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Your first symptoms - looking back..

Hi there,

I am new to the site. Just waiting a brain scan re: my symptoms. Been put on a 'watch and wait' list by neurologist years ago and things have maybe progressed a bit to say the least. Something going on anyway!

Im just interested if you are diagnosed with MS - looking back to how long you felt ill, what do you now think were the first symptoms of your MS?

If not yet diagnosed - what do you feel has contributed to you suspecting MS?

It's good to talk smiley

Thank you.

My first symptom that was "MS-like" was tingling in my hands and feet. My situation is complicated because I have had a positive blood test for Lyme Disease. The first symptom of that was feeling fluey and having excruciating headaches. The early tingling I had may have been caused by Lyme, but its also possible that Lyme caused my MS symptoms or that it caused an immune response that gave me MS type symptoms. Or its possible that the two things are unrelated, though I find this less likely - what are the odds? All my doctors treat it as unrelated though, so I just have to go with that just now.

The next symptom I noticed was that the skin round my right side felt rubbery and numb when I touched it. Then I got muscle spasms round my rib cage which were very painful. I still get those. I like to say that at least it's a good work out. I have abs of steel!laugh

But it is sore and it always makes me feel oppressed and grumpy when I'm sitting at my desk at work feeling like there's an anaconda wrapped around my middle.

Thank you Space Monkey. I belive the tingling is a usual first presentation. Might be wrong. Hence why I am not sure I have MS. I get tingling but not for long and not often. I haven't gone numb anywhere apart from at night and I don't know if that counts? Cause I am thinking it is to do with my sleep. It's every second night and my arm/shoulder will go completely numb that its dangling and I am hitting it to try and get feeling back - oh does tingle when the feeling is disappearing and then as it appears again. Ive had this in my leg as well. But more often in my arm. But always at night. So I just don't know.

Awful you have Lyme as well. Ive read a little about that and believe it can totally drain you. That must be hard work dealing with both. I feel for you. It's great though - that you are working? I imagine it's a struggle but you should be proud of yourself for keeping that up.

I too am experiencing the same thing. Waking at night and parts of my body feeling like rubber. That's the only way I can describe it. And I rub or shake to get the normal feeling back. This is the scariest feeling ever. It happens to my arms and legs. I find myself afraid to go back to sleep. Have you determined what is causing this feeling?


You have just tpld my story. First fibro, then positive Lyme and now pointing to MS. Lumbar Puncture yesterday. I think Lyme and MS may have a link. I just want to know what is wrong now after a seven year battle and bad mobility.

I am still playing the waiting game so many describe here, i have had most of the tests just waiting for final one then neuro appointment.  I went to see my GP about a swelling on my arm, she totally ignored swelling and asked how long I had had tremors in left arm. I replied that it always does that, gets a bit sore then goes away and my leg does it too. Then she asked about my eye, it was blood shot and sore, again I replied it's just a flare up, the chemist gave me eye drops. My GP was on the phone right away to hospital and that was when I started on this nightmare journey. GP immediately said MS, consultant said to wait and see. That was beginning of April, swelling in arm went away, symptoms have got a lot worse and sometimes I wish I had never gone to GP, it was my first visit in 4 years and look what happened.  Maybe I was better of blaming my pillow for sore neck, hubby having car window open causing the pain in my face and the sore eye, gardening the reason for the pains in arms and legs, walking to far being the cause of wobbly legs, having too much to drink was what was making me run to loo all night, I did think the tightness round my chest was a heart attack though - visit to hospital disproved that thankfully.  

Thank you LuLu. Well that was weird going for a lump on arm and then GP suggesting you have MS!

Has that scared you a little? Or does it start to 'ring a bell' with the way you have been feeling? When you say your leg gets a bit sore - in what way? If you don't mind me asking - what kind of sore/pain? And your neck? Stiff?

And wobbly legs? Im having a bit of that today but more just feeling weak as if they don't really want to do what I am telling them to do. Almost as if I have to think harder about using them.

Hope today is a good day anyway.

