neurology appointment experiences - what to ask/tell/expect

[gila]

... I've never seen a neuro either...good luck with your visit!-
taking HMS info is a good idea I reckon-
maybe highlight for him the bits about proprioception (that is a kind of neurological thing) and autonomic dysfunction in the HMS info- might make him more 'interested' (if he doesnt know about hms yet- and if he is the "only really interested in my area" kind)-

but yep my proprio isnt all that and I'm familiar with other 'neuro like' odditiies...
I often cant tell if my bath is too hot or too cold- until I go scalding red all over/ go dizzy (am 'potsy' too) or my skin goes blue red mottled/ my teeth start chattering after a while (must buy that bath thermometer...)
at times I get patches of skin that feel wet, but def arent, or feel like a hair is tickling me, but it isnt

generally I easily and quickly get pins and needles and get a lot of ongoing/near perma p&n and numbness in one arm/hand (often for months on end) which actually seems to have something to do with muscles in shoulder and neck area doing odd things to nerves and sometimes even blood flow.
xxg

[MandyG]

well I am back

think it was kinda a waste of time cause he asks why I was there so I explained and brought out my list (as I have bad memory)

he said joints were not his area so he will only be interested in the tingly arms

he did a few tests - light in my eyes, reflexes and sticking a needle at my neck and down my fingers to see if it felt the same then he did what my gp and physio have already done - tapping the bit on my wrist to see if I have carpel tunnel

he then preceeded to tell me that tingly arms etc is very normal in young woman so nothing to worry about seeing as I have had it since early teens

I couldn't quite understand him (am always too embarrassed to say that) but sure he said it was def carpel tunnel making my hands pins n needles but that would not affect my whole arm - think he mentioned something about a test but tried to reassure me that it was nothng serious then said it would take a few weeks for the test appt to come through. I am sure that is what he said

my mind wanders when I have appts like this cause I am always worrying I will forget something or worrying if my kids are ok and being good (hubby passed out before we left so I had to go on my own)

not sure what to think except I feel really good that I have an appt with prof g in june as I am sure he will understand where I am coming from

xxx

[gila]

I didnt realize you went today... on a saturday??

re "def carpal tunnel"- yes some of us have carpal tunnel, but many of us have symptoms of carpal tunnel that actually are due to frequently subluxing wrists/thumbs-
both my mum and me were told by orthopeadic doc "def carpal tunnel" and he wanted to straight away organise op for my mum- but she had other op's coming up- and then her hands went better again and now hardly bother her
and for me dr h checked my hands- nope no c p- just hypermobile wrists/thumbs...
xxg

[MandyG]

yeah we seem to get a lot of appts up here on weekend days. My hubby had his MRI in january done on a sunday.

it's quite good cause there is no one there and you get seen on time or before

bad thing today was I managed to get a disabled space which is at front door BUT you have to walk right through the whole length of hospital to get to the booking in desk (which by the way is down the lift), then I had to get back up the lift to go to the waiting room.

didn't have to wait though, but I do feel like he wanted me out quickly.

I dont think it's carpel tunnel. I have noticed sometimes when my joints crack or if I am pulling/lifting/pushing something and my joints feel very weak then I get shooting pains which start where the crack happened or start at the joint which is sore so it is obvious to me that it is all connected

Not looking forward to my rheumy appt next month now - I just hope prof G will give me the diagnosis so I can live in peace knowing it's HMS/EDS
xxxx

[sweetpee]

Hi, Firstly sorry if there is already a thread for this but, I could not find it.

Wondering if anyone can help me, I have been having problems with my right arm and hand since last October. I was admitted to hospital then, as my right arm and hand was very weak, and my ring finger and middle finger had moved together and were pointing away from my little finger. At first it looked like I had dislocated my little finger, but I could move it fine. I get numbness in my little finger and down my lower arm during the night as well. I went to hosp and when they did there checks they found my whole right side was weaker than my left. Thought I might have had mild stroke. Had CT Scan of head and MRI of neck all ok. So sent home to await nerve conduction studies and muscle tests.(Consultand said if nerve test ok would have to look at more rare muscle problem) (By the way have already had 2 carpal tunnel ops on right hand and one on left).

