I have seen my gp on numerous occasions over the last 6 months or so. I have had pins and needles in my hands off and on for a while which is now more on than off! I am also getting the crawling sensation across my face, neck, chest and other places . Spasms in my thighs which are becoming more and more regular plus concentration now shot to pieces, oh and the fatigue!! My last 3 appointments have been about persuading my gp to refer me to a neurologist. Yesterday she agreed, but doesn’t think it could be ms because it isn’t just occurring on one side of my body and I’m too old. I’m 50, so out of the usual range but it is possible and I didn’t think symptoms were confined to one side of your body. As someone who’s father is now paralysed with ms, says that everyone is different in terms of ms. Some words of advice from people living with ms would be helpful. Thank you
hi sarah
your gp is wrong.
there is no hard and fast rule about age and ms.
i was diagnosed the week before my 50th.
my symptoms all started on my right but within weeks were on both sides.
great that she has now referred you to neurology.
it may not be ms but you will be wanting to know what IS causing these symptoms.
carole x
Sarah, your GP needs a bit of education in basic statistics or even averages. Yes, it is correct that more people are diagnosed as adults before middle age but that does not mean that if you are middle aged (or, indeed, a child) you cannot be diagnosed. I was diagnosed in my late 40s. Lots of people on here were diagnosed at similar ages or older.
And if you can hear anything in the background it will be the sound of Dr Geoff exploding with rage at your GP’s failure to understand basic statistics! (He’s a scientist so he cack handed professionals like your GP really grind his gears!) At least my (brilliant) GP when I was first diagnosed had the good grace to say that she knew nothing about MS as many GPs will never have had experience of it in practice so we were both going to be on a steep learning curve. That was far more reassuring to me than if she had just spouted some “it will all be fine” BS.
You’re gp is wrong I was dx just after my 50th birthday and all my symptoms on my left. My gp thought it might be Parkinson’s so at least I got a referral to the neuro.
Good luck with the referral.
Mags xx
Hi Sarah
As everyone else has said, your GP is wrong. But at least now you’ve been referred to a neurologist. I hope you won’t have to wait too long for an appointment.
It still doesn’t mean that you definitely have MS. Obviously, everyone is different, some symptoms look like MS but aren’t, I hope your GP has also tested for things like vitamin D and B12 deficiency? There are other neurological disorders which share symptoms with MS.
So, even if your GP had been right about MS, she should have referred you to a neuro anyway.
Sue
Hi Sue,
My Vit D and B12 are fine, yes they were tested. I’ve had more blood tests than I can shake a stick at. I have had other tests as well, my reflexes aren’t very good, but my grip strength and resistance strength in my feet are good. My gp wouldn’t do full tests for thyroid last year so I ended up having private blood tests to check. Fortunately I can rule that out, no thanks to my doctor. I’ve been referred for a nerve conductor test and that is taking an age to come through, primarily because my doctor didn’t give enough information - she only put parathesia down on the form!!
I will get there, with my gps help or not. I suspect it is time to change my gp.
Thanks for the advice.
Sarah
Hello
I lost my sight in my left eye 1 year ago since then I have had loads of tests, mri, ct scan and lumber puncture. Neuro have said I have optic neuritis and although my LP was positive for ms and also damage to my optic nerve they will not give me diagnosis of ms as yet. I feel so frustrated as I have other symptoms, extreme tiredness, pins and needles,loss of strength in both hands. Reading your posts have helped me
Thank you
Sarah, take charge of the situation here! Please. Time is important for you, if it should be an ms diagnosis. It is your right to be listened to. Ask for, no, demand, an immediate referral to a Neurologist. If this is too much like hard work, then yes, change GP. You don’t need to inform you current one or give reasons to the new one if you don’t want to. If you can find a way to afford for a private neurological consultation then do so. You will still need a gp referral though. Once seen, you can revert back to NHS.
Sorry Sarah, I just re read and see gp eventually has referred you. I’d still ask for a private referral if you possibly can. Phone and ask the cost of a consultation in advance. It really will put your mind at rest.
I was dxd aged 55 two years ago, out of the blue. Three episodes of partial paralysis in three days, lead me call an ambulance and into AE Saturday morning. Mri-s, Ct scans, every blood test known to man(!)…Monday morning told I have MS and apparently have had it for some time.
