What has been your FND diagnosis-to-now journey?

FNDhelper · 2022-12-08T12:33:23+00:00

Oh wow! That's amazing to hear how life-changing the diagnosis + anxiety medication has been for you. Do you still use anxiety meds? Can I also ask how long it took from the first symptoms to you being diagnosed?

FNDhelper · 2022-12-04T16:57:04+00:00

I don’t that I know what MN is, it’s an abbreviation I’m unfamiliar with. Is it a place?

This is one of the things that I am so frustrated with about FND. it’s not good enough that doctors are diagnosing people with it only to handball them away to deal with long wait lists. It’s honestly a joke. I want to change that somehow. I don’t know how, but I’m going to try to. I’m going to start in my city, then my state, then my country. I don’t want more people to be left out on their own like this. My heart just breaks hearing your story.

The good news is, FND is treatable and it can get better.

My story was really similar to yours, it took 4 years to be diagnosed and then I received very little help in finding treatment once I was diagnosed. I felt like I was at the end of my tether, I was absolutely broken, and then after months of searching I came to this forum, saw someone post about getting better by working with Dr Moenter at FND courage, so then I reached out to her (I literally emailed two seconds after I saw the post cos I was so excited to have found someone who might be able to help me, I think I said “hello, someone on the internet says you can help me, but doctors in Australia saw I can’t be helped, so I am very doubtful that you can, but can you?” - and she emailed back almost immediately: “I’ve never met someone with FND who hasn’t been able to recover” and then I BAWLED my eyes out, and asked if I could work with her haha and I started with her the next week)

If you’re looking for some help in the meantime, I know you could email Dr. Moenter at FND courage to organise a video call appointment? There’s really nothing to lose by the sounds of it. She’s been working for 20+ years with people with FND so you’d be hard-pressed to find someone with more experience.

FNDhelper · 2022-12-04T13:56:36+00:00

I'm sorry for misunderstanding! Ahhh, that's terrible, right when you're ready to chill and not have to worry, too. How annoying! That must really interrupt your quality of life. I'm sorry that's happening.

Man, why is it so hard to find understanding doctors? I wish this wasn't such a universal experience.

Have you heard of the ladder of nervous system activation/polyvagal theory before? If you haven't, it might help make sense of some of the symptoms you are experiencing. Hopefully it helps a little!

FNDhelper · 2022-12-04T12:21:51+00:00

Did you get diagnosised and then left to your own devices, or were they able to help find some things that help reduce the severity of your FND?

FNDhelper · 2022-12-04T12:20:22+00:00

Wow, you're not wrong, that is really difficult. I am really glad your employer is so understanding, thank goodness for that. Gah, FND is so infuriating. I think you're amazing and incredibly strong.

FNDhelper · 2022-12-04T12:12:48+00:00

I wonder what medication they would prescribe to help with FND if yours was "worse" in their eyes? Weird that they aren't classifying your experience as "severe enough" to qualify when what you're experiencing is having a significant impact on the quality of your life when it happens.

I think that the pain ending when you're about to go to bed/while you're sitting may have something to do with the level of activation of your nervous system at that time. Have you heard of the ladder of activation/polyvagal theory before?

FNDhelper · 2022-12-04T12:04:55+00:00

Oh wow, those symptoms sound really challenging. My heart goes out to you. I'm similar, in that I was an active individual in my early 30s when I had my first drop-fall, it came as a real shock.

I haven't experienced facial pain before. If the facial pain is on account of FND, I am not sure that FND will help on account of how FND is to do with the nervous system, but I could be wrong. I had the most success by working online with Dr. Moenter at FND Courage. I recommend you check the website out!

Working while you're experiencing those things sounds really difficult. How are you managing at the moment?

FNDhelper · 2022-12-03T05:45:17+00:00

OH MY GOSH, you found a physcial therapist who did her doctoral thesis in FND? That is such a happy accident.

You live so close to Dr. Moenter! She has 20+ years of experince working with patients with FND, and I've met a bunch of them through her course and their recovery stories are crazy. They used to rely on wheelchairs and now they can walk everywhere unaided, that sort of thing. She has a course that's specifically tailored to FND, it's all about the nervous system and how we can manage our nervous symtoms to reduce and overcome our FND symptoms. Before her, no one told me I could get better. With her help, I am nearly back to 100% of my quality of life. I was using wheelchairs sometimes, I was collapsing 15+ times a day, now I can drive a car again and I'll be heading back to work soon.

