neurology appointment experiences - what to ask/tell/expect

Appointments generally. Getting the correct diagnosis, finding the right doctor or dealing with the issues arising from being diagnosed with a hypermobility related disorder.

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Re: neurology appointment experiences - what to ask/tell/exp

Postby WinonaLemonade » Sat Jul 17, 2010 2:51 pm

thanks, i don't know when it will be. i was told i would have it in 4 weeks from when i saw the neurologist but it's beenover 10 weeks and i haven't heard anything but my nerve conduction and emg took ages to come through so i'm not too worried.
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Re: neurology appointment experiences - what to ask/tell/exp

Postby Spireite » Sat Jul 17, 2010 7:53 pm

Hi Shadowlady, I've been to a neurosurgeon as well as the three others as above. That was another waste of time too. Completely not interested even though I was at my worst and with symptoms like yours. He immediately sent me to a rheumatologist who immediately referred me to mental health. I do hope you have better luck.
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Re: neurology appointment experiences - what to ask/tell/exp

Postby Shadowlady » Mon Sep 06, 2010 7:50 pm

Well, I've seen the neurologist and he was lovely (and incredibly fit - woo hooo ;) ). He was a lil perplexed by my symptoms, and wrote JHS??????? under diagnosis! My reflexes were normal. He described my walking as a 'steppage gait' which is, in his words, 'just like a horse' Ha ha ha! Neigh! There are many possible causes for it. He's sending me for an MRI to check for inflammation and lesions in my upper back, neck and brain - he expects it to show nothing (especially the brain MRI), but it's always good to rule things out. I asked him if I'm a medical marvel and he said yes. He hopes Prof G will be able to explain what's going on and what to do, though he looked a lil worried when I told him the experienced HMS physio described this as an unusual presentation. I'm a freak. A horsey, brainless freak :lol: He may also be sending me to Kings for some other tests involving poking my legs and measuring my brain waves, but he needs to check whether those tests would be suitable/helpful first. The symptoms I had of severe constipation and urine retention were neurological, but they've gone away now so that's not a problem anymore. Can't think what else to say apart from I'm ready to walk normally again now please.
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Re: neurology appointment experiences - what to ask/tell/exp

Postby WinonaLemonade » Fri Sep 17, 2010 1:25 pm

i have my mri appointment at last! it's on monday 27 september for my brain and cervical spine
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Re: neurology appointment experiences - what to ask/tell/exp

Postby Shadowlady » Tue Nov 09, 2010 5:21 pm

Hiya Winona, how'd the MRI go? Do you know when you'll be getting the results?

I had mine today, they did my brain and whole spine, then whipped me out, gave me an injection and stuck me back in again! Weird. I wasn't expecting an injection, thought they'd have said beforehand, but nope, they said they wanted 'to get different images'. Seemed weird to me. Though they did play me my own CD which was nice.

More tests at Kings on Thursday, SSEP it's called, Somatosensory Evoked Potential for my upper and lower limbs. Basically, they're going to give me lil electric shocks in my arms and legs and measure what happens in my brain... That'll be fun! Oh, and an EMG as well.

Then I'm back to see the Neurologist mid December. Exciting. Hopefully it'll all be good news.
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Re: neurology appointment experiences - what to ask/tell/exp

Postby WinonaLemonade » Wed Nov 10, 2010 4:26 pm

i'm going for an appointment to get the results on the 10th of december. i can't wait to see what my brain looks like, i am going to be a bit cheeky and ask if i can have copy of the scans to keep. i'm not expecting anything to show up though and am a bit uncertain of what will happen so not looking forward to it

good luck with all your tests!
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Re: neurology appointment experiences - what to ask/tell/exp

Postby Shadowlady » Sun Nov 14, 2010 3:17 pm

:D Whilst I was in the tunnel I decided to ask them if they'd got any good images I could use on me christmas cards, but I forgot after the injection hoo haa, probably for the best, not the best joke I've ever come up with, but yes, I'm also very curious as to what all my insides look like!

All the best for your neuro appt. and results, my appt. is a few days after yours, so we'll have to compare notes again!

The tests were ok, blummin long day what with hospital transport and all. Mind you, door to door delivery for free - can't complain!

Thought I'd describe the tests in case anybody else is going for them and is interested.

