Hello this is my first post although I have been reading other peoples posts for a while.
I have my first neuro appointment next Monday (I have decided to go private as I was advised that our current waiting list was 27 weeks) and I have a few questions that I hope someone will be able to help me with,I am sorry but this going to be a long one!
First a little bit of background info-
Approx 2 yrs ago the left side of my scalp and side of my face beacame numb and tingly. This lasted about 4 weeks and then went away.Then about a year ago I started to get a weird sensation in my left leg whenever I got up to walk.It was like i had to wait a few seconds for the message to set off to get to my leg and then a surge of electricity would go through my leg (once i got started it was ok) I decided that it was sciatica and after about 8 weeks it went away.Now during this time I had what I thought were totally unrelated (symptoms?) I worked as a school receptionist and noticed that whenever taking a written message at the desk i would often write the first letter down wrongly (despite knowing that I was doing it wrong-I am not dyslexic) and I was having problems typing sometimes (hitting all the wrong keys-I am and always have been a two finger typist) Then about the end of September I started getting pins and needles and numbness/altered sensation in my left leg especially when i was standing up.After a few weeks it started in my right leg too and then both of my hands but predominantly the right. I never go completely numb and feel pretty much constant buzzing/altered senstaion .It feels as if i have a cuff on my calves or wrists that is too tight and sometimes when i am walking it feels as tough my knees are disappearing and I have to concentrate on the task more.If I look from side to side when walking i feel (not dizzy exactly) off balance and sometimes I feel as though the ground is uneven when it is not.My typing has become worse and sometimes (especially when I am tired) I feel like I have to grit my teeth to type the correct key (it took 3 attempts to type the title of this thread and I had to reset my password to log in as i had forgotten both it AND my user name (having problems with my memory too!)
I am worried that when i see the neuro he will think I am some sort of neurotic attention seeker and I don’t know how much to tell him (I am going to write it all down as when i went to the GP i forgot most of it!)
Also because of reading this site I have thought of other things that have happened in the past which may or may not be related and i don’t know whether to mention them or not so am asking for advice from yourselves.
I am 47 now -When i was in my late teens several things happened;none of which i sought medical advice for (just thought they were on of those weird things and got on with it!) One day I got out of my bed and my legs just gave way from under me for no reason and i couldn’t stand up. I crawled back to bed,slept for a day and was fine the following day.A few months later I woke up with this incredibly tight/uncomfortable/panful feeling around my rib cage-it made it really hard to walk and it hurt to breath.At the time I described it as feeling like i had been kicked by a donkey (I hadn’t done anything to explain the symptoms) A couple of days later it just went.Then when I was heavily pregnant with my eldest child I had 3 occasions when I completely lost my vision in both eyes (everything just went dimmer and dimmer until it was like trying to see in the dark) It only lasted a few minutes each time but was really scary (My midwife said it was most likely a vasovagal? attack and that if it happened again they would investigate but it didn’t)-My question is these things happened over 27years ago. I don’t want to bring them up if they aren’t relevant but don’t want to omit them if they are?
Sorry I will shut up now!
Any advise would be greatly appreciated. This appointment is going to be expensive,i don’t want to waste it!
Great you’re going private to see Neuro. The stress of waiting and not knowing isn’t good. You can always revert to NHS after/IF diagnosis.
My only advice is don’t suggest MS to the Neuro! They don’t take kindly to it. They make the diagnosis. Keep your notes to a few bullet points only. The sight of a notebook or A4 sheet being opened will certainly make him/her anticipate a lengthy consultation and make them want to rush forward through it. They aren’t interested in times/dates and what you were doing at the time. They only want facts.
Personally, I wouldn’t say it was your late teens when you had the incidences with your leg giving way. (It could be dismissed) I’d be saying it was just a vague “few years ago”. Either way, all you’d be hoping for is his/her opinion/thoughts and a possible MRI scan referral. Again, depending where you live, it might be as well to have this initial scan done privately if you.
Above all, don’t be shown the door if you’re not satisfied with the outcome. As you said, it’s an expensive consultation and your money. They are not gods, although some of them like to believe they are.
I was diagnosed two years ago. My Neuro is seen as a formidable lady. They way I viewed it was, she and I are going to have a close* relationship for the foreseeable future. She’s the only one I’ve got, so let’s get a few things straight! In the early meetings, one day, she barked out instructions as she closed my file and prepared to get up to leave the room. I was being dismissed. I remained seated and told her I wasn’t finished yet…she sat back down. I told her I considered myself an intelligent woman and wished to be spoken to in the same manner. If there was something I didn’t understand, I would want my questions answered in a way I could. When we had finished, she said goodbye and was about to go. I put my hand out for hers, to shake hands. She was mortified! She actually got flustered and shuffled the files in her hands and apologised (for forgetting the most basic etiquette) as she firmly took mine… I believe it was the basis for a good relationship between us and we really do have a wonderful professional one. I expect to be treated as an equal, not a lesser being.
I wish you the very best of luck and keep us posted on how it goes.
First let me say tell the Neurologist everything you think could be relevant; history is essential in a diagnosis.
Don’t think they will diagnose you there and then unless it is very obvious; there will be many tests; this will tell you what may happen mult-sclerosis.org
Your crushing feeling around your ribs looks like it could be The MS Hug or Girdle MS hug | MS Trust strange; nothing on the society website about it but it is a common symptom.
Don’t forget to tell the Neurologist all further tests; hospitalisation; drugs will be on the NHS. This is perfectly legal as per a ruling by the Law Lords about 8 years ago.
Lastly don’t worry; easy to say but hard to do I know.