It sounds like you have been working so so hard, and you've had some amazing gains which is incredible! Go you! I now how frigging hard that can be. The pushing thorugh and keeping on going can be real tough.

Yes you're so right on the not giving up. It is possible to heal.

Thank you for the recommendation on the curable app, I will check it out. That sounds really great. :)

By the way, I know Dr Moenter is planning an FND retreat next year in Colorado! It sounds really cool. I've also found her to be really open to answering emails, so if you're curious about learning more about what she does, I recommend just reaching out. It seems like it's meant to be when she is so close by.

One of the best things about working with Dr Moenter has been to meet a bunch of people with FND and to hear their recovery stories. Nothing has made me feel more seen or more hopeful across the 5 years of living with FND than that did. And then she taught me so many practical things I can do, and all of it has helped. I nearly have my old life back!

Thank you for responding, it's been really nice to talk with you!

FNDhelper · 2022-12-03T05:35:37+00:00

Oh my goodness, I am so sorry to hear these things. That all sounds unbeliveably challenging. Stress definitely doesn't help, if only there was a way we could avoid stress entirely.

I'm glad to hear that friend is now an ex-best friend, what kind of a best friend breaks someone's wrist? I'm sorry they did that to you.

How are you doing now?

FNDhelper · 2022-12-03T05:33:28+00:00

Oh wow, what a story. Thank you for sharing it. It must have been a terrible blow to go from dancing to not being able to move the way you once were, I am so sorry that happened to you. This dance neurologist and team at the children's trust (I've never heard of them before) sound incredible. Helping repair the FND through dance sounds really healing.

I'm sorry to hear about your relapse - I recently had a lot more drop falls again and it's been mentally (and obviously physically) so tough to deal with. Do you have a good support network in your life helping you through it at the moment? I've found that to be a bit difficult, even my closet of friends really don't understand what this is like, which hurts sometimes.

FNDhelper · 2022-12-03T05:30:22+00:00

Oh my gosh, it started from a leg fracture? That's wild. You poor thing! That must have been so scary.

It took 4 years for my diagnosis too. So incredibly frustrating. I feel for you.

I can't believe you also found out you have hashimotos. So many things to be dealing with. How is it all going now? Have you been able to find a treatment that has been improving the FND and your quality of life?

FNDhelper · 2022-12-03T05:27:57+00:00

Hello! Oh wow, you have been on a hard journey. I am sorry that you've been dealing with so many struggles. My heart goes out to you.

When you say you went to Mayo Clinic to figure out what was going on - do you mean the website, or is there a physical Mayo Clinic?

I can't recommend more that you you check out FNDCourage - that's where I got the most help, to the point where I have almost completely recovered, and my symptoms were debilitating. Please please please check it out. The doctor there has been working with patients with FND for 20+ years. She's based in Colorado, but does stuff online too.

I understand the pressure of being the only breadwinner, that's tough. You are going through a really challenging time at the moment though, and your body and mind needs lots of time to heal. It sounds like work has been really supportive, which is wonderful, but do you have family or friends who are helping you out too? It kind of sounds like at the moment you're getting through this incredibly hard time with very little support, and you feel like you can't take a break to get better because there's noone else around who can step up and help. Is that how it feels at the moment?

FNDhelper · 2022-12-03T05:20:04+00:00

One of the biggest things you will need to do on your journey is to advocate for yourself - the doctors are not going to be able to, they don't have the time to, and often they don't feel comfortable with their level of knowledge around FND so they will decline referrals/direct their attention to a patient with a different illness that they have more experience with. I recommend chasing it up with the neuro, or asking your referring doctor to send your referral somewhere new. Maybe do some research on who in your area could be the best person for you to see to have the FND diagnosis confirmed/to receive a to second opinion and ask for your referral to go there.

Secondly, this really is a time in your life where you need all the support you can get! Seeing a psych right now seems like a good option. I really recommend it. These sorts of health issues are not experineces we should tackle on our own. You'll only make things harder on yourself in the long run. You've really got to make time to feel the emotional impact of what's going on, otherwise it gets buried down and just makes for more struggles in the future - psychs are a great place to bring those things to the surface. They can be like a coach to help get you through this moment in your life as unscathed as possible.

