Nin Posted April 30, 2020 Report Share Posted April 30, 2020 Before I was diagnosed with pots the neurologist said I might have fnd. I haven't seen her since to say I've been diagnosed with pots. Is it common to have both? I get a lot of twitching, tremors in my left leg/arm and especially siezures upon walkkng. I have heard people say they get this with pots. Makes you wonder how many people with pots get misdiagnosed with fnd. My brain in frazzled now because I'm thinking could it be both. I'm still getting siezures everytime I go for a walk even thou I'm on beta blockers, I am upping the dose so I'll see if that helps. If this don't work I'm going to find another doc as my current one is not being very helpful Quote Link to comment Share on other sites More sharing options...
POTS in hawaii Posted May 1, 2020 Report Share Posted May 1, 2020 What is fnd? Quote Link to comment Share on other sites More sharing options...
Nin Posted May 1, 2020 Author Report Share Posted May 1, 2020 It's stands for functional neurological disorder. You get neurological problems but structurally your brain looks ok. Quote Link to comment Share on other sites More sharing options...
BaPon Posted December 24, 2023 Report Share Posted December 24, 2023 Yes. I have both. My experience has been that until you get the Dysautonomia under control it will be very difficult to improve the FND. I would suggest that you find a team that understands both. This is VERY challenging! There are physical therapists who specialize in FND movement disorders who also understand PoTS. I hope this helps. Stay strong. It is a long and arduous journey. Quote Link to comment Share on other sites More sharing options...
little_blue_jay Posted December 25, 2023 Report Share Posted December 25, 2023 On 4/30/2020 at 7:46 PM, Nin said: Before I was diagnosed with pots the neurologist said I might have fnd. I haven't seen her since to say I've been diagnosed with pots. Is it common to have both? I get a lot of twitching, tremors in my left leg/arm and especially siezures upon walkkng. Were you ever diagnosed with FND? How are you doing now? Do you still have the seizures? Quote Link to comment Share on other sites More sharing options...
BaPon Posted December 25, 2023 Report Share Posted December 25, 2023 21 minutes ago, little_blue_jay said: Were you ever diagnosed with FND? How are you doing now? Do you still have the seizures? They diagnosed non epileptic seizures over a 6 day hospital stay in Sept of 2020. Video EEG was used along with ruling out other possible causes. I also have functional dystonia (and organic dystonia) and what neurology thinks is functional foreign accent syndrome. I did a 9 month intensive out patient program for the seizures and I now (finally) have specialized PT for functional Dystonia. Improving now that PoTS is diagnosed and under better control. I also had bilateral spastic entropion (lower lids flip under) and bletherospasms. I had bletheroplasty for the entropion. Other areas of the body are impacted as well (GI and GU). Quote Link to comment Share on other sites More sharing options...
BaPon Posted December 25, 2023 Report Share Posted December 25, 2023 Just now, BaPon said: They diagnosed non epileptic seizures over a 6 day hospital stay in Sept of 2020. Video EEG was used along with ruling out other possible causes. I also have functional dystonia (and organic dystonia) and what neurology thinks is functional foreign accent syndrome. I did a 9 month intensive out patient program for the seizures and I now (finally) have specialized PT for functional Dystonia. Improving now that PoTS is diagnosed and under better control. I also had bilateral spastic entropion (lower lids flip under) and bletherospasms. I had bletheroplasty for the entropion. Other areas of the body are impacted as well (GI and GU). I can tell you that my PT (who is amazing and has years of experience with patients with FND) is a firm believer that dysautonomia is a driver for FND. If you can’t get the dysautonomia under control you will only be managing symptoms of the FND. You will not be able to treat it. That has absolutely been the case for me. Quote Link to comment Share on other sites More sharing options...
little_blue_jay Posted December 25, 2023 Report Share Posted December 25, 2023 20 minutes ago, BaPon said: They diagnosed non epileptic seizures over a 6 day hospital stay in Sept of 2020. Video EEG was used along with ruling out other possible causes. I also have functional dystonia (and organic dystonia) and what neurology thinks is functional foreign accent syndrome. I did a 9 month intensive out patient program for the seizures and I now (finally) have specialized PT for functional Dystonia. Improving now that PoTS is diagnosed and under better control. I also had bilateral spastic entropion (lower lids flip under) and bletherospasms. I had bletheroplasty for the entropion. Other areas of the body are impacted as well (GI and GU). Oh my, you've had a hard road! I'm so sorry you're having so many issues 🫠 Quote Link to comment Share on other sites More sharing options...
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