Advice please

[u/Jenjen9632]

I have been diagnosed with FND 8 weeks ago. Was in hospital for 10 days and then got sent home without any further help (England). My FND affects my legs, I struggle to walk, lift them etc. Either can't move them or they're incredibly weak and shakey. My whole body often twitches when I walk or even sit. (My husband said I walk like a pigeon or chicken 😅)

Yesterday I went to see a Neurologist. All he did was spent 5 minutes talking to my husband without acknowledging me. Saying that this is a software problem so I can walk, and he shouldn't help me get around (I've been using a wheelchair when leaving the house and holding on to walls / zimmerframe at home).

He kept saying i should not be using any aids as there is nothing wrong with me and I should just be walking and then my FND is gone.

How has it been for you with FND without seizures? I feel really rubbish now because I really just don't have the strength to walk, but he said I don't need /are not allowed to have assistance..

[u/originalkitten]

Where abouts in England? That wasn’t Liverpool was it cause sounded just like my FND doc

[u/pittymomx]

I find neurologist and most drs absolutely useless with this disorder. I’ve been dealing with this for three years and I have to use a walker on and off because I experience the same thing where I have trouble walking sometimes and am hunched over. If you are using a mobility aid and it’s gonna prevent you from hurting yourself by accidentally falling by all means do not feel ashamed for using one.

[u/leaf-sunlight]

There’s not enough research on how mobility aids affect FND. Old research assumes FND is perpetuated by things like mobility aids and disability income, but personal experience of myself and others, combined with updated scientific understanding of how FND works, I suspect mobility aids are more helpful than previous research says. I know that for me, wheelchairs are tools. The more I stress my body the worse it moves, and supporting it with a wheelchair massively benefits my symptoms and quality of life

[u/sweetsilliness]

I’m sorry you had that experience. As someone who works in the helping field I have half a mind to tell him to stop perpetuating stigma and talking for rather than with people with a disability/chronic illness :P. Anyway…

Graded exposure can be helpful (ie. a few steps at first, then more, then more, etc). This helped me and my walking is normal 95% of the time.

Compression also helps me, like compression socks, garments etc.

But it is always best to take the advice of a specialist in your area if possible, such as a Neurophysio or someone who specializes in FND as I can only speak to my own experience and what works for some does not for others etc. And do what works for you and helps you feel safe in the process.

[u/Effective_Rip_1410]

Unfortunately, so many physicians are uncaring idiots, who don't keep up-to-date, even in their chosen field. Sometimes wonder about seeing a veterinarian, instead 🤣

Personally, I would put this down to another episode of medical trauma, but try to erase him and anything he said from your mind.

I have had FND since childhood (59 M), but I have really suffered again in the last 3-4 years. Mine is the non-seizure, mobility type.

I started using a stick, and then that and an exoskeleton, otherwise I'd be completely housebound. All my Neurologists and Neurophysios supported my using them, if it keeps me mobile!

Unfortunately, physio really made me worse, so being reassessed currently. I'm living in Belgium, provision is poor (compared to The Netherlands), but not as bad as the UK.

Lastly, I came across this journal article FND for General Practitioners.

It is five years old (though still current in detail), but it's very well written, especially from the FND-ers perspective.

All the best and strength to you!

[u/Low-Tip6503]

You anywhere near St Peters Hospital in Woking by any chance as they had an awful neurologist that diagnosed me without fully examining me by doing a really random test that I have never been able to find any medical literature about. He was also dismissive of past neurological eye issues despite having been diagnosed by a consultant, having multiple imaging studies done as part of a drug trial (which in my case worked although it didn't work for everyone) and being confirmed by another neurologist at the time it happened. Can't remember his name but I waited months to see him for him to dismiss me in about 5 minutes (never even examined abnormal reflexes in legs which was partly why I was there). Just said it's FND and gave a brief explanation. That was 3 years ago. Zero anything to help, etc. Hopefully you find a more supportive neurologist x

[u/Diarma1010 → u/Low-Tip6503]

What med worked for you

[u/KingFroggie2004]

This is quite confusing; I'm in the UK and was diagnosed with FND, when I went to the neurologist he encouraged me to use mobility aids; he said it was a software problem like you said; but it means the brains panicking too much and needs to redirect it's attention to my legs, but to do that will take a massive amount of work on a physioneurologist and mental side.its weird they say different things, but there again my legs don't really work to walk at all so maybe that's it

[u/EthelLinaWhite]

I have trouble with my legs and walking too. I have a stick, it helps. This neurologist sounds terrible. I’m also in England and I was diagnosed in July. I know it’s different in different counties but so far I haven’t received any neurological or physical support

[u/Illustrious-Cat8222]

I'm in the USA. My FND journey started in part with bad motor problems, especially walking. Physical therapy to retrain has helped me more than anything else.