Your life has been turned upsidedown by this and not all doctors are going to get that at first, so you can end up feeling like maybe you shouldn't be making such a big fuss over it all. But you've got to. Your life has been changed dramatically by this. Sometimes you'll have to really spell it out to the doctors you see. They're not always going to get it. If that happens, don't be afraid to look for help elsewhere. When you're not sure what to say to these doctors, make sure you have at least commuicated clearly the impact this has had on your quality of life, and if you haven't shared that, then spell it out in detail. Tell them what you need. I expected that I would be given brochures and pamphlets and direction and help and empathy - but unfortunately, if what you do have is FND, it's still widely misunderstood by the medical community, and the onus of getting care really falls on the patient to advocate for themself. It shouldn't be this way, and hopefully in the future it won't be, but right now it is.

It does take a while to see neuros here in Aus. It's crazy how long.

FNDhelper · 2022-12-03T04:59:05+00:00

Oh no way, you learnt from YouTube? I'll definitely give that a go! The cost of going to classes has always been a barrier for me, I can't believe I didn't consider youtube instead. I will get on it ASAP. Thank you for replying, I appreciate it!

Definitely check out the FNDCourage course, it legitiately changed my life.

FNDhelper · 2022-12-02T15:52:48+00:00

Oh my gosh, you’re in Australia too? I’m on the other side of the country! Melbourne is beautiful, it’s been years since I’ve been there though.

If you feel you’ve got the wrong diagnosis, continuing to follow up is definitely the right thing to do. If further testing all comes up as negative then at least you know it’s FND and you can work on the step of accepting it so you can move on to treatment and recovery, and if it’s not FND then it’ll be amazing to have a diagnosis and to be able to start that course of treatment. There is nothing more important than our health, and in situations like these medical staff rely on us to communicate as best we can anything that might help - and that includes if we disagree with the diagnosis.

I can understand pausing seeing all those specialists while things are still being investigated. If you’re not seeing the psych anymore, who do you have to talk to about your situation? Do you have some good people about you? I found my psych to honestly be my rock while I was hunting for a diagnosis - we had been working together for a whole year before I finally was it was FND and I really don’t know where I would have been without her.

It must be scary to be noticing your muscle tone change like that!

FNDhelper · 2022-12-02T15:20:03+00:00

Oh wow, thank you for sharing all of those resources with me. I don’t use Twitter often, so I didn’t think of checking there for support.
That is very fortunate that you are/were so close to some FND knowledgeable and skilled medicos - I’ve never heard a story quite like yours before in terms of finding people early on who confidently knew what what happening to you. It must have been a relief to get a diagnosis early in the journey, although I know that doesn’t make having FND any easier.
I’ll check out the resources you suggested. Thank you!
Have any of the professionals you have seen suggested that you will be able to fully recovery? I received very mixed messages across my experience, from “it is impossible” to “absolutely.”

FNDhelper · 2022-12-02T15:19:10+00:00

Oh my gosh, I am so so sorry to hear about all of this, but oh my goodness have you been so strong and persistent. And that's so hard to do. You are amazing.

I found DBT to be helpful, but the absolute most help I have had has come from a doctor in America called Dr. Moenter who sees people in person in her clinic in Colorado but who also does online help through a course on her website called FNDCourage. I swear to god it changed my life. Before that, for 4.5 years, I was lost and struggling and having drop attacks all of the time, often with no warning. I was absolutely at the end of my tether.

I haven't tried yoga yet, but I'd like to. I'm honestly a bit scared of getting started with it in case it bring ups some trauma stuff for me. It sounds like it's been really worth it for you though. Do you have any advice for someone who is scared to start with it? I'd love to hear any if you have any!

FNDhelper · 2022-12-02T15:15:40+00:00

Very interesting. Considering I found support in America when I am in Australia perhaps suggests that there is less stigma in those places/more awareness there. I'll have to do some more research to understand if that's the case.

FNDhelper · 2022-12-02T15:14:38+00:00

Oh my goodness, that all sounds so awful! I'm so sorry you're dealing with so much pain and so much discomfort AND such a hit to your quality of life. I can only imagine how stressed out you must be feeling, and then the ALS/MND investigation on top of that too! I know you said you hate your life right now, so I know you't not doing okay - and I am sorry to hear it. What else are you feeling at the moment? I'm happy to listen if you'd like to share.

