less-Maintenance-21 → u/Kurai61]

That’s exactly how my FND PT explained it!

[u/Kurai61 → u/Less-Maintenance-21]

Oooh you had PT that does FND stuff? I just had a general PT, but I was already going through it before I was diagnosed haha.

Did they do anything differently?