neurology appointment experiences - what to ask/tell/expect

[Mari]

Hello all, and Happy New Year!

I'm afraid I've left this a little late, but I have an appointment in the morning with a neurologist. It was recommended by Dr Hakim in UCLH with a view to having nerve conduction studies done.

I'm usually really well-prepared for medical appointments, but with everything that's been going on, I'm not!!

What is the neurologist likely to ask me, and what kind of examination should I expect?

What info should I give him do you think?

Thanks anyone who can help!

Mari

[Sue New]

Hi Mari,

I have sent you a PM to wish you luck for tomorow, but I have thought of some other things that may be helpful.

If my experience is anything to go by, the actual "neuro" exam will probably consist of him/her touching various parts of your body with a pin or pencil to check for any numbness/altered sensation, checking your reflexes, asking you to repeat "tongue twister" type sentences, checking your eye movements whilst tracking their finger, asking you to walk in a straight line with your eyes shut, watching you walk to check your gait, asking you to touch your nose with your finger and other things like that.

Here is a link I found on the net regarding a typical neurological exam:

http://millercenter.uchicago.edu/learna ... ndex.shtml

I really hope you have a good appointment and come away with some answers to your problems.

Take care

Sue.

[Mari]

I've just finished replying to your PM! Thanks for this extra info, Sue, that's really helpful. It's just nice to feel you have some idea about what to expect, rather than going in 'blind'.

I'll report back tomorrow.
love Mari

[rainbowgirl]

Good luck Mari.

Hope all goes well

[nonyanomemory]

Hi Mari good luck with the appointment. Some years ago now I saw a neurophysiologist for nerve conduction studies and he was possibly the brainiest person I have ever met For the actual examination he did do various neurological tests which I am sure Sue has explained but the nerve conduction studies involved attaching sensors to me which provided a small electrical current to tests status of nerve ending? responses these were fed into a clever computer and gave him the results. It was not painful just a funny sensation - he said I had very 'odd' elbows . Hope I have managed to post in time for you to read the info.

Take care Mari, nonya.

[sarahh]

Hi Mari good luck with your appointment tommorow I hope everything goes ok. Let us know how you get on.

Sarah x

[Mari]

Thanks very much for the support and help, everyone.

Well, what a waste of time - all 1 3/4 hrs of it! The first doctor I saw - a registrar presumably - was thorough, polite and pleasant. After he'd done all the tests (thank you for letting me know what to expect Sue) and listened to my symptoms, he took me in to see the Consultant Neurologist. Though polite, he was arrogant and dismissive and went on and on about how unnecessary the Nerve Conduction Studies were. As he had a machine in his room he did them there and then, but otherwise there would have been a 12 month waiting list, and all for nothing. The results were normal.
I did point out that it wasn't my fault Iid been referred, or my GP's fault etc etc, but there we are.

Anyway, ta for helping.
One thing that came out of it is a possible 'juggle about' of my medication, so that might be a positive thing.
Mari

[sarahh]

Oh Mari

Sorry about the appointment being a bit of a let down for you. The consultant sounds a bit of a /////////////, I think he may need lessons in bedside manner.

Sarah x

[Sue New]

Hi Mari,

I am so sorry to hear the appointment on the whole was a waste of time What is it with Neurologists being dismissive and arrogant? Mine was too (if I didn't know better that mine had retired, I might have thought we were talking about the same person ).

I am glad you got the conduction tests done there and then - at least that saves a 12 month wait. It's good news really that the results are normal, but it still dosn't help to solve what is causing the problems does it?

I have got my Nerve Conduction tests up at UCLH on the 29th January and I am pretty certain mine won't reveal much either It dosn't make the pain any less though .

It may be that the consultant was a bit "put out" that another Dr had requested/suggested the test. I know I have come across this attitude with local Drs when UCLH and Stanmore have requested various procedures for me

What new meds have they decided to try you on this time?

Take care,

Sue.

[nonyanomemory]

Hi Mari,

I am sorry you had a rotten time . My results were fine too - I think the thing is about us bendy bods is that we present with symptoms that many feel are conditions that we appear to mimic,I had a really strong feeling that the particular tests I was having would be negative but would have appeared uncooperative )spelling going wrong this evening am afraid, it turns out from UCHL that my symptoms were a direct result of my hypermobility and the condition diagnosed again was HEDS! As well as the 'odd' elbow diagnosis which I remember being particularly impressed with the medical terminology

The best advice I had was just for one particular problem I was having at the time was from the occupational therapist hand specialist who treated the symptoms rather than the cause. My fingers were randomly twitching really quite dramatically as though they were being pulled by an invisible string like a puppet and although it didn't bother me unduly it appeared that other people and medics found it alarming. She spent appointment after appointment explaining how I was over using my hands and constantly albeit without even realising it anymore dislocating my thumbs particularly and we did a lot of work on how I approached everday tasks etc and how to prevent constant overuse injuries. Other neurological symptoms have never really been properly addressed but as you know I am one of those stubborn people who have all but given up on tests and procedures because I got to the point similar to that which you have just described whereby hospital appointments involving test after test left me feeling somewhat confused and very disillusioned.

