I am a newbie to all of this so please be gentle with me !!!
Am seeing neurologist today for the first time - have had episodes of dizziness and feeling unsteady on my feet on and off for many years along with a feeling of constant fatigue. After visiting my GP on numerous occasions and being told I was depressed, I have always managed these symptoms myself and been able to continue working full-time etc, resting as and when able.
In June 2012 I began experiencing terrible fatigue, a heavy feeling in my left arm and leg, numbness and pins and needles in my left hand, and a deterioration in my vision (went to Opticians nothing found). These symptoms went after about three weeks and I felt fairly well until November 2012 - I woke up one morning and found my left leg and hand were very weak and heavy and had strange sensations in the back of my head. My Husband took me to A&E and the doctor there confirmed the left sided weakness - had a CT scan to rule out tumour or stroke all negative and was then allowed home. Rested for a few days and then returned to work and was okay apart from continuing blurry vision and fatigue. Have noticed that symptoms are worsening when subjected to any heat - I seem not to be able to tolerate being hot at all seems to totally drain me - (thought this could be due to my age though 45!)
Symptoms have returned with a vengence since Christmas and have had to “give in” and been signed off work for a month- all bloods taken have returned normal so GP has referred me to see Neurologist. I would be grateful for any advice as to what to expect at this appointment and whether it would be a good idea to note down my history as I have here, seem to have a constant fog in my head at the moment and don’t want to forget anything.
Any advice would be greatly appreciated. I am concerned about what the future holds and feel very anxious at the moment about what is going to happen.
Yes - write things down in chronological order - much the same as you have done here x He’ll take your history and do a neurological exam and hopefully if he’s worth his salt he’ll send you for MRI’s and further tests x
I’ll copy an old post of mine at the bottom, but don’t panic about doing things in detail if you don’t have the time. The important things are to be able to tell the neuro what’s been going on - just like you have here - and to be completely honest (don’t play things down or exaggerate).
I hope it goes really 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!)
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 (recovered): optic neuritis; 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.
Take a (short) list of questions if you have any.
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.
The scanner is like a big doughnut with a bed in the middle of the hole. The bed slides into the hole (real name = the core) so that whatever body part they’re scanning is in the middle. A brain scan needs the patient to wear a “head coil” - this is a bit like having a bird cage on your head.
It’s completely harmless (assuming you don’t have a pacemaker or any loose metal in your body), but is very noisy so you have to wear ear plugs and/or headphones. (It’s also very boring - you’d be amazed how many people fall asleep!) The noise is because MRI uses radio waves to gather information. It would be nice if they were tuneful radio waves, but no such luck! Because the radio waves are very loud, the bed can shake a bit - this is the same effect as feeling the vibrations from speakers playing really loud music.
The scanner is open at both ends, but some people can feel claustrophobic because there’s not a massive amount of room between your nose and the scanner wall. The radiographer gives you a buzzer that you can press if you want to get out, but obviously it’s best not to use it because the MRI is rather important for your diagnosis! Closing your eyes before you go into the core and keeping them closed can help, but if it’s likely to be a major problem, then you can ask your GP for a mild sedative.
The radiographer does a very quick scan first to set up the machine (lasts seconds), and then the proper scans start. Different types of scans sound different and you can even tell which direction they’re doing the images from which direction you can hear the noises - if you want a geeky past-time while you’re in there All you do is lie there - the scanner does all the work
It’s important to stay very still so make sure you’re nice and comfy before the bed moves into the scanner.
You can get a copy of the images on disc if you ask. (Most hospitals charge for this - it’s £18.50 at my local hospital.) If you want any help to work out what’s what on them, just ask
Thank you for all your advice I feel reassured that I will be able to cope with the MRI, I’m not great in confined spaces but will just keep my eyes closed! anything is worth enduring if there is a chance of a diagnosis at the end of it - feel like in limbo land at the moment not a great place to be!