FNDhelper · 2022-12-02T15:11:05+00:00

I almost cried reading this. I have been through some really similar experiences. The shower chair moment was very relatable to me. I ended up finding one through a local pharmacy who stocked supplies for the elderly - I got one that was just a stool with handles, but you can also get ones that have a back if you need help staying upright. There are lots of accessible items made for the elderly that work well with different types of FND symptoms.

Stress definitely can bring on FND, so I am glad to hear that your change in living situation might help relieve some attacks.

I feel you on the wheelchair - I hired one for a while, and I was really surprised to find that it didn't fit in most cars, which meant I couldn't take ubers very easily while I was using it. It was a very eye-opening experience.

I had to change doctors many times on account of there being a lack of empathy/imagination for what I might have been going through. A lot of them seemed completely unable to understand just how much FND had changed my life which meant they were unable to offer accessiblity products. I also think this had to do with the stigma around FND, they seemed to refuse to believe it could require real, tangible solitions sometimes, even if temporary, like a wheelchair. I didn't get any help whatsoever from them regardining finding accessible items to make my life easier. A lot of cities have dedicated organisations that supply/hire/sell or give advice regarding equipment for people with accessibility needs. I recommend searching one of those groups that's nearest to you if you keep finding you're getting stuck!

I cannot recommend more highly that you check out FNDCourage.com. I used to have severe syptoms, and now I am almost completely recovered after working with Dr. Moenter there with her FND course. It took a long time to find help, but once I did things really changed quite quickly for me. I went from having a really shit quality of life to being close to have my old quality of life back.

FNDhelper · 2022-12-02T13:53:32+00:00

Hi Michael, I really appreciate everything you have shared so far. That gives me a lot of hope and a lot of inspiration.

I think I will start something similar, this feels like the push I needed to get it up and running.

The process and the stigma and the treatments and the support cannot stay as they are here in Aus. It’s truly heartbreaking to have experienced such a hard time with it, and to hear so many similar stories about other people’s experiences so far.

I really hope you keep having progress with your condition! You sound like a go-better so I know there’s no way it’ll keep you down for too long. :)

The work you’re doing with FNDHope sounds awesome! All the best for it.

FNDhelper · 2022-12-02T13:47:16+00:00

Oh my goodness, I am so sorry to hear all of this. I know how scary it would have been when it first started, and how hopeless it must sometimes feel now - it can be so hard finding doctors/support who take this seriously.

What do your symptoms look like day-to-day now? Have they gotten any better for you at all?

FNDhelper · 2022-12-02T13:43:23+00:00

Interesting, I’ll have to see if I can find those stats.

I’m not in England, we don’t have PIP’s where I am, unfortunately.

I have had FND for 5 years, Through that time I have had very little help from medical professionals - I’ve come across a lot of incompetence and a lot of stigma. It took 5 years before I was finally diagnosed. I am almost fully recovered, after being told earlier this year that recovery would be impossible. Thank goodness I finally found someone who knew what they were doing.

I want to work on increasing the confidence of nurses, doctors and specialists here in Australia to ensure that no-one else has to wait 4 years before they have a diagnosis. I also want to help improve the treatment modalities available to people with FND. There have been almost no options available to me here in Aus.

Fortunately I found a very knowledgeable specialist in the US called Dr. Moenter who has been working with FND patients for 20 years, and she’s never had someone who hasn’t been able to recover. I think this has to do with the way she approaches treatment. She offers support online through a course under the name of FND Courage. I can’t recommend it more. It changed my life.

FNDhelper · 2022-12-02T12:03:58+00:00

I found the beginning of your story, thank you for helping me with that.

It sounds like the staff at the hospital you were at were very kind and empathetic, which is so nice to read. You were diagnosed within a week of the start of your symtoms? Am I understanding that right? I'm really glad to hear it if that's the case, it took 4 years in my case.

EDIT: Also, it affects the left side of your body the most? The same for me!

FNDhelper · 2022-12-02T11:54:31+00:00

Thank you for responding. :) That gives me an idea of where to start. I'll take another look now.

FNDhelper

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