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Lost in limbo

Hi all I am new to this so please excuse if I am asking stupid questions. To put a very long story short. 18 months ago I started with numbness in rt index and middle fingers and a very painful shoulder which was more of an ache really, sent to physio who diagnosed a trapped nerve in yhe neck, unfortunately I was unable to attend for all the excersizes as each time my head was bent forward I had this weird shooting pain like electric which knocked me sick. I soldiered on for approximate 6 months then the pain subsided a little but I began falling over and getting very uncoordinated knocking stuff over ect. I have also seen my GP with fatigue and loss of vocabulary which he said was stress. Well 3 months ago I started with pain I’m my rt eye and blurred vision, saw optition who said my optic nerve appeared swollen and I needed a referral to ophthalmologist ASAP. Saw Gp who refered me as urgent as well as to neurologist (just a precaution). Only got to see ophthalmic on Friday! Waited 2.5 months for appointment only to be told I have some swelling of optic nerve but in some people this is normal(?) I explained that the symptoms seem to have got better and could it have resolved due to time lapsed he said that this is unlikely, however keep appointment with neuro which is 29/06. In the mean time the pain Fromm shoulder seems to have moved toy right leg and can be excruciating at times keeping me awake and I am now using a stick as my balance is poor. My GP has said it is unlikely to be MS as I have too many symptoms, however occupational health at work( I’m a community nurse) are treating it as MS at present. Sorry this is such a long post and it only covers the bare bones to be honest. I am so disappointed to be kept waiting this long for a neuro appointment is this normal?

Hello and welcome to the forum, I am sorry to hear you are having to wait until June to see a neuro but it is quite normal to have to wait I’m afraid. Before you go for your appt’ may I suggest you make a list of your problems, not to long, but put tihe one that is bothering you the most first. Try not to make it a long list as the neuro won’t read it all. Give them a concise record of your medical history. Hope all goes well and you get tests done that will either prove or disprove your fears. Do let us know how you get on. Janet x

Thank you for taking the time to read my rambling post. I look at some of the posts and think it can’t be MS as I have not gone off my legs just got the aches but I look at others and think that sounds just like me. Time will tell I suppose I never have been very patient. Thanks once again x

Hello and welcome :slight_smile:

Your GP is right in that lots of symptoms don’t generally point towards early MS, but I’m afraid I don’t have a whole lot of faith in GPs as far as neurology goes because most of them know very little about it so I think it is best left to the neuro to determine whether or not you really do have “too many” symptoms for it to be MS. To be fair to the GP, there are a whole load of other conditions that could be causing your symptoms including some relatively easy to treat things like vitamin B12 deficiency (I assume that you’ve had a load of blood tests?) so it’s too early to be focusing in on MS. Saying that, it’s also too early to be ruling it out!

Re the wait for your neuro appointment: unfortunately there are far too few neuros so waiting times can be horrific :frowning: At least it’s not too long now. To add to Janet’s advice about getting the most from the appointment, I’ll copy and old post of mine at the bottom which may be helpful.

Btw, the electric shooting pain sounds like L’Hermitte’s. It’s a sign of a problem with the spinal cord (in MS, a spinal cord lesion). It is not associated with stress and so I think you can safely conclude that your GP was having a bad day when he/she dismissed your concerns about your fatigue and word-finding problems without bothering to consider if they might be related to your previous symptoms.

Let us know how things go?

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.

Thanks Rizzo will take your advice.