Hi all, I hope you don’t mind me posting here, I have a referral to neurology next week because my optician wants to check I don’t have some kind of a tumour on my optic nerve, but my GP clearly doesn’t think I have as he messed up the referral and I ended up having to fight for it. As a result I’m expecting to be fobbed off and I don’t actually think I have a tumour myself, but there is something wrong so I want to have an idea of what else it might be before I go. I just wrote down my medical history for the last year of everything odd that’s happened and I think some of it could be MS symptoms. Its long and boring but could someone please have a quick read and see if it does sound possible and worth asking the neurologist about if the GPs tried to tell him its nothing already? April 2012 - went to docs as had recurrent UTI with pins and needles in hands and feet and flashing lights and was worried might be kidney problems again. Blood tests clear. Pins and needles never improved, by December almost constantly in left arm and leg and sometimes right side as well. May 2012 - migraines started again after 15 years without. Think had mild to severe headaches almost permanently since then but generally ignored as blamed them on all my other symptoms. June 2012 - went to docs as had suddenly developed tinnitus, motion sickness and vertigo. Tuning fork test showed hearing loss in one ear. Referred to hospital, appointment in September 2012, motion sickness and vertigo were improving by then, hearing tests fine, said it was probably just a virus and sent me home. September 2012 - woke up with spasm in left side of neck one morning, lasted about a week, really painful and couldn’t move head properly, had a few milder occasions like this since then. October 2012 - got cramp in left leg from toes to thigh one day, couldn’t walk properly as so tight, lasted about a week. Often got severe cramps in feet and legs prior to that but generally didn’t last longer than 20 mins or so (and still get them now). November 2012 - banged head on cot one night, next day had blurry vision and arm went dead for most of the day, doctor at work suggested to go to a&e in case had concussion but was too busy. Went back to normal after a day or 2. December 2012 - left arm almost permanently feeling numb although could usually still use it, often completely dead at night or when I woke up in the morning. 15th December 2012 - felt like had something in right eye but I couldn’t find it, went to walk-in centre, couldn’t find anything either but gave me drops, from then til mid January eye kept intermittently going so blurry I couldn’t see even to walk for up to 20 mins at a time and felt like there was a big air bubble or something pressing around it. Went to gp week after, optician Jan 7th, eye test ok, optician asked for referral to neurology within 1 week to check there wasn’t a mass compressing my optic nerve. 2 weeks later gp referred me to opthamology instead. Mid Jan 2013 - often find myself really tired whilst reading daughter her bedtime story and quite often she’ll suddenly go “mummy what are you saying?” and then I realize I’m talking about planes or binmen or something that is nothing to do with the story. Still happens now. End of Jan 2013 blurred vision improved but started getting shooting pains through right eye and can still feel pressure around eye. Start of Feb 2013 caught cold and at same time started getting bad headaches almost permanently mainly on right side of head, paracetamol not much help, still getting most mornings now. Mid Feb 2013 started getting electric shock type pains through fingers and wrists regularly throughout day. 15th Feb - boss asked me my postcode and I couldn’t remember it at all. Realized that the other day I’d had to go and open my front door to check what number I lived at because i couldn’t remember and I’ve quite often had trouble finding the right word for things lately when I’m talking to people. 17th Feb woke up with massive earache and hearing double in right ear. Next day completely lost voice even though throat not sore, had bad tinnitus in right ear and felt like all inside of head swollen on the right. Voice came back after 2 days, ear still feels swollen and whistling, electric shocks through both arms and legs and seeing sparkly dots when standing. Also, what is likely to actually happen at this appointment please as I have no idea what to expect? Thanks x
Hello and welcome
That is one hell of a lot to deal with in one year In which case, I am absolutely disgusted with your GP - you should have had a referral a long time ago
It’s possible that some of this is perfectly “normal” stuff caused by infections or viruses, and my (unqualified!) gut feel is that it isn’t MS, but you definitely need a proper investigation. Has your GP at least done some blood tests?
You said “kidney problems again”. Kidney dysfunction can cause neurological symptoms - do you have a history of kidney problems and have you been checked recently?
You said that you were referred to ophthalmology - what did they say? Or is this that referral at last?
If you are seeing a neurologist, then the appointment should involve asking you why you’re there (something like “I’ve had all these weird things happen to me over the past 12 months and my optician thinks it might be neurological” - get a medic in there somewhere so the neuro knows it’s not just you who thinks it), asking about your medical history (you’ll need to think right back to childhood before you go so you can answer this properly), asking about your family medical history (to see if there is any potential genetic influence; not all neuros ask this though) and then doing a clinical examination which involves testing your reflexes, making you walk in particular ways, looking in your eyes, testing your sensory perception, etc. I’ll copy and paste an old post of mine underneath this - it might help.
Neuros seem to vary in how much attention they pay to GP’s letters, but if you think your GP may have done you a disservice, it might be worthwhile asking to see the referral letter so you know what you might be up against. They have to show it to you - NHS guidelines, never mind the law - so don’t take any rubbish about not being allowed to show it to you.
I hope the appointment goes really well.
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.
Thanks rizzo, that’s really useful. I’ve only had the one set of blood tests done back in April last year, they were to check my kidney function but came back normal. I don’t have a history of kidney disease as such but was in hospital for a week with a random illness a few years ago that they decided could either be a delayed penicillin allergy or henoch-schonlein purpura, which could then lead to kidney disease so I had to be checked regularly for a year or so. I got lots of kidney infections for a while but nothing serious. Its been one thing after another since then! Unfortunately I’ve not seen that actual doctor since then as its a big practice and she’s semi-retired, the other doctors have been pretty much “in-out-ignore anything other than exact things happening now” since. The doctor that made the referral to ophthalmology has never even spoken to me, it looks like he just got the letter from the optician which clearly says “referral to neurology within 1 week”, ignored it for 2 weeks then sent it to opthamology for a non-urgent appointment with no covering letter. I’ve not had the opthamology appointment yet, thats also next week. After another week arguing with the medical secretaries because the gp had gone on jury service, they rang the neurologist and sorted things out so that I got an appointment sent a week later, so I have no idea if there is a letter, but if so it probably says I’m a hyperchondriac nutjob! I am starting to feel like a hyperchondriac to be honest, but the optician seemed quite panicked and made me take the letter in person to the gp the same day to ensure it got dealt with quickly so the fact its taken 8 weeks and all that hassle has me quite wound up
Perfectly serious here: if it turns out that those delays were important, I hope you make a formal complaint with the GMC against that GP. It’s unpardonable and unprofessional, never mind potentially dangerous Best of luck with the appointments. Kx
Thanks rizzo. Just a quick update - I had my neuro appointment this morning - he’s very sure its not a brain tumour, so that niggling thought can be got rid of now. He did say that the optician was right to take it seriously though and it does all sound neurological, so I’m being referred for an MRI which I should have in 6 weeks or so, to check for signs of nerve inflammation and if there are any, whether its an isolated case or something ongoing, so I don’t know if that means it could be MS? Then I had my ophthalmology appointment this afternoon and they agreed there was nothing to see at the moment but it was probably optic neuritis. So, overall, quite a positive result, its not a big lump in my brain and they didn’t just fob me off
“Something ongoing” could be MS, but there are other causes too.
Glad that it all went well