Hi this is my first post here as I am still on the road to finding out what’s going on with my body. Started having symptoms April 2018 when I started tripping up for no apparent reason. This got worse over the summer resulting in a broken wrist and several other falls. Then started having numbness in feet, weakness in legs, tingling in legs and hands also running to the toilet a lot. Saw GP who discovered I had a slight B12 deficiency. Got injections for this but symptoms persisted. Referred to neuro in Nov 18 told 22 wk waiting list! Symptoms eased off over Christmas and January. Got bad cold/virus a few weeks ago and symptoms returned with avengence together with lovely new symptom of electric shock feeling in legs and occasionally my back. Was so distraught by this GP suggested Gabapentin. Initial dose of 300mg a day got rid of tingling hands, then increased dose of 600mg has relieved the electric shocks. Still tripping occasionally but not too bad. Sorry for the long ramble. My concern is when I eventually see neurology will they take me seriously if I’m no longer having so many symptoms because of Gabapentin. Want to know what’s going on. Has anyone else had similar symptom journey?
Hello Jenlo37 One of the first things that happens with a neurologist appointment is questions about your health if possible list all your symptoms and problems, medication that you take, she/he will do lots of physical tests pushing your arm for you to push back. Balance to many to list here she/he will then put you forward for a MRI lumber puncture and blood tests. With the MRI they will be able to see if you have any legions in your brain or spine most legions are fine and cause no problems, only some do and they are called demyelinating disease like legions. The blood test I think they have found out about your B12 deficiency which is one of the blood tests. The next is a lumber puncture which have if positive with bands helps the diagnosis of MS. So it isn’t if the neurologist will not believe you he will or that you don’t have any symptoms at that time they know this happens. As for your appointment you could ask the doctor to make it more urgent or you can phone up the neurologist secretary and ask if there is any cancellations. I was very lucky and saw the neurologist a month or two after my MRI, my next appointment came in December and the appointment is in early April not far for me now about three weeks. Good luck Kay
When you see the neurologist, they’ll ask for a history of what’s happened to you and will take account of any drugs you are taking.
They should do a physical examination, this includes reflexes, response to stimuli, balance, following eye movements, pin prick tests and many others. Typically the tests will show the neurologist whether there is a neurological problem, and given the exam, they may have strong suspicions of one disorder or another.
Subsequently, they will either adopt a ‘watch and wait’ tactic, to see what happens over time. Or they will send you for tests, these can include MRI, lumbar puncture, nerve conduction, evoked potentials, bloods, and possibly others.
You’d then get a repeat appointment with the neurologist. If they’ve taken the watch and wait view, the follow up will be to see what has happened to you in the meantime. If it was to send you for tests, you should get results.
It’s a good idea to write yourself down a timeline of what has happened to you and when, keeping notes of what has fully or partially resolved. This will be invaluable.
Best of luck.
Finally got neuro appointment through for next week after about 6 months of waiting! My GP has chased this as my symptoms have persisted. I don’t know how everyone on here deals with the waiting cause it is torture. Managing to cope day to day with work etc and am now getting used to dealing with random tripping up or break through leg pain. Have become aware that I’m struggling with saying the right words in conversation sometimes and forgetting things very easily which are a bit concerning. Hopefully next week’s appointment will be a positive step towards finding out what’s going on. Any comments would be great to keep me sane. Thanks.
It’s good to know that you have an appointment at last.
Keeping sane isn’t always a thing we do well on here! (See Brain Fog for more information!)
But just remember, you aren’t going to be leaving the appointment with a diagnosis. More likely the neurologist will conduct an examination after going through your history. Then, the chances are s/he will refer you for tests, including MRI and possibly others (lumbar puncture, evoked potentials, nerve conduction, bloods, others?).
You’d then expect a repeat appointment to discuss the results of the test(s) and further action or maybe just a ‘wait and watch’ with a future appointment to check up.
As you’re now aware, neurology isn’t a simple, ‘be referred, have appointment, get expert opinion and diagnosis’ thing. It’s a long old haul for a complete answer to your symptoms. Limbo is a very uncomfortable place to be. And the trouble is that you do get used to living with altered sensations, they do become your new ‘normal’ (not a word we generally use about MS, or the testing for MS).
Don’t get too set on your final diagnosis being MS either. It might not be. There are other disorders that share symptoms.
If possible take someone with you to the appointment. There’s a condition I call ‘neurologistitis’. It happens when you sit in a neurologists room, following every word s/he says; fully understanding the process and the next steps. You then leave the room and pretty much everything that was said has flown straight out of your head. The job of the friend/partner/companion is to listen carefully and remember what is said.
Anything the neurologist says that you don’t understand, ask them for an explanation. Any unfamiliar words they use, equally, ask, and if necessary write them down.
Good luck for next week.
Thanks Sue I realise this is still just the start of a process but at least it’s a step in the right direction. No offense intended but hopefully this isn’t MS but as my GP says there’s definitely something going neurologically which is not disappearing. I’m really grateful to be able to talk to others who may be experiencing similar symptoms. They really understand how scary, frustrating and painful they can be unlike family and friends who although sympathise just don’t get it. Thanks for your advice and I’m definitely taking my Mum with me as my memory is really bad at the moment never mind in a neurologists room! Thanks again. Jen
Had my neuro appointment 3 weeks ago. He didn’t seem overly concerned and said my symptoms were all unconnected? I found that quite strange. He also made a point of emphasising that he specialises in MS so if there was anything he would pick it up. He did however arrange for an MRI due to my bowel and bladder issues which I am getting tomorrow. He said that I probably won’t get the results for about a month after that and if there was nothing on the MRI he would just write to let me know. I felt glad that at least I am getting the MRI but frustrated that if it’s clear, which don’t get me wrong would be a good thing, it sounds as though I’m then going to be back to the beginning not knowing what’s going on with my body and feeling like I’m going mad! Also don’t know why but I’m really nervous about the MRI even though I’ve had one before years ago and was fine. Sorry for the ramble just need to vent. I really appreciate being able to talk to others in a similar position.
I have had two MRIs once in a old machine it wasn’t pleasant I just closed my eyes, the second time I had at a different hospital same NHS hospital different site, and it was a new machine and not as noisy as the first. It was a lot better. Kay