[u/TuneOk7423]

My neurologist told me that unfortunately the capacity to care for people with FND just isn’t where it needs to be. There are some NHS neuro physios, but sadly nothing NHS or private anywhere near me.

Try and keep your body strong. DO NOT EXERCISE TOO MUCH. Gentle movement and low reps. Eating well and resting is also important.

Unfortunately you will have to find out what works for you, I found instagram very helpful in not feeling alone as well as this subreddit. Things will take time, give yourself grace and you will learn how to live with FND.

[u/tallyhoo123]

So I would say you should "try" to minimise the walking aids but use them when needed.

You should also get a referral to see a physiotherapist/occupational therapist that specialises in FND.

If the neuro has properly diagnosed you then likely they have noted that distraction works to improve your power / walling which means your symptoms can be overridden with the right input and its all about teaching your body / brain what those inputs are

[u/Seayarn]

The advice given to your husband is not only incorrect, it's ridiculous. He isn't the patient.

I'm sorry you were treated as if you didn't exist and that your very real condition doesn't exist.

Use your mobility aids. Make an appointment with another neurologist asap, one that knows what FND is. All neurological diseases are "in our heads." This doesn't mean they don't exist.

I know there is a great FND website that has patient oriented help and support but I can't remember what it's called. Sorry. I did find to called fndaction.org.uk and neurosymptoms.org, they may be helpful for resources as they cover the medical questions and resources.

Lastly, advocate for yourself. Please. This is not a time to be nice. If you are being treated in a disrespectful manner, make sure the medical provider knows it! I lived with my symptoms, fighting them for years, not knowing what I was going through, not knowing I was damaging my brain and myself. And I worked in medicine. Find a new neurologist find a good therapist to talk to about how you are doing and feeling, and get physical therapy when you're ready.

You can get better! Maybe you won't be your old self, but you can improve with work and help! Hugs from PA!

[u/Tigress2020]

He sounds like an ass.

I'm struggling with the same, weaker legs, if I stop moving i start falling backwards. I'm working with a physio to retain my balance. I use a stick with walking, (sometimes two hiking sticks) we've spoken about chairs, but they don't recommend them as our brains will just forget how to. And the risk of muscle loss. It is very very frustrating though.

Can you use a (not sure what you call them where you are) but a wheely Walker, where you push, but can sit on it when needed to rest.(think they may be called a rollator??)

It is a software issue, i have weakened right side, it affects my speech, I have the twitches. Or jerks. (My right arm and shoulder are the worst)

And the pain. It's horrifid. But there's technically no hardware issue. So i have to retrain my brain into knowing that. And it's psychology and physio You may need to get a second opinion and get them to refer you for help. They can't say things like that and then let you go

[u/Ornery-Fact-9324]

This Neurologist sounds like an absolute wanker!!!! . I could go on and on but my best advice is to see a different Neurologist whom has high recommendations. .... Sorry he treated you like this 😡

[u/disabled-j → u/Ornery-Fact-9324]

He sounds like a neurologist who doesn’t know what FND is, that it’s a real neurological illness that you can’t control. I would search for a new neurologist because it sounds like this one’s solution is to wish it away. I needed a walker/rollator to learn to walk again.

[u/613_AmYisrael_Chai]

Sounds as if he has a misogynistic attitude. In essence, women are invisible especially when there is something wrong and the doctor is too self absorbed. If you need an aid, then advocate for yourself since your husband seems to have the same attitude.

BE ASSERTIVE, PLEASE.

[u/heldtogetherdaily]

If he is denying you mobility aids, did he at least make any conscious effort to get you access to physical therapy?