Finally after 7 months waiting I went for nerve/muscle tests yesterday. What a disappointment is all I can say, the doctor who called us in was really rude, never introduced himself, got me to sit on chair and put my arm on the bed, I wasn't close enough so he just pulled at my arm, so I had to move the chair closer (would have been nice if he asked!) I explained, that my hand had become very weak and my 2 fingers were doing this weird thing, and the numbness etc. He did the nerve tests without speaking to me. Then he said that my nerves were fine and I could go, I asked him if he was going to do the muscle tests and he said no. I was a bit surprised and my husband asked why, he said my nerves were fine and that I didn't need them. He then said you don't need any surgery (I never even mentioned wanting surgery) and as I was leaving said everyone suffer with tingling sometimes. By the time I got to the car I was upset, because he had made me feel inferior so I hadn't said what I wanted to say.

Just to clarify things, when I had nerve tests for carpal they came back ok, but my consult wasn't convinced so did an MRI which so the median nerve was compressed. I wondering has anyone else been told there nerves are ok when infact there not, is this anything to do with the HMS.

I have my first appointment with a Neurologist tomorrow and am really worried Im not going to get any anwsers. My hand tends to claw now and pull to the left, Ive been trying to reseaarch it on the computer, and can only find Ulnar drift (which looks just like my hand only turning to the right) or Median deviation, has anyone had this. The only other thing my GP wondered was whether the problem is in my spine, some kind of peripheral nerve damage??

Would really appreciate any advise.
Thanks
Sweetpee

[barkingmad]

Hi Sweetpea,

I hope it went well with the neurologist. the other doctor sounds like a real arrogant so and so.


i am back to neuro on Wednesday, which will be interesting but I am not worried as i sneaked the tests results from the secretary, no MS, no strokes , just independent muscles movements, I have ulnar impingement in both arms, I am hoping he offers to do something about that, as my ortho wont, and I would like him to stop this horrid pain in my spine.

Anyway I hope it went well for you after your last experience.

[leashy11]

I've previously had a chat with a few people on here about tremors, altered reflexes etc and mentioned my Physio and GP want me to see a Neurologist to rule out other stuff but I'm actually a bit nervous about this appointment (Mid Nov) as I don't know what to expect. Can anyone give me any info on what kinds of tests I can expect at this appointment please?

[l00pyp0u]

Hiya,

In all honesty it depends how thourogh the Neuro wants to be.
Generally, it involves reflexes, as per usual, then tiny pin pricks, to see if there is a difference in sensation at various points of the body. They may decide to send you for nerve conduction tests, which are not particularly pleasant. They inset an accupuncture type needle into various parts and pass an electric current down it, to see how much the nerve is transmitting. not wonderful. They may also send you for MRI's, but as I have been there and done that all several times, I personally say don't worry about it too much, yes they're not pleasant, but what is?

LOU

[Blaadyblah]

Hi Leashy, please read through the previous discussion on this topic. You can also call ahead of a consultant appointment and ask the office what you should expect - I've found them to be very helpful in the past when I've been apprehensive.

[Stone]

They may decide to send you for nerve conduction tests, which are not particularly pleasant. They inset an accupuncture type needle into various parts and pass an electric current down it, to see how much the nerve is transmitting. not wonderful.

Just thought I'd point out, not to say Lou is wrong but the tests do vary according to where you have them and who you have them from. When I had a nerve conduction study last year there were no needles at all! it was just conductive rubber pads pushed against the skin and a clip-on electrode on the end of the finger. (quite clever, they shock your arm and measure how long it takes to reach the finger electrode, then get the tape measure out to work out how far apart they were )

The shocks are...I would say surprising cos you don't know exactly when they're going to hit, but not unpleasant, might make your fingers jerk a bit but not painful. Then again I've had a lot of shocks in my time (work in electronics) so I actually quite enjoy them

I wouldn't say they were anything to be scared of though. Just thought I'd butt in before you were too afraid to go!