Hi Trueman, yes I was very scared when I left GP, turns out she has a lot of experience with ms (mum has ms) so I feel very lucky to have her as my GP. I knew something was wrong but kept finding excuses for symptoms! Left leg and arm both get very sore, i am taking lyrica but it doesn't quite take the pain away. Leg and arm pain is hard to describe, it's like a shooting pain that takes your breath away then turns into a horrible nagging pain. My legs give way at the knees but I know now what to look out for, knees start to feel tired before they fail! If I rest this doesn't happen. I have spent a small fortune buying pillows as I blamed them for the neck pain. The pain would go away and I'd think I had a great pillow, then the stiffness would come back and I'd be out looking for new pillow, the stiff neck gave me horrible headaches.  At the minute I have terrible face pain, my very teeth hurt, rang GP and have been told to take paracetamol, she can't give me anything else until neuro has seen me. I am so fed up with this, if they could tell me what it is not what they suspect I would be able to deal with it. Hope you are feeling better, watch out for the wobbles in your legs, I have had several bad falls.


hello there ..could you tell me more about the running to the toilet at night ...this is me.

I have MS

Hello Issy

This is a weird old thread, people end up answering a post that’s from someone who posted theirs a good while ago. So you may not get an answer to your question. 

When you first join the forum, it’s a bit confusing as to how everything works. 

Rather than posting in the middle of an old thread, why not start your own? You do this by hitting the New Thread button, give it a title and then post what you need to know. 

It might help if you give us some background: are you diagnosed, or at a stage in becoming diagnosed? Or are you just wondering about a specific symptom that sounds familiar to you? 

If your problem is constantly wanting to wee, have you have your urine checked for an infection? 

If you are infection free but are frequently wanting to go, try and get a referral to your local bladder and bowel service. Ask your GP. Or, I believe you can even refer yourself, but that means tracking down the service details. 

Best of luck. 


Well, I am undiagnosed, but my first suspicions arose in 2011 when i woke one day after a heavy night on the beer and felt almost paralysed. This wore off but I was left for tingling fingers for two weeks.  a few weeks later i started to notice extreme fatigue, (normally very fit), fuzzy thinking, balance issues, eye pain, muscle pain, an episode of tinitus and vertigo. Needles to say got on the old google machine and heyho guess what it came up with! 

Dr sent me for MRI and nerve conductive tests, all negative!  So I pushed on and had been relatively symptom free until this week andddd HELLO, worse than before. (also now getting the MS hug, how lovely.Just had an episode here at my desk, felt 90% paralysed in my neck and arms. Went for a lie down and almost back to normal. My symptoms come and go at the drop of a hat.

Don't really know where to turn, cant face going through the tests again if they say negative. The Drs drew a complete blank last time.


Best to all

Sorry to hear you are experiencing symptoms again. Have they checked you out for other culprits? You should at least visit the GP about the recent episode and have them report it on your records as well as get checked out. Apologies if you have already done this!

How long ago was your MRI? Was it spine and brain?

My MRI was 5-6years ago. Having another one soon. 

Its quite lonely not having a diagnosis but experiencing all these very real symptoms. I often feel like I am going mad!

Take care.

I was rushed into hospital with severe nystagmus.  MRI and lumber puncture confirmed MS.  All within the space of a week. Nothing before at all.   Bolt out the blue for me.  The diagnosis was changed to CIS 3 months later and I was diagnosed a second time following another MRI.  No symptoms since that first attack apart from some occasional facial tingling.  Coming up to three years now since my first and only relapse.   

My diagnosis was changed from CIS to MS in the space of 3 months too! Whirlwind!

I too had tingling/numbness but in my hands/feet/torso which connected to the lesions found in my first MRI, but I had no symptoms connecting to the lesions found on the 2nd MRI.

It's comforting to know that you have not had another attack since your first! finger crossed!

I have MS

It's funny how shit happens.

I had the numb face, numb hands for starters.

