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First neurologist appointment

Hello, I’m new to the forum, and here because a recent visit to out of hours gp service has resulted in the recommendation of an urgent neurology referral with the phrase ‘?MS’ written on the note I was sent away with for GP referral.

I don’t want to jump the gun without a diagnosis, but equally I’d like to prepare for neurology appointment as best I can, so I’m here to ask ‘what do I need to ask the neurologist on my first visit’ and ‘what should I expect’

The symptoms that sent me to out of hours services at the weekend was a second episode of numbing of the left side of my face, my left arm and parts of my leg. This isn’t a paralysis or even weakness, just a very strange sensation, my face looks normal, but feels thick and heavy as do my arm and leg. This happened first about 3 weeks ago, lasted a week, stopped, and then reoccurred from last Friday evening until now. The two GPs that I’ve seen say it’s not stroke or TIA as I wouldn’t have had the week without symptoms. I’ve been quizzed about visual disturbances and weakness, but I haven’t had any problem other than issues focussing to read when very tired, which I have been more than usual in recent days. I have Rheumatoid Arthritis, so fatigue is something I’m used to. I’ve previously experienced what I called a ‘fizzy face’ on left side as a precursor to migraine headache, but this has gone on longer and without the migraine on the two recent occasions.

My limited knowledge of MS is just the experiences of an old friend, who was diagnosed in her early 30s. Her first known episode was a sudden complete loss of vision which saw her admitted to hospital, plus I have just a general awareness of auto immune conditions (because of my rheumatoid arthritis). I’m 49 and female… am I right to think this would be unusually old (!) for a first diagnosis of MS?

Thanks, any helpful input ahead of neurology appointment would be appreciated.

hi curly

two auto-immune conditions?

unfortunate or greedy?

when you see the neuro give him as much information as you can about your symptoms.

this will be helpful for a diagnosis.

you can ask about any possible treatment available and about an ms nurse.

i have had 2 episodes of bell’s palsy that sounds a lot like your fizzy face.

mine felt like i’d had several anaesthetic injections at the dentist!

when i told him, my neuro looked up and scribbled on his notepad which made me suspect ms.

it’s a bummer but survivable!

i was diagnosed the week before my 50th birthday so you are not too old.

the neuro will have his work cut out separating the ms symptoms from the RA.

does your RA consultant know about the possible ms diagnosis?

hope i’ve been of some use because i have my woolly ms head on.

carole x

Thanks Carole, very helpful. I will take the time to make some notes of symptoms so I get everything across to the consultant. My appointment has been confirmed for next Wednesday, so not long to wait, The rheumatoid team are not aware of the new symptoms, but I see them later this month so can let them know then. Are you saying that your Bell’s palsy diagnosis was actually your early ms? Did your face droop? I’ve been quizzed about face drooping, but this hasn’t happened. I have however now remembered that I have also had some visual disturbances 3 or 4 times in the last few years that I’d forgotten about… I’d put it down to a visual migraine (with no head pain) each time I lost patches of vision, so if I looked at writing up on wall at work big chunks were just blank. It only lasted for half an hour or so each time. I guess I’d better mention that on Wednesday too! Thanks again

Sorry, more questions, what tests would I expect to have, and how long was it before you were diagnosed please?

hi curly

you will probably be given a VEP (visually evoked potentials)

(just looking at a screen and saying when it changes)

i really can’t remember any others but i’m sure there were.

the bell’s palsy happened first when i was 17.

my face drooped so badly that my mum was sure i’d had a stroke.

it still droops when i’m tired.

my diagnosis was in 2008 just before i turned 50.

i had bells palsy again just in time for the neuro appointment when i was given my diagnosis.

i started going to my gp with strange symptoms just before christmas 2007.

i only had one MRI which is unusual because they want to see evidence of more than one relapse.

i can only think that i must have had old lesions as well as new ones and was relapsing at the time of my MRI.

i’m a total fog up!

This will give you some idea what a Neurologist might do and what the tests are for Diagnosing Multiple Sclerosis

Don’t worry it will be fine.

George

Thank you, I will take a good look. I’m oddly calm about it all, for now! Last year i was rushed through gynae oncology with suspected ovarian cancer… I had extensive surgery, but thankfully not cancer. I truly hit rock bottom through fear at that time, and the days between repeated scans and results were unbearable. I’m absolutely determined that whatever is going on I won’t allow my mind is to go to that dark dark place ever again… the worrying just made everything twice as hard to deal with! Thanks for your input.

At my first neuro appointment, about 3 months ago, neuro asked all kinds of questions about symptoms and general health. He asked me to recall any previous happenings from years ago. He looked in my eyes and did basic strength tests. All this resulted in referral for MRI brain scan, had already had C Spine MRI. He was great and gave me lots of info about potential MS and treatments available. My second appt with neuro happened about 5 weeks ago, talked through results and left with a referrel to MS specialist team. I have also had a nerve conduction test recently. It seems a long road to diagnosis but they have to be sure. Being in limbo is so hard but the medics I have seen have been very straight with me and I have been looked after well. If possible take someone with you as you might not take everything in yourself. Maybe write down a few things before you go, questions etc and what to expect next. Good luck with it all. Mel

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Thank you, appointment was today and consultant was very thorough. I’m going to have an mri scan and then we will see where we go from there…