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Information for neuro?

Hi all again,

I do read and send vibes to all but yet again, this is an all about me post as I am not knowledgable enough to add support to anyone other than to do some from my own thoguhts, prayers and vibes.

I am not diagnosed with anything, although I do notice on the screen at the GPs it says ’ probable MS’ but that is merely on symptoms over the years I presume.

Anyway my arms are WAY better than they have been for a long time although I still can’t get them above my head and still have the constant pins and needles in one forearm and burning patch on the other. My foot randomly gave way too 6 weeks ago and I tore a ligament in my ankle which is annoying as I feel rather like a stork with only one working leg and 2 half working arms!

My question is, after being convinced by your lovely lot on here to still go to a Neuro appointment despite feeling much better, what should I expect and what kind of info is he/ she going to be needing? We seem to have a bizarre system here whereby I received a letter saying that my notes were being read on 12th December just gone and the neuro in my area would then decide if I needed to be seen or not based on history. Slightly strange without actually seeing the person… It seems I warrant the need to attend a unit further away with better equipment and more specialised consultant. I feel rather a fraud now and in between these terrible times when something goes dreadfully amiss, I am used to silly moving fingers or pins and needles and weird smells and can get by in life fine.

Thanks once again for all the wonderful advice and info and wishing you all health, sunshine and happiness

Jacqui

Most importantly: you are NOT a fraud!!! Just because you’ve adapted to your symptoms does not mean that they don’t matter or don’t need to be diagnosed and, generally, the earlier this is done, the better.

I would guess that the best thing you can do is prepare a concise history of your symptoms: what’s happened, when and how long for. If you’ve had periods when you’ve had symptoms and then periods when they’ve improved to some degree, then I suggest a history that’s chronological, e.g. Jan-Mar 2011: weak arms (some improvement, but ongoing), July-Sept 2011: optic neuritis (improved), Dec 2011: phantom smells (ongoing), etc. If your symptoms don’t go like that, then just list them as they’ve happened, e.g. started in early 2010: weakness in arms, mid 2010: terrible fatigue, end 2010: burning and pins & needles in legs, etc.

The main goal of the symptoms list is for YOUR benefit: it is to let you get everything in without waffling and getting sidetracked. Don’t hand it over to the neuro - talk through it when you’re asked. You can give the neuro a copy at the end, or if you’re really overwhelmed, hand it over, but keep very quiet while he reads it - don’t interrupt him or he’ll not read it all!

If the neuro already has some of this information, he/she might just ask what’s happened since a certain date, so be prepared to start the list mid way through.

The other thing you can do is prepare a list of what tests you’ve had done and what the results were. You might not need this, but you can refer to it if you are asked - much easier than trying to remember on the spot!

You might also be asked about any neurological problems in your family. Again, a list can be handy to refer to.

You might not need any of this(!), but the moral of the story is “be prepared”! Most consultations are over way too quickly, so the less wasted time the better.

Fingers crossed that it goes really smoothly and easily - it does happen!

Karen x

Thank you SO much Karen you really are a star!

I know the GP will only detail my arm weakness and tremor and shoulder problems as my back problem was years ago and most of the other stuff I haven’t mentioned.

I will set to and compile my little history take and go along like a good girl guide. I have to say I am confused as to what I want when I am sooo busy here and under such stress (I have a 3 year old and 3 very difficult autistic sons to look after) so I may be burying my head because of that. Either way I will hobble along and see what comes next. I loathed the MRI on my shoulder so am not looking forward to any more but I am aware that will probably be ordered next.

What other tests are likely to be needed?

Once again thanks for the advice.

Jax

Hey jaqui…

I dont think you have anything to loose by going to see a neuro.You need someone in the know to listen to your symptoms and examine you also…asses you completely as you ahve been having probs for some time…you need to get more answers for sure…and you are definately no fraud. Karens suggestins are great and hope you find then useful too…its good to get it all down on paper and you wont remember everything.in your head and when in a consult you need to make the best of that time for sure…they can only go on what you can tell them… and if you feel it helps then do give them a copy at the end…as they prob wont recall everything either…so they have that to refer to also…

good luck and let us know how it goes…do you have a date yet?

HI Scoobie,

Thanks for taking the time to reply. I am reading and learning all the time. At the moment I have the most painful and annoying stabbing pain in the end of my index finger which is driving me sooo mad I feel like chopping the thing off! It is making typing so awkward. Bodies are weird things aren’t they?!

My appointment is March 21st. I need to remember your comment that they can only go on what we tell them because I have this silly knack of expecting people to know what I am talking about or feeling!

Hope you are well

Jax

The only test that is pretty universal is MRI. A lot of neuros also send patients for an LP. Some send them for evoked potentials too. Occasionally they’ll order other things (e.g. EMG). Plus bloods if they haven’t already been done.

MRI alone is enough though - if it’s positive of course!

Karen x