All in my head UPDATE

New diagnosis and before diagnosis
1

Morning all,

Sorry this is long but hope it might be helpful for some of you. So saw the neuro last night.

He confirmed that from the physical examination he doesn’t suspect MS, just as I expected really.

However, he has booked me in for more blood tests and another full spine and brain MRI. He said maybe a lumbar puncture would be a good idea as a precaution, but we decided between us to wait and see if the MRI/bloods are suggestive of anything that may need a LP.

Then he went on to talk about what he thinks this actually is…and yes…FND.

However… he explained really well what FND is, how devastating it can be and how it is a recognised “real” condition that needs proper investigation and treatment. The way he explained it was really helpful, as of course the first thing I did was argue about not being stressed. He said think of it like a computer software problem, you can take the hard drive apart and examine it carefully but you won’t be able to see whats wrong, the software is functioning properly and making your computer crash or go slow and its caused by possible a number of things and only by finding those causes and fixing them will your computer start to function properly again.

He was very reassuring in that he does not for one second think i am making this up or imagining the symptoms, he said the pain, the sensations, the dizzyness are all there, they are real, its just that FND causes the nervous system not to work properly because of something going wrong in the brain. The most likely cauase for me is the spinal surgeries I had, the 2nd one being pretty major, and the fact that I never recovered properly and live with chronic back pain and some disability because of it. However there may be also be other things from my past that I have just blocked out and thought I had dealt with that my brian is simply not coping with.

He gave me the name of website, neurosymptoms.org.uk which I looked at last night and things made a lot of sense. Any one who has suspected FND or gets dismissed with stress, I recommend you look at this site, it’s really insightful.

So for the moment he has taken me off Pregabalin and instead upped my Amiltryptaline and I will need to increase the dose weekly for a period of time. In the meantime I will have the MRI etc and if tests come back clear he will then set me on the path to treatment for FND which is a mixture Physcotherapy, further neuro support and appointments and more neuro physio.

I was very upset at first, I think of myself as a very in control person and its very scary that I have no control over what my brain is doing to my body, and also I’m scared of the stigma associated with this, people thinking i’m mad, malingering etc. But having slept on it, if it is FND I will go for every test and treatment they recommend as it is curable or at least made much more manageable, and i’m so sick of this thing I say bring it on, lets get it sorted.

So upshot is, MS unlikely, FND a strong possibility.

Feeling a bit more positive today, at least we are now properly on the way to getting help

Hope you all doing ok this morning.

Bunny xxxxx

2

Thank you for the update. It sounds like a thorough and thoughful and thought-provoking consultation, with some very interesting stuff on FND. I have come across that website before, and it is very clear and matter-of-fact about what FND is and what it isn’t. Well, hurrah for conditions that might get better. They will get a sensible person’s vote every time!

Alison

3

Hi Bunny,

I really think that is good news. There is hope at the end of the tunnel. I have just completed a 5 week course on mindfulness meditation and it was very good. Apparently it really helps people with issues were there is no obvious physical reason why they are feeling the way they are. If I were you I would give that a go.

I often wonder if people can have MS and FND to gether, were the MS has triggered of the FND. Could be why some people have loads of symptoms and very few symptoms. I have one spinal lesion which has not changed yet my spasticity has got worse.

You said from your physical exam he thought it wasnt MS - can I ask what he did to determine this - ie were your reflexes normal and did you have a negative babinski sign.

Onwards and upwards.

Take Care

Moyna xxx

4

Sorry that last post was mine I dont know why it went anon.

I read that website and found this which answered my question

"Things can become tricky when a patient has an underlying neurological disease (like multiple sclerosis) and they also have clear evidence of functional symptoms (like functional weakness). In some people, having a neurological disease can actually trigger the development of functional symptoms and something that a neurologist should always think about. This is often why investigations are performed even when clinically the diagnosis seems clear. Some people can have two diagnoses – one of a neurological disease and another of superimposed functional symptoms. For example, about 10% of people with dissociative seizures also have epilepsy (but 90% still do not).

You can read an article I wrote with colleagues about pitfalls in misdiagnosis of functional symptoms and neurological disease opposite

Reassuringly however, studies that have looked at how often neurologists get the diagnosis wrong have tended to agree (at least in the last 30 years) that the proportion of patients in whom the diagnosis turns out to be incorrect later on is about 5%. The graph on the right is based on 27 studies and nearly 1500 patients followed up for an average of 5 years. It shows how the diagnosis has become more accurate over the years."

Moyna xxx

5

Hi Moyna,

Thanks for that

Yeah he did say that sometimes there is an underlying cause of FND such as MS which is why he won’t rule out MS until he has seen further MRI results. It’s good to know that mis-diagnosis is quite rare, I have had several other dx’s over the last year or so all of which turned out to be incorrect. But whatever this is, at least I now have a great nuero who is interested in “me” and how to help me.

I feel better able to cope with whatever the outcome because I know I have someone on my side who is prepared to help.

So for now just starting the increase in meds and waiting for MRI and bloods and then after that hopefully all will become clear.

xx

6

WOW, all these disorders, what a pain in the ass and so unbelievable too. I have a friend who is a nutritionist. We met through trainer at the gym. She started having problems, her foot started to drag.She had MRI and tests done and in the end after alot of worry, it turns out it was stress. I was amazed to hear this. As she told me, the brain is a powerful thing.If you don’t recognise and change things, learn to slow down, your brain will do the job for you, it will slow you down.

I have no idea whats going on with me but this week for some reason feel calmer.Think last week my MRI was looming and had had a bad experience the week before.I, we have no choice but to wait.

Reading everyones posts is helpful, even though I feel im wasting peoples time on here, as maybe MS wont be my problem. Im off to google FND now…oh and can I ask, how long have people waited to get MRI results? I guess it will vary in different areas of the UK. So many things i want to ask, but whats the point, just have to wait to see!x

7

I have found your post really encouraging, all any of us want on this forum is to be taken seriously and not to be made to feel as if we are making stuff up, who would and why? Please stay in touch and let us know how you go. Sounds like you have a great neuro, one who is there to help you feel real answers to your symptoms. Lou x