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cracking up !

I’ve written on here before, so sorry for another moan. Currently in limbo land and no appt with neruo since 2+yrs ago and not got one till end of oct. Last week referred to hospital with suspect optic neurits. Since then been feeling really down. Feel dizzy and lught headed, problems with speach and stumbling around. Got a numb/ tinggling pacth on back of head and under chin, as well as usual numbness in arm and leg.

I have after advise from on here run the appointment centre and asked to be put on waiting list for cancellations, so hoping to be seen before oct. However my neuro only does one of "these " clincs a month

Just wondering should I go in with a list of symptoms when I finally see her- or will I sound totally neurotic??!

Hi, I always take in a list of symptoms and a list of medication and then a list of questions.

I would hand the sympton and meds list to the doc. Then ask your questions as he refers to each symptom.

I often forget some things I want to say, so that`s why I write them down.

It is also a good idea to take someone with you, as a second pair of ears. We can get a bit muddled trying to remember everything docs say.

Good luck. Let us know how it goes yeh?

luv Pollx

Make sure and focus on the main symptoms. It’s sometimes best not to hand over the list - it’s for your benefit really rather than the neuro’s so use it to make sure you don’t miss out anything important, and give the neuro time to make any notes. Sometimes when you hand over a note, it just gets shoved into your medical file without much attention paid to it :frowning:

What you’ve written here sounds fine, although you might want to add some sort of timescale. For example, you say the “usual” numbness - is this a long standing symptom? If it is, you might have a (short!) list that looks like this:

  • 2010: numbness in arm and leg (still got this) [+ anything else and whether or not it has got any better].

  • August 2012: suspected ON, vertigo, stumbling, slurring, some sensory problems on head.

Remember that your job at the appointment is to make sure that the neuro has the necessary info to make the right decisions. It’s all about you, so as long as you have the main points on a list (and you remember to look at it!), you’ll be fine :slight_smile:

As Poll says, try and take someone with you - it can be a big help.

Karen x

You’ve had some great advice from Poll and Karen so haven’t much to add aside from not to say you think it’s MS - doctors hate you self diagnosing and sometimes think you’re neurotic then. Tell them the symptoms concisely as the others have said and let the doctor come up with the suggestions. Wishing you good luck.

Reemz

X

thanks for the advice, i’ve rung and asked to be offered any appointment that cancels-= mines not till end of october.

Any suggestions as to what to do in the meantime. Felling dizzy nearly all the time now with tingling on chin and bottom of face and weakness in left arm and leg. Could the gp prescribe me something ? sorry to sound really dull but you all seem to have more exp[erience than me. x

There are meds that can help the sensory symptoms (e.g. amitriptyline) and dizziness (e.g. stemetil), but a lot of GPs are reluctant to prescribe meds when the patient doesn’t have a diagnosis in case they make things worse. It’s worth a try though. You could also ask to see a neurophysio about your dizziness - they can show you exercises that can sometimes help (called Cawthorne Cooksey).

Karen x

thanks all- just an update really. Just had a phone call from the eye hospital- got an appointment next monday to see them. Been told not to drive as they will be dilating me.

The vision is better than it was- still not quite right though and the pain is getting better. Should I still keep the appointment?

I have been referred for Retrobulbar neuritis, rather than optic neuritis as I 1st thought. Anyone know the difference and what tests they will do ? thanks in advance as always x

Retrobulbar is a form of optic neuritis actually it just specifies where the inflammation is. Retro (behind) the bulbar (eye ball) so the inflamation is between the eye ball and the brain. The other form of optic neuritis is “papillitis” where the inflammation is at the nerve head - where it leaves the eye. the only real difference is that papillitis is one of the rare situations (only I think) where nerve inflamation can be seen.

Optic neuritis usually goes into remission and sight returns often nearly as good as is was. Often only a line or two above where you could get on an acuity test chart at the optomerist (with glasses if you use them). Some clour blindness usually remains and a bit of contrast problem. Actally there is almost always some field of vision defect but usually only detected by a test and not noticeable otherwise.

If they use eye drops to dilate the pupils that is usually so they can look in your eye to check for anomallies - if it is papillitis the nerve head can usually be seen to be swollen but the appearnce of the retiina can be checked. Also they can check if the fluid in the eye is cloudy and I guess other things. Dilating the pupils means the pupils can’t regulate how much light gets in, meaning glare can be a big problem - so a problem for driving.

Pupils are also dilated to enable the pressure in the eye to be measured - same as the puff of air at an optometrist but apparenly more accurate.

They’ll probably do eye chart tests or if can you count fingers if sight is that bad. Colour tests are usually done if you can see well enough and shing a light in your eyes to see how the pupils react (indicating how much signal is getting to the brain (a very simple VEP test).

You should go so progress in recovery can be monitored.

Hope it goes well.

thanks for that jon.

Just don’t want to go and waste their time. My vision is patchy still and colours seem a little faded, but so much better than when i first saw optom about it- 2-3 weeks ago.

is it possible the eye hospital can hurry up the apt with the neuro?

I remember my eyesight had recovered quite a lot by my 4 week follow up. I was told at diagnosis that it should and to contact them if it hadn’t improved in a couple of weeks.It kept improving noticeably to the 12 month follow up and my field of vision (especially colour) tests improved a little bit between 12 and 18 months. I was discharged at 18 months. No more improvement was expected - and I didn’t notice any. My sight is as if I have a smoked lens over the effected eye now - but not usually noticeable. Recently my omptometrist blanked of my good eye while while I was looking at a red object and it seemed to go dark grey. I have a small field of view defect in my bad eye so I have eye test at opticians every year instead of 2 years but I don’t notice the defect and it doesn’t affect driving.

I understand about not wanting to waste their time but the protocol is designed to catch any abnormality in recovery. No-one will feel you are wasting their time.

I don’t know about the opthamologists being able to hurry up the neuro apt - but its worth mentioning. The neuros should at least know what is happening.

thanks- suppose just looking fro some reasurance!

Its been so long since been to hospital to do with these intertwined problems that I’m a little out of practise