Hi, I’m newly diagnosed with FND in July. I’ve had neurological problems for 20 years on and off and was thought to have MS up until the FND diagnosis. I have been having leg weakness since March 2023 initially my legs were giving out, my balance was off as well as my spatial awareness. Since September I’m feeling much better I’ve been cane free however my legs are still weak daily feeling as though I just ran 5 miles. I usually either have symptoms or don’t but I’ve been stuck in this limbo for months. Has anyone had this where you are better than you were but still experiencing slight symptoms?
Leg Weakness : Hi, I’m newly diagnosed... - Functional Neurol...
Leg Weakness
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CrystalBeach1
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That's interesting - how did they diagnose you with MS? Why did they change their minds? I was diagnosed with Parkinson's originally then it was changed to FND. My symptoms were really bad at first - a severe head tremor, dystonia all down the left side and collapsing episodes where I couldn't move for days (which they called "weakness", lol!). That lasted a couple of years, but for the four years since then my symptoms have improved somewhat, except for the dystonia. I'm now really careful to listen to my body and not push myself too hard (which is basically the polar opposite of what my specialist was telling me to do, which I think is why my symptoms were so bad for so long).
Let me clarify I was not diagnosed with MS that’s what the doctors always initially thought. However they tell me all my test are normal and it’s FND. I’m 40 and have had symptoms on and off since I was 20. I used to have leg tremors, head shaking and speech problems, only since 2020 have I experienced the leg weakness. Usually I’m either symptomatic or totally normal however this time I feel stuck at 85%
Hi CrystalBeach1,
They are not meant to make the FND dx based on normal results alone so if they didn't give you a clear rationale for your dx I'd request one asap. All those symptoms could be from migraine so I'd also request a referral to a migraine specialist. Horrid to be stuck and I hope you can get the answers you need to make more progress.
Hi! They said I had a positive Hoover sign which is how I received the diagnosis. I used to get a lot of migraines in my 20’s but rarely get them now. Yes I agree I do feel they jump to the FND diagnosis quickly
CrystalBeach1 Hmm, according to DSM there aren't any tests for FND and I know the Hoovers Sign is being done on people who don't claim to have weakness in that area so I've been iffy about it for a while, now (IE even before I read the DSM stuff).
Have you ever had genetic testing like a neurological panel to look for mutations associated with things like Charcot-Marie-Tooth disease or Episodic Ataxia? Or how about autoimmune testing? There are a surprising number of autoantibodies that can cause neurological symptoms.I fund most doctors are too ignorant or lazy to go beyond the obvious testing. If they don't find evidence of something common, like MS, they default to FND because it's easier (and cheaper for insurance) to say it's all in our heads.
Hi I don’t think I’ve had any genetic testing done or autoimmune testing if it’s not in the regular blood panel. Yes I do not fully believe in the FND diagnosis but am working on accepting it. I did have a positive Hoover sign and that was how they diagnosed me.
I personally think Hoovers Sign is a load of crap. You can have a positive Hoovers Sign and still have an actual medical condition. It only applies to very specific types of weakness.
Really I kind of felt that way as did my family. I do have spots on my brain on my MRI but they tell me they are normal. Such a hard position to be in my legs aren’t bad enough for the neuron Pt but is still disrupting my life.
I hear ya. So frustrating. I did 12 weeks of pt for complete foot drop, lower leg weakness, muscle wasting. Then my insurance stopped paying for it because my PT said I was no longer improving.
Thank God none of my doctors put FND in my charts *yet* but multiple docs have hinted at it.
I did genetic testing on my own and found out I have a mutation associated with CMT2A. Which literally fits 100% of my current and past symptoms. But my neurologist was woefully ignorant of hereditary conditions so I am currently still undiagnosed.
