I had my first appointment with a neurology consultant today.
I have been experiencing many symptoms which are similar to those experienced by those with MS. Tingling in arms & legs which have now morphed into very stiff arms, problems with my hands, numbness in my feet, memory problems, pain under my ribs etc.
The neurologist took my history did some reflex tests on my arms, legs and hands and then said that I had nothing wrong with my nervous system and that I had a functional disorder (medical condition that impairs the normal function of a bodily process, but where every part of the body looks completely normal under examination). which would go away in time. I’ve been having current set of problems for nearly a year.
He asked if I was happy with what he told me. I explained that I had undertaken some research into my symptoms and was not happy with his conclusion. I explained that there could be a number of causes for my symptoms including MS, and that I felt an MRI should be carried out on my head and spine to rule them out. I said that my symptoms are having a significant impact on me and I want to get to the bottom of them.
He agreed to get me booked in for a head scan only. He said I wouldn’t be able to keep still for long enough for a head and spine scan, and that he wouldn’t be able to get permission for more than a head scan.
I’d be grateful if I could have some feedback on the following:
Was it the right thing for me to do to insist on a MRI, or are reflex tests sufficient to rule out MS. If reflex tests are insufficient then why was a functional disorder diagnosed?
Should a head MRI be sufficient to pick some signs of MS, which would then point to a need for further MRI scans, or might a head only MRI result in a false negative diagnosis.
He advised me that it will take up to 6 weeks for an MRI to be arranged and that I will then need a further appointment for the results.
- Any suggestions on how I should approach the next appointment?
I think you was absolutely right to request an MRI, as FND doesn’t present itself on a scan and MS usually does I’m not sure how he can rule out MS without giving you a scan first.
I believe a small number of people with MS don’t have any lesions at all show up on a scan too so still can’t be completely ruled out if it’s not on there.
When I first seen my neurologist and told him all my symptoms some similar to yours he did a general reflex test etc and said he doesn’t believe there is anything of concern and was reluctant to send me for a brain MRI. I did have lesions on my brain and only from further symptoms he decided to scan my spine later on and they was on there too.
I think the best thing to do is keep a note of any new symptoms with dates and how long they last for, anything that might not of even related to something neurological I noted down as it could mean something to them and provoke further investigations.
not sure I like the sound of your neurologist, if you’re not happy with how he’s handling it remember you can always ask for a second opinion :).
Best of luck.
Oh the old FND card lol.
I went to two so called MS specialists, even after having all kinds of positive stuff on MRI and VEP etc, because i was born in 1951 the diagnosis didnt seem to ever want to come my way.
The last guy i saw said he felt i had an FND BUT he didnt have my notes well that was stupid wasnt it lol.
After seeing me, and me paying for the privilidge, he wrote to me, very chaste, and said he was sorry he couldnt give me an FND diagnosis as i didnt fit the criteria, and if i ever needed any further support to contact him he had just seen my notes. I actually felt like asking for a refund.
I was finally diagnosed with MS after over 10 years my neuro knew i had it, but because of protocol could not give me the diagnosis.
FND means you have no results on tests, but have neurological type issues, so how he can diagnose you with it before tests i have no idea.
You ned MRI of spine. I am not sure how old you are but if your in the older bracket then dont you know oldies dont get MS.
stick to your guns. a lot of lesions are in the spine not in the brain. You need VEP tests too its what got me my diagnosis the 2nd one came up positive after the first one was in 2008. So dont be put off. Again though FND is real its not just a physch valuation it really can be quite delibating and they have no idea why it happens.
Crazy chick were you talking tongue in cheek when you said oldies don’t get ms ?
lol yes Marjie, why do i say it well… when i had my first full head scan they found a large pocked of high signal foci in the deep white matter of my brain, and the radiologist said it could be demylinating but he felt it was down to signs of aging as i was born in 1951 i was so mad i can tell you. I still believe it was deymylinating as my uncle is a radiologist in Italy and i sent him the MRI and he told my mother he thought they were too.
LOL, yes you do Crazy Chick. It sure is a case of try try and try again with neurologists. I think even radiologists can read MRI’s differently, which doesn’t help us.
I can understand why some people give up and wait and see what happens to them in the future.
So stressful and disappointing at times.
Have you got a new neurology appointment Marjie? I was wondering how you’re doing in the whole limbo/diagnosis farago.
I do think it’s a bit unusual for someone with MS to be found neurologically normal on proper examination by an expert. In your shoes, I think I would try to take some comfort from the neurologist’s assessment.
For what it is worth, there was nothing remotely neurologically normal about my reflexes on first examination by the GP - she was on the phone to the neurologist before I had got my shoes back on. And I think my experience was fairly typical: people with MS do tend to show pretty bizarre reflexes, and, from what I understand, they aren’t usually too hard for an expert clinician to spot. The trick is to find a GP with the confidence to have a go early on - I think some of them just do not feel competent to make a decent job of testing reflexes, so they shy away from it! But neurologists do know what they’re doing.
Anyway, I hope that the MRI gives more useful information for you and that the news is good.
Hi Denis, I think you’ve done the best thing you could have requesting an MRI. And well done for being so blunt and direct with a doctor - some of us wouldn’t be able to do this but shy away. I find it totally dismissive and almost disrespectful that your doc didn’t want to refer you for further tests. I had a brain and spine mri in one go - ordered by an ophthalmologist and yes it was a 60min long scan, no break, so it was uncomfortable but it is doable. Not only that - even if the scan is clean - that does not exclude MS. Early lesions are sometimes small and demylinate, which makes them disappear. And this is what I heard from one of the neurologists I saw, not from doctor Google. I hope the results come back negative for you, and you will be able to get some closure.