I would be really interested to know if he actually said 'why' he felt the tests were a waste of time, did he elucidate on this fact or just deliver the comment, because if he provided an explanation as to why he felt they were a waste of time the appointment may have been more productive. I have often been told there is little point in investigative stuff as its all to do with the HEDS. A good friend here on the site is trying to help me overcome this obstacle at present as gp is urging me to start the whole round robin of tests again. Sometimes I wish HMS/HEDS were better understood as if for example we were MS or diabetic patients presenting with neurological symptoms I am sure we would be treated with a little more respect.

I really do understand how you are feeling Mari and I hope that the change around in meds is helpful in some way. Let us know won't you. Ultimately try not to dwell on it hun, I honestly don't think this experience has just happened to you, if thats some small solace.

nonya x

[Mari]

Thanks for the replies, and sorry for the delay in answering but my husband has been hogging the computer!

Don't worry, I am not in the least bit upset by the consultation. I was annoyed at the time because I find it infuriating how so many consultants seem to have an 'up-themselves' attitude and treat their patients with little respect. Luckily I have met a few Consultants who are pleasant, respectful and courteous - as well as interested!

I wasn't upset though. I think that I felt so little about it because there was nothing resting on this appointment, so to speak. Before I went I wasn't expecting the outcome to give me any answers or a miraculous cure. However, I have been in the same situation many times before, when the outcome of the appointment mattered very much. In those circumstances, I have been terribly upset, humiliated and disappointed. That's why I still feel so nervous before any new medical appointment, and why I like to be well-prepared.

So, in a very round about way (sorry!) I'm saying I'm fine, it's ok.

By the way, the reason the Consultant was angry, was because he said it was clear from my symptoms that they were being caused by nerve impingement/entrapment in my neck. Apparently if it was peripheral nerve damage the numbness etc would be felt in my hand ONLY (occasionally a little could be felt in the forearm) but the fact that mine is in the arms as well rules that out. So that makes the Nerve Conduction Studies needless. So people like me (charming!) are clogging up the system and some people who really need the tests because they are contemplating corrective surgery have to wait 12 months to find out important results.

I completely understand the situation, and why he must feel it is frustrating if patients are referred needlessly. But, that does not give him the right to treat me as if I'm a malingerer or time waster. ("Oh, so you get pain, do you? So, where do you get it then? Oh," - repeating what I've said- "itgoes down the back of your arms, does it?" etc)

The meds change was because I'm on Gabapentin for nerve pain and tolerating the side effects well but when I tried Fentanyl patches I couldn't tolerate the drowsiness. I wondered if I tried Pregablin (also called Lyrica) instead of the Gabapentin - because it has milder side effects - I might be able to tolerate the combination of Nerve pain tablet and opiate side effects better. That was complicated to explain - did it make sense?!

Anyway, thanks you lot for the support - I really appreciate it!

love Mari xx

[Sue New]

Hi Mari,

Good to hear from you and to see that you are so philosophical (is that the right word ) about your appointment.

I'm a tad confused though. The nerve conduction tests the consultant gave you, were they for the hand only? I had NCVS tests on my hands 18 months ago for suspected Carpal Tunnel Syndrome and the tests were inconclusive - the consultant was still adament it was Carpal Tunnel though and wanted me to have the op (but I managed to dodge that by having another Cortisone injection ). I am now waiting to have further NCVS studies at UCLH on Jan 29th to check for nerve impingment coming from my neck (the tests I really should have had 18 months ago ).

Maybe the consultant misunderstood Dr Hakim's letter and gave you the wrong tests? I thought that like me you were having the tests done on your neck.

Look after yourself

Sue.

[Mari]

Hi Sue,
He tested my hands and forearms and elbows, and said that the tests tested for peripheral nerve problems, and that if they were all normal it meant the problems were coming from my neck. He said they didn't test nerve impingement in the neck.

However, his attitude was that if we weren't considering surgery, then there was no point seeing a neurologist in the first place and I should carry on with conservative treatment - physio, pain killers, etc.

So I'm not sure what's going on there.

I supposev I'll just carry on as I was before...And at least the Gabapentin is really helping me, so I'm grateful for that.

love Mari

[MandyG]

hiya

I have my first ever neurology appt at 1pm today. I am so nervous

this is first time I have been sent to a professional about my problems. I am seeing a localrheumy next month then prof g in june

I was just wandering what the neuro does and what he treats?

I know I am being sent to them cause I get tingly arms and legs day and night - worse at night for which I take amitriptyline now

but I have a huge list of symp.toms which I assume points to EDS/HMS hence prog G appt to clarify this lol.

will neuro want more info on my migraines and any shooting pains? will they want to hear more about all my joint pains etc? I am taking a printed list anyway and printed stuff on HMS etc

my physio was also concerned cause I sometimes cant use my hands properly, expecially when its cold, and Ioccassionally get strange things with water - hot feels cold and cold feels hot etc

will neuro want to listen to that?

you can tell I am panicking lol. Also cause I haven't shaved this morning (back and joints were way too sore) and I am worried now they might do a full examination and find my stubbly legs and arm pits lol

xxxx

[Ali13]

Good luck pet, I've never seen a neuro but I do have similar symptoms. Don't worry too much, especially about your stubbley pits! I'm sure they'll have seen worse!