We did do an autoimmune panel from Mayo clinic. I tested high positive for antibodies that cause neuromyotonia. Another neurological condition that would explain my constant muscle twitching. But the doctor fobbed it off as a false positive. I pushed the doctor to explain his reasoning for his opinion and he refused to give me an answer. So once again I had to advocate for myself. I found a lab online that let me self pay for a repeat of the test for those particular antibodies. I'm waiting for the results. If it's positive again I will find another doctor and demand follow up.
Yes, I would fight as hard as you can to avoid getting FND on your chart. When my diagnosis changed from Parkinson's to FND (actually "conversion disorder" because my doctor was a Freudian), I changed seemingly overnight to being a crazy, neurotic, hypochondriacal fake in the eyes of most medical "professionals", which made it ok for them to treat me appallingly.
That makes me so sad for you. I'm sorry.
If my antibodies test comes back normal I'm probably done with doctors.
My symptoms are manageable day to day. There's no treatment for CMT or neuromyotonia anyway. Just symptom management.
My only reason to go back to a doctor at this point is that the antibodies I tested high for are also associated with tumors and other malignancies. I'm not even sure a doctor would even follow up on that but it's a big worry in the back of my mind. 😞
Oh I absolutely understand that I’ve been treated poorly for 22 years by these doctors. I’ve had conversion disorder ruled out many times over the years and now they’ve renamed it and diagnosed me with it. It’s all very frustrating especially since I’m not getting better this time that’s new. I’ve also been diagnosed with RBD a sleep disorder very common in Parkinson patients
I'm so sorry - 22 years, that's awful. I've only had 5 years so far of this poor treatment and that's been bad enough. My only consolation is that some neurologists are now finally beginning to get it, and realize that we can't help it, and that we are really sick. Hopefully in the future they'll figure out how/why this is happening to us, and how to treat it successfully.
Oh my goodness I’m so sorry to hear about your situation. Yes it’s so hard to be taken seriously by these doctors. I’ve been fighting two decades and now I’m just too tired and can’t go to anymore doctors. No one seems to help and it’s just more upsetting than it’s worth.
Hi, I have leg weakness toobut also have fibromyalgia. I have put the leg weakness down to this. There are times I simply cannot walk. Constant rest is required and the best advice I can give is PACE yourself. Don't ever try to do too much or your body will let you know very quickly that you need time out. Good luck with managing your condition.
Thank you for the response. I have been pulling back and hoping that will help.
Good luck with everything!
Hi wow this so similar to where I am currently. It’s almost 10 years since I was diagnosed with FND. Mostly left left limp / weakness etc … I am now cane free mostly, except for big days out if there are crowds. Still need a wheelchair if I fly, but on the whole living a full life.
Yea pacing ….. but oh my it’s still so hard though. Like you, I’m now kind of neither have the awful relapse if / when I over do it! but then again I’m not where I’d like to be either. Yes we all hear about the ‘new’ normal, but I’m always hopeful too
I have recently started with a personal trainer, one who tailors our session to work with my capabilities. I was also very lucky to have amazing FND Neuro physio in London, that didn’t push me and helped me so much. It was just 2 separate weeks in total over the 10 years, but I learnt many techniques to help me to re set my movement.
Happy to chat more, if we can help each other out at all. Meanwhile keep pacing and keep moving!
Lucy in Brighton
Thank you for the response. Yes it’s very hard to find that balance. Trying to take advantage of the days you feel good but I feel I’m always paying for it.
Leg weakness and balance problems often go together, often including Calf Lock where your calf muscles hurt as you walk & don't seem to allow flex in your ankles (causing you to limp). Most common reason for this is the extra work your leg muscles are incorporating in order to keep you upright/balanced, and again, common with Dystonia where balance issues are often experienced. If you have historic back problems you will find this will exacerbate the problem, making it difficult to split the responsibility of that experienced to a single particular symptom (which it rarely is). Regular leg stretch exercises (as though getting ready for a run) are often very helpful. Perhaps difficult to do at first, but it gets easier with gentle practice.
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