I agree about the findings with reflex etc. When i saw my GP she did a few tests and wasnt happy and sent me for appointment.
The neurologist was very thorough i still have him. He used tuning forks, pins and other things and said my reflexes were bad left side, i couldnt even feel him pricking me with the pin from knee down, the tuning fork on my ankle well i never felt it, he did stand up ones, sit down, lay down, and he knew i had a neurological issue, but at the time just wasnt sure what it was he always thought it was MS, but they have to follow strick protocol, and eventually it finally showed itself with a real result he could use to give me the diagnosis.
I remember i told him my left foot was freezing and felt wet, like when you walk through a field with wet grass with a hole in your wellie he loved that description lol
I think there would be something and mine was early stages although we are not sure when it started i think before 2000 as i went blind on holiday then in one eye…and the fun began lol, but i had odd symptoms before that.
There is one thing that sticks in my mind when i first saw my neurologist. I gave him a list of only my main symptoms that troubled me not a long one full of things, and i used plain english, i never used any medical terms.
He did say to me later on when we got to know each other, he always felt turned off by long lists and patients who used the medical words for their symptoms. I did think about it later and well i can see kind of where he came from. I just said my legs felt like a bottle of lemonade being shook up and fizzing which cracked him up, where others would use the correct words for these symptoms.
He said a lot of patients tend to spend way too much time googling i thought at first he was being a bit rude but over the 10 years i kind of understood where he was coming from.
I never bothered to be fair more so now then i did at the beginning to just check to see if i need to worry about a symptom or not. I know that with our symptoms it can be so many different things and a long process of elimination.
One other thing he did say to me, MS rarely shows on both sides, its either the right or the left.
However one side will be more affected say with weakness and numbness and the other side will have some odd things, burning or tingling. I found in the years i have had it, my left is my worse side, and my right is the indicator i am going to have a really bad day, as if it burns or really tingles i do have a bad day.
BUT in all the years i have had it, i can always feel my right foot but my left one drags and is numb most times and i find it hard to walk, so my right side keeps me up right. Humm i wonder if that is why lol. He did say M.E. and fibro will always show on both sides of the body. Fibro will have all the pressure points on both sides and some people sadly get them all which must be awfully painful.
Its odd to me that 3 diseases can be so close in symptoms including in there lymes and lupus and RA it must be hard really to diagnose these things. .
There are definite differences between my right and left side. My right side is far weaker than the left, which is annoying as I’m right handed. So I have foot drop on my right and an incredibly weak right hip; the foot drop isn’t the only reason why my right leg doesn’t work right. However, I’ve got terrible proprioception on my left leg (see, one of those medical terms!). This means I can’t feel much on my left leg, so the pin pricks, touching with my eyes closed, tuning fork tests, etc show that I have no idea what’s going on with that leg.
And your neurologist is typical CC, they hate it when we come in with our pseudo medical knowledge that’s mostly been learned from the internet. They’d rather we use everyday language. Apart from anything else, when those of us with no medical training use technical terms, we sometimes get them wrong. So for eg, I know for definite that proprioception is the correct term for what’s wrong with my sensory sense on my left leg. But that’s one of the few medical terms I absolutely 100% know is correct. So I avoid using any medical terms when talking to the professionals. I’d just say I have very little sensory feeling on my left leg.
I have to say that Proprioception is a technical term, not just a medical one.
Some Psychologists use it, as do practitioners in Ergonomics, and Human Factors, and Sports Science.
It is closely related to (but not the same as) Situational Awareness.
And the tests that you describe really do scream SPINAL PROBLEM, CC.
You have just described my first examination by a neurologist.
He then referred me to himself at his NHS Hospital - and the first I knew was the hospital setting up a date for an LP, followed by a date for an MRI, then two more MRIs, then the Dx of MS.
Hi geoff yes i had a barrage of tests, VEP (positive bilaterally worse in left eye), MRI lesion on top of spine, and O bands on LP but the blood test alongside showed inflammation and this made the test negative for MS. Then more MRI, one enhanced, still showing some lesions i had 3 different lesions in 3 different places over time, and a bright one but the radiologist thought it might have been an ark, but the neuro didnt agree, then finally after 10 years another VEP test which again was positive but higher readings in the left, and finally BINGO my number came up or letters lol…i was diagnosed with PPMS.
Phew we sure do learn a lot on here.
OK one thing i did have which caused me a few issues not sure what anyone would call it lol.
I would step up when there was no step.
I literally forgot to know how to walk i had no idea to put my foot forward which nearly gave me a rotten accident as i went flying and nearly landed in side a large open freezer in tescos lol, my daughter was like what on earth are you doing mum…i swear to god i just forgot how to lift my leg up and move forward.
Going down the stairs before all this blew up I simply missed the second to bottom step it wasnt there and tried to walk on air and ended up breaking my coxic.
Several times i find myself trying to step up when the ground is flat. weird. Or i am werid lol.
And that’s something I didn’t know. There’s me thinking, ooh, get me with my ‘medical knowledge’ and it turns out I don’t have as much as I thought I did!!
Thanks Geoff. Honestly, I don’t know where we’d all be without people like you.