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Newbie question

Good Evening All,

My name is Michael, 42 and live in Nottingham.

My story so far; in 04/02/2014 I was diagnosed with Acute Transverse Myelitis and couldn’t feel anything from my neck down, I could walk but everything was numb and weird. I have my first MRI in Feb and they found a spot in my C2 spinal cord. I had a spinal tap done by students who took 3 attempts to get fluid out but they hit a nerve which felt like someone throwing acid on my legs. I was offered steriods for 3 days, oral and after 8 days in hospital I opted to take them at home due to not resting or getting any rest in the QMC.

I relapsed 6 weeks later at the end of March and took IV steroids through a daily visit at the QMC for 3 days. I pretty much recovered by October but was left with severe fatigue. I then left work 10 months later to look after my kids and through this time I had no problems as I managed to cope fairly easy.

Every year in the summer time I would visit the QMC with weak legs and spend an over night in hospital and then asked to leave by a neurologist stating it was anxiety or a panic attack, which wasn’t true. This happened every year for 24/48 hours and then gone, fine again.

In March this year I was coming back from work really tired and this got worse through the days and nights until June. I started to get really heavy legs and a pain in my right side on my lumber spine area. I kept seeing my GP about it and they tried me on the different tablet but Pregabilin 200mg a day down from 300mg, which seems to have helped.

I was referred to neurology and spent 2 hours in a MS relapse clinic in July 2018 to be told, I can’t see you as you don’t have MS. The Dr then find a neurologist and he performed what I call a “broom cupboard inspection”, the usual strength tests and was told to be on my way and that I have Functional Neurological Disorder since 2015, here’s a website, neurologicalsymptons.org, which came as a complete shock to me.

Since June I haven’t been the same, weak legs, fatigue and not concentration and stuggled at work. I feel fine go out for walks and my legs just stop. I’ve had 2 non epeleptic siezures in the last 3 weeks.

I have given up my hobby fishing as I can’t cast a rod, my GP has told me to stop driving and I am not having issues at work as I work on a 4th floor and they have said I am a “health and safety” risk and got OH involved.

I had a an appointment at neurology last week and I questioned the diagnoses of FND and asked for an MRI which I got after much perseverance but was told is it still FND.

Has anyone else been misdiagnosed FND on here? my symptoms mimic so many other conditions

My Neurologist said in 2014 that I am a low to medium risk of MS within the next 5 years due to my spinal cord damage, they look at my notes and can’t get passed this FND and I am hopeful the MRI scan will be clear. I have no one I can talk too, physiotherapy won’t touch me and counselling say I don’t need counselling?

Any ideas…or experiences.

Thank you in advance,

blimey michael

you need to be around other people with neuro conditions because we all understand what each other go through.

are there any groups nearby?

i am very lucky because where i live there is a group for any neuro condition.

they run hydrotherapy sessions and gym sessions.

unfortunately it is only available for people with a bolton postcode.

ask your gp if he/she is aware of anything.

good luck

What was the result of your lumbar puncture?

All I was told, the results show your a medium to low risk of any other illnesses.

Whilst st I agree the NHS do a great job, having to wait between 14-18 weeks is frustrating.

I will do some digging on the web for any support groups in Nottingham, I am sure there are. It’s one of those things, friends start to think your making it up ect.

That is a good question. What was the result of your LP? If there were no oligoclonal bands in your cerebrospinal fluid, and you have no demyelinating lesions on your MRIs, then clearly it’s not MS.

Have you seen Symptoms - FND Hope International ? There is a lot of information on there. It must feel like you’ve been blown off with a crap diagnosis after having very real symptoms. And I do understand, there are some very real symptoms, many of which present in a similar way to MS.

There’s no way you should put up with no treatment / physiotherapy. Perhaps you need to see your GP and have them understand what symptoms you have and what treatment you need.

I do hope you can do that.

Sue

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