Stone

[leashy11]

Thanks guys, and thanks Stone for the reassurance! I doubt they'll be very thorough (NHS and all that) and to be honest after reading through the thread and seeing how many were arrogant and rude I'm really not looking forward to it. I've just got some stuff that my physio isn't happy about, right side of my body weaker than the left, tremors in the legs when I do certain movements and a numb little toe that wasn't explained by a lumbar MRI. I'm also a real hospital hater and don't like going on my own but this time I have to which is making me even worse about the whole thing! I'm quietly confident they won't find anything untoward too but my physio and my GP are insisting I get checked out. Thanks for the info.

[Stone]

I doubt they'll be very thorough (NHS and all that) and to be honest after reading through the thread and seeing how many were arrogant and rude I'm really not looking forward to it.

Completely disagree, my nerve conduction study was done by a consultant and he was delightful (it might have helped that he knew my dad)

He was quite chatty while he was doing it and he was saying neurology is incredibly unpopular among medical students these days so you either get someone who's been doing it expertly for years or a really enthusastic person who's chosen it as their specialty because they find it really interesting even though it's uncool. Which is better I'll leave up to you

Stone

[SAMMY]

I'm not getting a good view of neurologists from your posts. Is there anyone who has actually had help with diagnosis and treatment?? I am going through another 'what can they do for me?? analysis mode' but don't want to hit the walls again with the same old answers Is there any point in seeing these people or should I just put up with it and stop wasting my time?? SAMMY

[Stone]

The best bit I got out of mine was a concrete test result saying 'yes, your nerves are definitely sub-normal' in a way that can't really be argued with - which makes it easier in future (for me, when I was trying to convince work I had RSI and needed some adjustments). That's the limit of my experience with them but every little helps

Stone

[hannah]

I got a series of answers of 'approximately normal' from a range of neuro tests, except the autonomic tests, which clearly showed PoTS and another which showed a slight problem processing balance info.

What I got out of it was the knowledge that nothing serious was going on - it was almost entirely EDS and PoTS - which is related to EDS anyway. This meant that physio's were better at treating me because they didn't keep worrying that I had undiagnosed cerebral palsy, or MS, or spinal damage, or brain damage from a stroke.
The PoTS diagnosis meant I take meds and have made lifestyle adjustments that mean I can do sooooo much more, and enjoy things more too - definitely a plus!
The balance diagnosis means that I have some balance focused physio too which helps, and because I know it is real I don't worry about my wobbles - just roll my eyes and straighten up again.

Whether there is any point depends on your symptoms and Dr advice. If a Dr says they want you to go, I'd go. Because either they will diagnose something which will help explain your symptoms and possibly help manage, or they will not, so you can know it is probably just HMS/EDS and manage it accordingly (diagnosis by elimination). This will reassure those treating you, and inform how they treat you.

Bearing in mind that my symptoms were - major lack of coordinaation, speach dificulties, concentration dificulties, breathing problems, twitches, shakes, visual disturbances, semi-fainting etc. it was quite clear that investigation was needed - even if it turned out to be 'just' EDS and fatigue.

If you have part(s) that have lost feeling, nerve conduction tests can see how much damage/compression there is to the nerve, and sometimes there are small operations, such as the ulna nerve release op, which can make a huge difference.

If you have a good GP or physio or other medical person, be guided by them.

H

P.S. Leashy, I too had a lovely neuro doing my tests - a young technichian who I had a great laugh with, and when odd results started arriving he called the consultant, who also had a great sense of humour and a great bedside manner. And don't worry - first appointments rarely involve tests - they normally just decide which tests to send you for.