I had the SSEP first (Somatosensory Evoked Potential) which is to check what happens to the messages between my hands/feet and my brain. The very attractive man measured my head, made marks and stuck electrodes on my head and neck, maybe 5 or 6 I think? Leaving my hair looking fairly haystacky! The exfoliating stuff he used to be sure the electrodes picked up clear signals was a lil uncomfy, and it did take off the top layer of skin in a few places, but compare the discomfort of that to joint pains and it was nothing. The grazes will heal up in no time, I didn't realise I had grazes till afterwards. I didn't much enjoy having him push in different directions on my head (poor bendy neck), but I didn't have to say/do much for him to start getting more gentle with me, and he did indeed get progressively more gentle as the test went on, good stuff, observant man more than communicative me!

When he tested my arms I had electrodes on my shoulder and forearm too, and he strapped on a lil thing which gave me teeny electric shocks in my wrist, just enough to make my thumb and a couple of fingers twitch. The electrodes on arm, shoulder, neck and brain picked up the signal as it passed through my body. There was a medical student there who helpfully chatted to the guy about it and I did my best to eavesdrop, it sounded as though my signalling through my arms was normal, but the guy did emphasise that everyone is different. Though I did expect a normal result for my arms as they are fine.

For my legs, they took electrodes off my forearm and shoulder and stuck them behind my knees and put the shocks into my ankle, making my toes and arch twitch. They chatted for longer over the results of my legs, I overheard all sorts of electrical terms, but couldn't quite hear well enough to understand what they were saying, how annoying, but the med student did exclaim 'how interesting' at one point... Interesting legs eh?! Heh heh heh. So it looks as though that test may have picked something up.

The EMG (Electromyography) was interesting. I liked the consultant who performed the test very much indeed, he was excellent at distracting me from what he was up to which saved a lot of time and worry I reckon, as there was nothing to worry about in the slightest. There were quick fire questions as he strapped electrodes to my legs and put a few minor shocks in (enough to twitch my muscles, but not enough to move anything) then all of a sudden, he made a swift movement, and he'd only gone and chucked a needle into my leg like a dart! :lol: Twas a very fine needle indeed, and there was no pain from it at all on it's way in or out, even though it went in deep enough to get into the meat of my muscle. I reckon if you were worried about needles you'd only have to look the other way and you wouldn't have a clue they were using needles at all! He also tested my leg strength, apparently they're a bit weak, but taking into account how bad my walking has been for the last 6 months that's quite understandable. He told me then and there that my peripheral nerves are fine, so that's good.

I think that's everything.
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S
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neurology appointment experiences - what to ask/tell/expect

Postby louloutinks » Mon May 23, 2011 5:55 pm

Hi all,

my doc said that I need to see a specialist and also have an EMG done on my arm.

Can anyone tell me what it entails and if it hurts please, as I have read on a website they put needles in your muscles :sick: and it doesn't sound too good - anyone with first hand experience on here?!

Thanks, Lou
Me, 41...EDSIII, dysautonomia, POTS by Prof G but waiting tilt, fibromyalgia/CF

Son,8..autism, BJHMS, hypotonia, persistent anaemia

Mum...EDSIII
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Re: neurology appointment experiences - what to ask/tell/exp

Postby Rosie » Mon May 23, 2011 6:50 pm

Hi Lou

If you search for 'Electromyography' on here you will find it in this thread, and also another old thread which describes the test. Also Wiki have a description of the test if you search on there.

Rosie
Diagnosed HEDS December 1st 2005. DD1 (20) HEDS and scoliosis (now corrected by surgery), diagnosed June 2006. DD2 (18) mild HMS. Son (11) some hypermobile joints, poor muscle strength and seems to be developing scoliosis as well, woopee!
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Re: neurology appointment experiences - what to ask/tell/exp

Postby Stone » Thu May 26, 2011 12:30 am

I've had nerve conduction studies done twice. Depends on what they want to look at - for me they wanted to measure speed of nerve impulses to see if any nerves were compressed. If you have a specific muscle problem they might use needles as the electrodes so they can place them more precisely but neither of mine used them, they just used pads on the surface of the skin.

I did see the needles they use sometimes and they weren't big or scary - you could just look away and it wouldn't be too bad. The electric shocks do make you jump a bit though! Not painful, just surprising/unusual. Try not to worry too much, I was freaking out a bit before my first one but it wasn't that bad :)

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Re: neurology appointment experiences - what to ask/tell/exp

Postby Omega » Mon Jul 02, 2012 12:15 pm

shadowlady
It does sound like you were getting tests for MS?

hope the results come back fine for you.
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