Thank you both for your replies. You sound braver than me Poppy but you are right! I am worried that I will feel intimidated by the Doctor but will try not to be! Good idea about the bullet points-if nothing else that should serve as a reminder to me and keep me to the point.
I don’t think a private MRI is something I can seriously consider although if the waiting list is as long as the 27week NHS wait to see a Neurologist in our area i think we will have to give it some thought (not sure how much they are but can only imagine that they are eye-wateringly expensive?) At what point would you mention to the Neurologist that all future tests/treatments/consultations should be NHS?
Thank you for the links George,I will take a look now.
All the info you’ve been given by Poppy and George is spot on. Don’t be afraid to take notes with you to remind yourself of the history. And don’t be scared to take them out and refer to them. I always refer to mine and doctors don’t mind.
Quite often, people seem to have their initial appointment privately then slot back into the NHS system quite seemlessly. Frequently seeing the same neurologist as a private patient and on the NHS.
I hope you get a good sympathetic neurologist who gives you sufficient time and really listens to you.
I learned to be polite but assertive a very long time ago Belle. Having worked in the NHS in admin and pathology and working alongside consultants, I saw the hierarchy there and despised it. Degrees and letters after ones name makes them a more qualified person, not a better one.
I’m now living in the Irish Republic so it’s health service is a little different. I would wait and see what occurs in the consultation. If you’re told you’ll be referred for mri etc, ask how long that may take as you do have health insurance and funded this meeting yourself. Best wishes.
Forgot to add, here there’s about a three months wait for an mri. The cost of one privately is €200 and you are given a copy CD of it. This is useful as the private scan was done in the local hospital which wasn’t computer linked for public patients in the other hospital.
Well I had my neuro appointment this afternoon. I had to go alone as hubby was working and forgot to tell him loads of stuff. He said he didn’t think it was anything serious but would do an MRI of my head and neck to rule out,not rule in MS.
The consultant was really nice but he isn’t a mind reader! Part of me is really annoyed at myself that I didn’t tell him everything (felt like I didn’t get my point across-totally forgot to tell him one of the biggest problems i am having is an inability to describe the symptoms that I am having!!!) I feel like I have just wasted £200 but then is the most important thing that he is doing the scan as if there are are any problems they will show up there? Please tell me that that is the case?
I.wouldn’t beat yourself up too much, I was the same at all my appointments, remembering everything just after walking out the door, even when I had it written down on paper in front of me (really good thing to do by the way,but only if you use it at the appointment!!) But you are right, the mri is one of the test you want, mine was clear brain and cspine which was very good news as it is quite unlikely it would be ms with that result. I’m still lurking only because I’m still undiagnosed with anything… If I would have just one advice would be, if you can, dont be afraid to chase appointments and results, asking questions whatever they may be. Despite knowing I shouldn’t I cant help but feeling like a nuisance (some practitioners do make you feel like that too!) Good luck
I think a chronological list of your dates and strange signs/symptoms are important. In 2016 I told my GP, a private neurologist, a NHS MS nurse and then a NHS MS consultant about mine, I had the list with me on each occasion. Only the MS consultant eventually put the picture together in December 2016 and said that I have had MS for 35 years! Starting in my face with a facial pain for over 12 months and resultant facial palsy in the 1980s, ophthalmic neuritis on 1997, demyelination shown on a scan in 2013 as a result of tinnitus, but yet I was only diagnosed in December 2016. Please don’t ignore the symptoms over decades, they can be very important in helping you start early treatment. Share these next time you see a consultant. Good luck with your MRI results and my advice is if necessary transfer your care into the NHS system directly to a MS consultant.
Thanks, for that,I appreciate it. I did take notes and I even got them out lol but it was like I couldn’t really see them! I might as well have had a blank sheet of paper with me.
I had got myself in a right tiz about the whole appointment, In fact on the way to the consultation room with the nurse i managed to tip my coat upside down and empty the contents of my coat on the floor and the on leaving the room I didn’t realise the nurse was accompanying me so nearly sut her in the door…oops! She probably went back and told the consultant I was a nutter!! (I can nearly laugh about it now)
I am glad your scans were clear but it must be very frustrating being undiagnosed? How long have you had symptoms for?
I’m not sure by addressing the post to me you’ve confused me with Belle, who is waiting for a diagnosis…? I was only suggesting to her to keep it brief. Obviously years are important, but they don’t need to know what you were doing, who you were with and where you were going etc. I was trying to convey keep to the bullet points for years/incidents rather than, “one day when I was”…type of story.
Now I’m rambling!
I was diagnosed almost two years ago and am lucky to have a great Neurologist.
Thats the trouble with posts they take can on a different life! I agree keep the points brief, but pick out the important issues, after all 80% of diagnosis are as a result of the patients history.
Yep, just reminded me my first apt with neuro, I was beside myself and when she commented that my jacket was lovely, instead of an appropriate “thank you”, I actually said “yes I know”, only realized hours later how bizarre I must have seemed! My first thought that something wasnt quite right goes back to dec 2014. But because it used to go back to normal, I would say any kind of worry really didn’t hit me until sept 2015. So much time passes between waiting appointments that although its been and still is a long road, it’s also strangely hard to believe its been this long. I have just had a nerve conduct study and a repeat of lots of blood so just hoping something will show in that. As difficult as it is, I think we must stay positive and keep believing we’ll get to the bottom of it!
Keep your notes to a few bullet points only. The sight of a notebook or A4 sheet being opened will certainly make him/her anticipate a lengthy consultation and make them want to rush forward through it. They aren’t interested in times/dates and what you were doing at the time. They only want facts.