fnd since may 2022: my FND came on... - Functional Neurol...

Functional Neurological Disorder - FND Hope

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fnd since may 2022

Loulou17_10 profile image
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my FND came on after the birth of my daughter. Started with vertigo, balance issues, fleeting paralysis until July when my full body went into paralysis and continued to do so for weeks. In and out of paralysis. Was admitted into the hospital and since then I’ve had almost every symptom you can get it seems like. There are only a few I have not experienced. I just received my diagnosis at the FND clinic in November. Currently working with physical therapist and CBT therapy. I retained my medical marijuana card as i have been experimenting with as many things as possible but thc seems to get me out of paralysis or really any of my symptoms. Unfortunately when the affects wear off I’m back to where I started if not worse but until I can get myself into remission I’m not going to let fnd paralysis, limb weakness or any of my other symptoms pass my life on by.

thc seems to be a very temporary fix but i wanted to let others know bc it has helped give me back some of my life. Not a cure all but if anything getting me out of paralysis has helped my mental state. I can run around with my kids and be a mom again. Hope this helps someone.

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Loulou17_10
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WesleyBuck profile image
WesleyBuck

It has been a life saver for me as well. It may not help all my symptoms, but it makes the ones it can’t a little more bearable. For me, depending on my state, I may or may not get “high”, but it’s pretty consistent in the relief it brings. Medical marijuana, LDN and Protryptaline are what have helped me the most.

Sleepybunny profile image
Sleepybunny

Hi,

Just wondered if your vitamin B12 levels had been checked.

I was diagnosed with FND and MUPS (medically unexplained symptoms) but the symptoms eventually turned out to due to B12 deficiency.

I had many neurological symptoms.

Vertigo, balance issues and paralysis can be found on lists of B12 deficiency symptoms.

Two useful B12 books

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper started PAS (Pernicious Anaemia Society), a UK based charity.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Has lots of case studies.

Some B12 related websites

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has some overseas members.

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

Lots of info about B12 deficiency on the Pernicious Anaemia Society forum on Health Unlocked.

I'm not a health professional.

Hello my friend,

Curious if you have checked out for dystonia. It causes more than just motor function loss, I say that because I have it.

It seems very few Dr's even know about it. At least from what I have seen. The worst part is, it isn't hard to test for. And the meds or the surgery to help make rhe symptoms go away, is great.

Look up dystonia and talk to your Dr to see if you can get a trial run of Ldopa or artane. Both meds work for me, but because Dr's didn't help me or treat me til now after nearly 2 years of symptoms. My dystonia is so bad I have to get surgery. DBS surgery.

With that, don't let a Dr tell you that you have FND before doing ALL the tests. I strongly advice that. Because, if I didn't question my symptoms day in and day out, I'd probably be dead due to my entire body seizing up randomly and getting badly hurt.

I said it before and I will say it again. FND may be real, but for patients that have had symptoms for extremely long lengths of time, FND is a get out of fail free card. I hate FND to my core, simply due to how most Dr's are beyond incompatint to even know what it is and how it works. They use FND due to their lack of wanting to think and help a patient.

Best,

Matt

Brokendeer profile image
Brokendeer

Hi clearly you have some things which work for you for now- but long term Marijuana use is dangerous for your fertility and health in general. Having a baby can really mess up your hormones and sometimes not level out for years afterwards.

It is just a suggestion, but I would recommend you get checked out by an Endocrinologist, they cover all sorts of hormone issues including Thyroid - some Thyroid conditions can affect the muscles function/energy levels/digestion and clarity of thought too.

Look for the calm in the Storm!

Jenradmo profile image
Jenradmo

This is refreshing to see not only a post recently, but also somebody that has had a child and their body has done it more regularly. I’m not gonna lie because I have ADHD. I have always self medicated with cannabis. I stop smoking a year ago tobacco and went to Vibes and I have had spliffs in the evening. But I try and control it with a THC vape. I do find with the correct strain of THC, I am calmer and more relaxed, but in the last couple of days, all of these symptoms of happened to the extreme and now in my legs with muscle twitching. And every time I google it, it says I’m having a mini seizures. I am terrified of gaining epilepsy or having a proper seizure. I am a single mum of a child with additional needs and I have no one else at home or no neighbours. I’m terrified of something happening to me. The doctor has no answers please can somebody please enlighten me what’s going on with me. I must be the only person on this forum that does not get migraines headaches. But I do suffer with my neck and shoulders a lot.

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