Hey lovelies, Got my first private neuro apt tomorrow (had one on nhs years ago). I’m having an hours consultation so I presume it should be very thorough. Does anyone have any advice as to what I should ask, tell him, or even advice on what not to say lol. I don’t want to get it wrong especially whilst I’m paying for it. Any help appreciated guys…thank you. Xxxxxxx
Make sure u tell him most important stuff first ie…symptoms that are the most major and don’t rush… Hope it’s better than my run in with lazy private neuro who spent fifteen mins…no neuro exam, no checking of MRI asked if I smoked or took the pill…than said all appears normal and please pay on your way out!! Good luck Kate
I’ll cut and paste my idea of what’s important at the end of this. George found an old one of mine which he’s posted a couple of times recently which is slightly different (better??) so you could have a wee look for that too.
I think the thing not to say is that you think you’ve got MS, unless it’s in your referral letter or was mentioned the last time you saw a neuro (by the neuro). Most doctors do not like Dr Google / self-diagnosing patients!
Other than that, be completely honest!
I hope it goes well.
Karen x
These are the things that I think help at a first consultation:
No.1: Be prepared! (It’s always best to have something and not need it than need it and not have it!)
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Be able to tell the neuro your medical history, any neurological illnesses in your family (if asked) and your symptoms in a succinct, objective manner. Prepare a list / aide memoire to help you. Do not prepare lists with loads of details over loads of pages: the neuro will most likely only want a topline summary / headlines. If they want more info, they’ll ask. A good list will be chronological and focus on the main symptoms. For example, April-May 2009: optic neuritis (recovered); September-December 2010 (some recovery): incontinence, spasms in legs, shooting pains in legs; June 2012 (ongoing): terrible fatigue, deterioration in walking, some cognitive difficulties. If this is the first time this kind of thing has happened to you, then stick to a simple explanation – when it started, what the main symptoms have been and how they progressed, if anything has gotten better since. For example, March 2012: woke with tingling in legs. Developed to legs, torso and back over 2 week period. April: extreme fatigue; tingling areas now buzzing, itching and hypersensitive too. Now: all of the above plus blurry eyesight.
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Take a (short) list of questions if you have any.
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Take a list of symptoms that you are struggling with so the neuro can advise re meds or therapy.
No.2: Do not hand over lists unless you really can’t talk through things yourself. If you do hand something over, do not speak until the neuro has finished reading it (or asks you a question - once you’ve answered it, be quiet again if there’s more to read). If you are planning on handing anything over, keep a copy for yourself.
No.3: Be honest. Do not exaggerate and do not play things down.
No.4: Take someone with you if you can. It is really helpful to have another pair of eyes and ears there so there’s a better chance of remembering what happened and what was said. The other person can also help to jog your memory if needed.
No.5: If the neuro’s taking notes of what you’re saying, give him enough time to keep up and get things written down properly.
There really is nothing to be concerned about. The goal of an initial consultation is for the neuro to work out what the most feasible explanations are for your symptoms and to order suitable tests. To do that, he/she needs to know your history and the results of a clinical exam. The only bit that you can help with is the history. So that’s your contribution: to provide the information that the neuro needs. This isn’t too hard - after all, it’s all about you! A list / aide memoire can help to keep you from waffling or missing out something important though.
Quick update…neuro said have myoclonus jerks! And he said that is a disorder in its own right, fibromyalgia disorder in its own right dx still stands. So that great news, but he is doing a MRI brain and evps anyway to find out why I’ve been having bouts of trigeminal neuralgia. He was very thorough and lovely and I’m now very relieved but still bit confused. I’ll let you all know what MRI and evps throws up. Xxxxx
Good news 
Karen x
Thanks Karen quick question hoax do you get myoclonus jerks for 4 years daily? Do ya know what causes em? Thank xxxxx
Not sure I got that - autocorrect interference maybe??
I’ve had myoclonus jerks for about 2 years and if I don’t take my meds I get them every day. (Even on the meds, I get small ones most days.)
I’ve never investigated what causes them, but my neuro told me mine were the result of spinal lesions. I know that they can occur without spinal lesions though - I just don’t know why, sorry!
“Normal” people get them when they are on the verge of sleep - something to do with the pons switching the motor systems off so we don’t act out our dreams I think. How these are related to the ones that aren’t related to sleep (like we get) I’m not sure though.
If you find out, please let me know!
Kx