FND after neurology appt please help!

New diagnosis and before diagnosis
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I had my appointment today with the neurologist and I am so emotional and I don’t think my family will understand.

After going through my symptoms which are as follows:

-right sided arm had and leg weakness
-bladder urgency and frequency (on tolterodone for this)
-balance issues
-accidents from balance issues
-memory problems including recall
-and some other small issues
-multiple a&e visits for right sided paralysis recent one being a couple weeks ago.

Back ground is that I have had 2 brain MRI’s not with contrast.

Anyway after going through medical history the neurologist said that she thinks it’s FND functional neurological disorder and dissociative disorder and that there’s no medication because it’s the fact that my brain is not talking to my body and that stress can cause this. She said that my brain MRI’s look fine.

She said to cross the T’s and dot the i’s she will consult with the consultant radiographer but my symptoms are not suggesting to her MS. And she’s confident it’s this dissociative disorder which can be caused by stress and that i should refer to IAPT’s to get talking therapies.

I said that my last a&e visit the dr didn’t get any response on my right sided leg reflex on my knee Achilles and toes. She said that having no reflex is not an issue and that some people just don’t.

After she did some tests she said i had right sided weakness and when she tried to elicit a knee reflex with the hammer my right leg didn’t respond. She kept hitting it between 10-15 times and got 1 response on the last attempt and said oh there it is it was just being stubborn. She also did 10-15 times on left knee and I had a response every time.

She gave me some web sights about FND and dissociative disorders said she would write to my gp after she had conferred with the radiographer. She also said that she could refer me to the FND clinic but all they would do is talking therapies. After that she said is there anything else I’d like to discuss like that was the end of the consultation.

I asked if she would be discharging me and she said she would review me in 6months. I then asked so you don’t have to do any scans on my spine and she then asked me have i not had one and i said no and she said oh ok i guess we should order one just to cross the T’s and dot the i’s (again!!!) but I’m sure that won’t show anything.

And that was the end of my appointment. I know not getting a diagnosis of MS is a good thing but i feel so defeated. I have had therapy numerous amounts of time. Talking therapies and CBT regarding my life and to be honest i am in the best health mentally i have ever been. But now i am so emotional because i feel if I hadn’t suggested the spinal MRI that would not have been done and i wanted to ask about the lumbar puncture but i already felt like an idiot sitting there and just wanted to leave and cry.

How the hell is talking therapy going to fix my leg weakness and no reflex!!!

My husband is just happy I don’t have an MS diagnosis which is great but what the hell is wrong with me.

I am now waiting for my spinal MRI now so I guess what I am asking is can you have a normal brain scan and then have legions on your spine?

Sorry for the long winded post but I guess I just needed to vent.

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Was one of the recommendations
https://www.neurosymptoms.org?

It’s the best resource I have found for explaining what FND is (a real thing) and what it isn’t (all in your head).

It’s a lot to take in, but FND for all its very real difficulties can potentially get better. MS can’t. To that extent, your husband is right.

So far so ‘could be worse’. Let’s see what the spinal scan shows. Whatever is the matter, it’s real. No one thinks you making this stuff up.

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Hello again Rens, thank you for the mutual ranting the other day. Was an enjoyable read.
I am a sorry to hear you have a negative experience again with this.
I do wonder why they are not doing contrast scans, they can be rather informative. Hopefully your spine check will help move things towards a feeling of resolution finally, sure must be horrible to have it dangling in the unknown for such a long time.
I had never actually heard of FND, so I went looking a little.
There does indeed seem to be an unfortunate trend some places to shift people into the “it’s all in your head” box and then pack you away somewhere out of sight, as gruesome as it seems to me. Symptoms looking plenty like MS so ruling it out extensively I would have thought to be a high priority task, especially given how much of a difference rapid proper treatment can make for long term symptoms.
I can read similarly to what Alison says though that it is indeed a real thing so even if it is actually that you should be able to get proper treatment somehow. More than MS, FND indeed seems possible to largely fix or at least make a lot better and more manageable with proper treatment (which it seems does actually include therapy but you’ve been on that particular ferriswheel plenty already I’m sure.)

I have definitely seen it written here aplenty by now that managing to get your medical care providers nudged in the right direction for proper diagnosis and treatment is rather a tedious and troublesome affair, so very good on you that you managed to raise your voice enough to at least get that spine checked as well. Problems with the leg and then no spine check sounds rather odd indeed, would seem an obvious place to check in my own experience at least even if it might not exactly give super clear results.

