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Neurology Appointment Today - Nervous

New diagnosis and before diagnosis
#1

Hi ,

Im new here. I have a neurology consultation today and am really nervous.

I have been suffering mild symptoms for quite a few years but everything came to a head back in Sept.

I was rushed into the hospital in the middle of the night after having a seizure. I was conscious but uncontrollably jerking and convulsing.

The symptoms I had leading up to this were:

Extreme fatigue

Right Arm weak & not “working”

Tremor in both hands

Weakness in both my legs

Dizziness / unsteadiness

Strange sensations all through my body (creeping cold & crawling in my arms & legs, numbness in my scalp and face, pins & needles in my hands & electric shock sensations on the dole if my foot)

Muscle jerks & twitches all over my body

Strange sensation of feeling like things were moving in slow motion when I was walking and turned my head

I had a number of further seizure like episodes in hospital and had lots of bloods, EEG, ECG and a head MRI.

The results were all described to me as “reassuring”

The neuro consultant put my symptoms down to a virus and suggested my seizures were disassociative.

Whilst I was relieved they had found nothing sinister I was unconvinced with the prognosis of disassociative seizures as I have no history of stress trauma or mental health problemsand in addition My other symptoms were all (to me) very concerning.

I was sent home told to rest and get back to life, I would be reviewed in a number of weeks.

I have become progressively worse since Sept.

Crushing fatigue which has meant I have reduced my working hours and duties to do a little from home (I wanted to try and keep some kind of normality whilst I recovered / waited for my next appointment) and I have two small children who my husband and parents have had to do a large amount of the childcare for.

Continued seizures (I also can’t drive because of the seizures)

All of the above symptoms - shaky hands, stiff right hand, muscle jerks, weakness in my legs, dizziness, strange sensations all in my body, struggling to find words, frequent urination.

My GP is convinced my condition is neurological but said whilst it could be MS, the MRI results might rule that out, or I may need more imaging.

The last 3 months have been a nightmare I was pretty much fit and healthy leading a happy life with my kids and a good job then suddenly life has basically stopped and I’m limping along trying to keep my head above water.

I am seeing my consultant today and am so worried he will dismiss me again.

I want to know what a reassuring” head mri is and I want another of my head and spine.

Any advise for what I can ask or tips if he seems to be dismissing me?

Does anyone else here have experience of new inset seizure like activity with MS?

Sorry for such a rambling post, I’m just hoping someone will have advice for my appointment later, it’s been such a wait to see this guy so I don’t want to mess it up.

Thanks

#2

Quick update, Appointment today went as suspected. Consultant was very nice but essentially said he suspects Functional Neurological Disorder rather than MS despite having no explanation as to why this would affect me (no history of trauma, stress, poor mental health). He has ordered a spinal MRI, Lumbar Puncture and blood tests for Cortisol and a few other things I can’t remember but said he is doing it to reassure me… I understand that he is working with his evidence but he basically told me to just get in with life. I told him I am totally incapacitated with my symptoms and struggling to maintain levels of normality, with vastly reduced activity for me in caring for my children and in my career. I could have just taken to bed but I’m trying to maintain some semblance of normality - but I feel like I’m at breaking point. I know many of you have felt frustrated by similar situations - any advice is very welcome. Thanks

#3

Hi

if it was me I would wait until I’ve had the mri and other tests and go from there as the results potentially could make a big difference to your whole situation.

Its not nice when you feel like your not being heard/ taken seriously but remember that an mri shows what it shows regardless of what people say or think as do other tests

good luck

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#4

the trouble is you have so many symptoms. I would concentrate on dissociate seizures you say you have been diagnosed with that?

this is triggered by something that could have happened a long time ago your brain hides it so you never remember it, and suddenly it can come back to haunt you with seizure which dont show on EEG but they are just as scary. being pregnant can trigger things off too and screw with your body and your mind.

FND he cant diagnose you with it properly so he is doing a bunch of tests. One of my second opinions thought i had it, not even read my results so when he did he wrote to me and said sorry i cant diagnose you with FND as you have too many positive test results.

It can be hard work to find out why we are feeling like we are. the one thing i do know for sure is worrying about it, stressing over it, googling about it, can make us feel worse. the brain is a powerful thing.

Your neuro has not dismissed you he is taking you seriously to be honest they dont order a bunch of very intrusive tests for the sake of it, he must be doing it for a reason yes to put your mind at ease, and also to make doubly sure he hasnt missed something, so for me its ALL good he is doing that, BUT are you prepared to accept FND if the tests come back negative?

You could match your symptoms with fibromyalgia, M.E. LUPUS, RA, lymes and many more things, and yes anxiety, and even hormone issues from child bearing. I see he is testing you for CORISOL levels.

obviously something is going on. I would keep a diary but only write down things that really are bothering you, or come on suddenly and what you were doing at the time.

I would just enjoy xmas now with your family and wait for the tests. it will be several months and you have to find a way to cope with all this whilst you wait. BUT if it is MS it ain’t going no where, and it actually doesn’t really present like yours has. which is probably why the neuro is not sure.

I had to wait a long time for diagnoses. even though i had positive and scary stuff to deal with. this is part of my journey so that you can see your not ALONE, there are a ton of people out there facing the same uncertainties as to why they are ill. the first thing i did was be honest with myself.

https://livingdailywithmultiplesclerosis.com/2018/03/04/the-beginning/

write a blog it is very cathartic. xxxxxx (thats if you have the time with working and children too lol). xx

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#5

Thanks so much for the insight, it’s really helpful to have an outside perspective.

I guess I just find it hard to understand how ill I have become for no apparent reason. I’m as sure as I can be that I have no hidden trauma in my past, until Sept my life was really really good, so the dissociative element just doesn’t ring true for me (although I am also really relieved the seizures are not epileptic!)

The seizures are actually not the worst symptom. They are awful when they happen and leave me totally drained, but they happen very rarely and then I will have a cluster every 4-5 weeks, they seem to track my cycle (I have Pcos so it’s a bit unpredictable) then I will have weeks clear.

The fatigue is probably the toughest symptom as it has totally upended my life. My husband and parents are managing a huge share of looking after my kids, my husband is houseworking & doing all the driving & cooking, I’ve had to take weeks off work then return on reduced hours, reduced duties and work from home largely, none of it feels sustainable, just us all trying to maintain some semblance of normality.

My arm doesn’t work properly and my hands shake so home and work can be tricky when I can’t lift a saucepan or use my computer / laptop or when my hand starts shaking uncontrollably in a meeting.

When people who know me meet me they are shocked by how much I have changed - drained, weight loss (and I’m already very slim) and dark circles under my eyes. I tell them I’m being well looked after and getting better - but It’s a really hard place to be.

My mood has been fairly positive but it feels hard to keep my head above water some days and I’m worried I will never feel better. I’m aware I’m very naive to the fact that it can take years for many people who are unwell to get diagnosed with what is actually wrong, this is very new for me.

Im relieved the Consultant is doing all the tests, that way I will be confident of any diagnosis I get.

Thanks for the link - I will go read it with a cuppa now.

Thanks again for the advice