Yesterday she agreed, but doesn’t think it could be ms because it isn’t just occurring on one side of my body and I’m too old.
Forget that bloody Poppycock! Grrrr. Too old?!!! I wonder when the exact “cut off date” is for the age?
Hi,
That must be extremely frustrating for you, a lumber puncture positive test yet no diagnosis. I don’t understand that, my only sight issues are a recently developing floater in my right eye and long term double vision. Not sure if they’re relevant?
I hope you get some resolution soon.
- Sarah glad you got your referral.I for one can tell you that you are never ever too old
- For m.s.I had been treated for years for fibromyalgia given pills from a-z and back again.
- Before being d x with m s .yes it was always on my left sidenote I have it on both sides know it’s not easy but try and not get too stressed about the worry of m s .take care Rosie…
If you ever suffer a significant and apparent relapse, go to an A&E department of a hospital which preferably has a neurology department. You will be referred to a neurologist whilst you are there and then likely onwards to a MS clinic / specialist. I’d sooner wait for a few hours and leave with a piece of paper there and then, rather than wait a few weeks on the ‘never never’.
GPs are so often ineffective or worse, need to be begged before a referral is forthcoming and then, it is probably noted as very low priority (makes me phucking angry).
There are so many details of the GP’s assessment, (as described in the original post) which would be laughably wrong, if they weren’t so potentially deleterious to the sufferer.
One half of the body only for it to be MS? Since fekking when?
50 is too old? well who is to say lesion activity hasn’t been ongoing for decades or other symptoms more easily dismissed have not already come and gone?
And then a complete disregard for the fact that there is a family history of the disease which increases the chances of progeny getting it by five times over (when compared to general populations)?
I can think of another GP who deserves a slap.
All the best.
Do you know what Sarah, that kind of attitude off a GP you need reassurance from & an answer p****s me off. My GP admits she doesn’t know the ins & outs of MS, but goes with what the MS team tell her. I think yours sounds like she is covering her ass & trying to sound professional. She should have referred you sooner & you shouldnt have had to persuade her. Their not Gods & they certainly dont know everything. MS is not text book for most, it manifests differently in people. She summed up her expertise in MS when she said she didnt think symptoms were MS like. Didnt think?!! means she doesnt know. Get a new GP Sarah, 1 that admits to not knowing everything. Good luck with neurologist, hopefully its not MS, but dont let a muppet tell you things that are not true. My neighbour was 59 when she found out, if it was down to your doc she still wouldnt know she had it cos shes too old! Tracey x
You know, when i realised that the possibility was MS, not by googling it, but carefully going by symptoms on reliable websites and then reading further on UK MS websites. I’ve been keeping track of symptoms, and thinking back some things could well have been and gone again.
So I’ve been coming to terms with the possibility that it may be MS, not assuming it was. To be dismissed with my GP attitude, and the fact she hasn’t a clue what it is, but doesn’t think it can be ms based on myths rather than fact. Now fed up because it’s a 20 week wait for neurology appointments.
This is going to be a long wait.
aka LIMBO!
- It would be easier to be hanging by your thumbs wouldn’t it.they get people so ok@$&!# angry we know our own bodies so why do they try to fob us off.as my g p said they need to listen to patients more. Also my physio said"it’s the nerve not the actual bone that is sore"
- She said this when I was trying to explain what the pain felt like.go back to your g p and get a referral to another hospital/neurologist.best of luck take care
- Rosie O’Donnell
hi again
referring to post 13 by paolo smythe -
my neuro diagnosed ms from just one MRI so there must have been old lesions along with major new ones.
thinking back i was always something of a medical mystery.
really strange ailments going back to when i was 12 yrs old.
strange bruises on my legs which just got worse and worse until i was shuffling on my bottom around the house because my legs couldn’t bear my weight.
bell’s palsy and many other things.
i was well used to my GP having to consult his books.
carole x
Think some GPs were originally vets, they probably still have leeches in the medicine cupboard & still use bleeding as a procedure, mind you, it would be better then them doing nothing or playing ‘guess the illness’! Madness Tracey x
Im currently dx with Fibro (as of 5 years ago) they thought MS then but MRI was clear so said fibro - 5 years later I’m having more symptoms and back again for consultants and scans etc. Fustrating