To answer your final question then, ultimately MS at least is highly individual a matter and I have seen plenty of people write here at least that they had nothing in the brain and were thus almost brushed off while the spine then snowed plenty of lesions and boom MS.
In my case it was the other way around. Brain has gotten massively roasted and only recently have I had anything happen on my spine at all.
It is as I like to say just throwing darts at a list of body parts, which one will we ruin today? Nerves are everything, it’s rather remarkable really how many peculiar tiny little things we suddenly cannot do if the right nerves don’t work well.
So well, I guess my usual endless blabbering boils down to that I think it definitely could still be MS and that it is definitely a good idea to have that spine checked. And I think they really should get that bloody contrast agent done too if you are currently feeling your symptoms changing or developing, as that is one thing that can be seen rather well sometimes with a contrast scan, given it is an MS attack causing it.
I hope it works out better for you, sure would be nice to finally have some feeling of things settling down.

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Hi Alison100

Thank you for that I appreciate it I guess I am just frustrated and needed to vent I have looked into FND and yes the symptoms are very similar to MS if not the same really.

I just wanted to say to make sure that it is 100% FND so there is no boggling feeling at the back of my mind.

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Hi Driath

I am not sure why they won’t do a contrast dye MRI but I have found when you ask “why” to any drs they think you’re questioning their knowledge and double down on not doing something. So I have stopped asking this question.

I am just glad I asked them about the spinal check I feel a bit better knowing that will be done (probably without contrast)

I think my problem is not with the diagnosis of FND which I will be happy with but with the constant frustration of the NHS not doing the job correctly. This is not the first time they have ignored symptoms of mine. The last time I ended up in hospital with a major kidney infection because my GP told me that the bloods I had done 2 weeks prior were perfectly normal. When I checked my results apparently my kidney function test was not normal and my CRP was sloghtly raised and they should have done more investigating and put me on antibiotics but they said everything was ok.

Same thing happened with my mum and the same hospital I am at. I did my research and realised she had respiratory failure 8mths before she passed but they wouldn’t listen to me. they found out she had respiratory failure 3months before she passed.

My daughter was diagnosed with underactive thyroid when she was 14 because I kept saying something was wrong and they finally did some blood test and found this but it was a chore to try and get that done.

So I guess I have a history of the nhs not listening and having to fight to get the smallest thing done.

As I said I would be happy with the FND diagnosis had the dr done all the tests and then come to this conclusion.

I guess I am just frustrated about people not doing their basic job. As I am someone who is very thorough while working and I like attention to detail. I learnt a saying recently “details matter” and I find it very apt when talking about health issues.

Thanks again for reading my ramblings

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I had the same symptoms as you I had am MRI of the brain and there were no lesions I was 38 and made to feel like I was a hypochondriac 6 months later I ended up going to St Thomases hospital after a DVT and the specialist decided on an MRI spine mostly out of curiosity I think, and I had over 11 spinal lesions from my neck to lower spine This was then followed by a positive lumbar puncture I have a clotting abnormality and Multiple sclerosis

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Hi Mully

thank you for replying. Now that the neuro has ordered the spinal MRI I am glad I spoke up but who knows how long that will take to come through because she only said she would do it as I was enquiring about it and she didn’t see the need to have one done as she is so determined that she’s right with the FND diagnosis.

As I said before I would be happy with that diagnosis as long as they had actually done all the checks.

I am not sure whether to pay for my own spinal MRI so that I can get the results sooner as I doubt my neuro put it as urgent.

But I do feel a bit better knowing that I am not being silly about my concerns.

Thank you so much for replying with your story. It crazy how many stories are similar with regards to unsatisfactory drs.

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Hi Rens, So sorry you’re going through all this You’re not being silly at all and it’s utterly dreadful that you have been treated the way you have My advice would always be to kick up a massive fuss (it works believe me) Contact your local hospital PALS and write an absolutely damning complaint about the consultant, How dismissive she has been how you feel utterly let down Don’t worry about what she may think if you have to see her again! Complain, complain and complain again Don’t care what anybody thinks of you If you feel she is using your mental health against you Then use it to your advantage !! Tell them the devastating impact it’s had on you because of her dismissive attitude towards someone she thinks is mentally ill, Remember to use the word ‘Discrimination’ in your complaint ( They’re terrified of that!) tell them you feel you’re being discriminated against because of past mental health issues and therefor not being taken seriously, Tell them if you’re not having a breakdown at the moment you soon will be I’m fantastic at complaining If you need any advice let me know

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In MS reflexes are more often hyper reflexes, short and quick.
Having no reflexes is possibly guiding your medical team away from MS.
That’s not to say there is no hyporeflex in MS it’s just less common AFAIK.