Opinions on My FND Situation

[shali_queen]

Hi. So I was diagnosed with FND last year and was pretty much forgotten by the doctors after they diagnosed me (I developed more symptoms and refused to see me in office). My symptoms include gait problems, speech problems, tremoring - pretty much everything has, dystonia, or not being able to move certain parts of my body well. I have noticed I’m also very emotionally sensitive to certain situations. For example, someone scared me for fun, but my body could not handle it and I was feeling shocked and quiet for a good hour (never happened before). Or if I have a distressing dream that emotionally affects me I start tremoring in sleep and wake up because of the tremor and not the dream... I just want to ask, does anyone else feel like their emotions have elevated above their “normal” emotional state? I know mine has and I would like to know if others have had too. I feel so lost when I can’t control anything in my body sometimes.

I am way better than what I had started with last year and still trying to improve my health. I’m also sometimes worried because sometimes I fear there isn’t 100% recovery rate for everyone. I just want to be able to manage still live a decent life at this point.

Things I have tried since I do feel like I am pushed away from the medical system include: CBT, seeing a psychologist, exercise — couldn’t even do it before, got better over time, and finally naturopathy.

So my next question is if someone has tried naturopathy? I’m currently doing it. I think it has helped me (maybe it’s a placebo or if not I am taking what I can get).

I just want to try things. Planning to find ways to eliminate my anxiety levels too by facing my fears (like going on a scary ride and thinking toastmasters) as a way to emotionally learn how to get better. So I become accustomed and reduce chances of tremoring altogether.

I need to get even better because I know I can’t work because my condition is still unpredictable, it’s affecting my schooling and I had to switch to another program at university. Please just comment things you think may have helped? I’m willing to try things to move forward. Thanks.

[shali_queen]

You know whatever you said is so true. I never realised how hard it is until after the condition came to be. I had a car accident 6 months prior to the diagnosis. More psychological trauma than physical. But all I ever hear is that that happened too long ago to have caused my condition. If they don’t understand my problem, I don’t understand how they can claim it couldn’t be that. It’s so confusing. It’s nice to hear someone with similar situation I don’t feel so alone with it.

[Anne_Bonny]

I just wanted to pick up on your naturopathy/placebo queries. If you find a treatment that works, it isn't important whether it is placebo or not. The important thing is that you have found a treatment that works for you and that is only a good thing. I have tinnitus and mild hearing loss; I wear hearing aids and the tinnitus is greatly helped by it. It is a well known placebo effect and I am fully aware of that, but it doesn't matter that is does not treat the tinnitus, the important thing is that it helps me.

With respect to the unpredictability of symptoms, the best method I have found of dealing with it is to plan your life around the worst of it. You need to get yourself into the mindset that your worst days are your baseline and that is okay. First thing every morning and throughout the day you need to take stock of how you're feeling and figure out how much you can do on top of your baseline. If that is nothing then that is fine, it is after all your baseline and you can work with that. Anything extra you can do is a bonus. I don't find it helpful to think of good and bad days, but to go with a baseline and anything over that is a bonus.

Going through education isn't easy, but it is possible. Since my FND diagnosis, I finished by bachelors degree in chemistry and I am now in my second year of my PhD. It is completely possible. Make use of the holidays while you are in undergrad. They can be utilised as a brilliant recuperation tool if you are sensible about it.

[shali_queen in reply to Anne_Bonny]

Glad to know you doing your PHD. I want to do that too. And I think I have been doing the baseline thing, but I think more in a negative way because I feel like I have to think twice about it before I do anything, unlike before. I’ll try to do that though and accept it — positively of course. Your post encourages me. If you can study despite the difficulty so can I. Thanks for replying. It actually means a lot to me because I’m a student too.

[Momofson]

I think naturopathy is a good way to go. Have you been tested for autoimmune encephalitis? Or autoimmune autonomic neuropathies?

Did any doctor have your blood sent to test for all the autoimmune antibodies? This bloodwork can be sent to Mayo Clinic, they have discovered many of these antibodies and any doctor can have your blood sent there for testing. Extreme fear can be caused by having autoimmune encephalitis. Don’t be discouraged by doctors, they are missing a lot of illnesses and giving ghost diagnosis because they don’t know. All of a sudden so many people are diagnosed with FND...it’s ridiculous!

Has your thyroid been tested...including antibodies against your thyroid, like TG and TPO? All very important! Your thyroid can throw everything off!

[shali_queen in reply to Momofson]

I have been test for literally everything. Everything was normal including MRIs etc. but I will ask my doctor again to be clear. Do you know by chance how this is different from Parkinson’s? I had someone ask me that and I didn’t know the answer to it. I think it’s age, but I also know it is rare, but it is also possible to have it happen at a young age.

[Momofson in reply to shali_queen]

I don’t know about Parkinson but if you’ve had every test, they probably would of found it.

[MariaBanelli in reply to shali_queen]

FND is very different to Parkinson's but Parkison's can't be picked up on an MRI, so it is something a neurologist could miss. PET scans can sometimes, but not always pick up low levels of dopamine in the brain which is a sign of Parkinson's, other than that, Parkinson's is normally diagnosed by symptoms.

[Justdrea81]

Yes, I've had very good luck with naturapaths. The one I'm seeing currently put my on low dose naltrexone and all of my symptoms reduced by 70-80%. It has literally given me my life back. Modern medicine doesn't "believe" in LDN, but it's been amazing for me.

[shali_queen in reply to Justdrea81]

Allopathy doesn’t seem to help me at all. I have tried an antidepressant too and doesn’t work. Good to hear naturopath is also working for you. I will continue with mine as well.

[Momofson in reply to Justdrea81]

I’ve heard a lot of good things about LDN but as you said, most regular doctors will not prescribe it to you!

[Chingona]

I swear by the keto diet, it’s given me my life back. Also small amounts of THC with cbd helped me a lot last year. I haven’t been officially diagnosed with FND I’ve been seeing neurologists for a couple years now and it’s been thrown on the table. I have struggled with many neurological symptoms, but with keto I can drive and work, I did a triathlon last year for the first time and I’m training for my second triathlon.

[shali_queen in reply to Chingona]

Okay! have a lot of people saying Keto might help. If it’s helping you then I will try it too. I did try some dietary restrictions and felt like I was feeling better so maybe it’s just the thing.

[Chingona in reply to shali_queen]

I think it’s because the keto is a anti inflammatory diet and that why it helps.If you’re serious about it, I would get a blood monitor it takes a lot of guess work and wondering if you’re eating the right stuff. Good luck! And let me know how it goes if you decide to do it!

[moose1237]

I took my son (10 years old) to a chiropractor after the medical doctors did nothing. He is no longer using a walker and has no more seizures. So please look into alternatives. Good luck to you!

[shali_queen in reply to moose1237]

Okay! I’ll try the chiropractor too. I always have neck pain anyways so maybe it will help me too :).

[Chingona in reply to shali_queen]

I agree chiropractic adjustments have helped me too!

[Kittilyn]

After months of no real help from neurologists, I went to a great naturopath who did bloods & diagnosed Lyme & co-infections. I'm now on herbs & vits, & my FND symptoms have improved hugely over the last 2 months. I'm back at work. So yes, I'd recommend a naturopath, for sure. Good luck!

[Ashbutterfly]

I do lots of swimming and meditation in the water. That's the only thing that has helped me.

[Ccaldwell]

Have been working with a Naturopathic Doctor for about 6years. She is also a Social Worker so I get the added bonus of talk therapy when I need it. I see her once a month. This is the only doctor who has helped my symptoms. She is my primary health care professional.