Looking back, I had several symptoms, but my doctor didn't look for ms straight away.  Why would he?  It didn't help I was at uni at the time either.  Heavy legs, making blinding errors at football.....  All dismissive at the time.

Even after a weekend of....wrestling, it was off to the std clinic after it all went numb down south.  (That was fun with a female doctor and a look of 'students!', though I was quietly - yes!!!!)

Back home and working (not McDonalds (uni joke)), I lost my eyes, went all shakey like a hand held camera.  Aimed for the gap between the car and the side of the road.  Not fun.  Decided then to investigate.  Steroids cleared it up in about a fortnight, but then the tests started as 2 and 2 were put together....(Fell asleep during my MRI !!??)

Dx took ages to confirm, (turned green and almost threw up as neuro explained the results to my mum) and then it was the start of the fun ride.

Wish it had been as fun as SS !  But it wasn't !!

My path has been reasonably stone free.  For that I am thankful.

Take care y'all.  Andy

My onset was simple - my toes went numb.
The numbness slowly spread up my body, then not so slowly, and two trips to the GP preduced the honest statement:
"I don't know what it is, but I do know that you need to see a Neurologist fast".

Seeing a neurologist fast, and NHS do not really belong in the same sentence.
As the numbness had now reached my armpits, I "went private".
The man I saw wanted a whole string of blood-tests, an MRI, and a short sharp course of B12 injections "just in case".
He  said it was Transverse Myelitis

That test came back negative.He went on holiday. The numbness started to fade away.
I went to Prague to speak at a NATO conference.
Just after I return, I get a phonecall from one of his NHS colleagues calling me in for a lumbar puncture.
It seemed that the neuro had simply referred me to himself at his NHS hospital.
It was over a year (and several MRIs) later that the diagnosis was changed to MS.



My first symptom was numbness/ altered sensation from the waist down, had an MRI and LP, before I even got the chance to get the LP results I had another relapse. Second mainly was a lot of nerve pain to my arms, should and neck, with difficulty walking thrown in! LP pointed towards MS. Another MRI showed a new lesion on my spinal cord which wasn't there on the scan a few weeks earlier. Hey presto I have my MS diagnosis! I'm 25 so I didn't know anything about MS. I'm pretty grateful to have a fab MS nurse and amazing neuro!

I have MS

Hey, how are yer ? Maybe you could have a mardle with Duckie.... You're a lot closer to her demographic than I, and she's just starting on this roller coaster. ..... Andy

Hey Andy! I hope you're well! I'm good thank you! I would love to, point her in my direction. Zara

I have MS

Cool bananas! She's currently 5 down on this forum 'I am scared and confused'. Great hair (very Paramore), like your awesome hat !!! Been through a whole heap of poop already.......

I've put a little comment on her post! She does have good hair! Haha

What do you mean lesion on spinal cord ?

I have MS

I woke up one morning and felt like I had been drinking! Giddy and a bit nauseous, eventually the room started spinning. I managed to get a GP home visit (! early 1990s level of service) who diagnosed an inner ear infection. It took about 18 months of further issues,  (sensation like a battery on my tongue cool breeze on one eyeball massive balance and fatigue  and other problems) led to more faffing about  before I had a lumbar puncture which led to a diagnosis.

I may have got treatment 9 months earlier if I had made a fuss

If you seriously think you have MS make a fuss and get some kind of treatment started.

Good luck with not necessarily waiting, they don't have to live with the consequences.


Dizziness vertigo double vision and balance. I'm cis and a lesion on brain stem. If they find another I will be diagnosed ms. Due an mri spine soon praying it's clear of lesions 

I am in limbo like a lot of people!  About 2 years ago I had strange numbness in my legs - by the time I went for test this had gone.  In March I started with vertigo, headaches and feeling sick. Had my first scan in May which showed lesions.  Referred to neuro and had more tests - they came back negative.  Went back to see neuro in September and was told it was highly likely ms.  Given steroids, but picked up an infection, so had a really bad reaction.  Given antibiotics, so feeling a lot better but still have muggy head, feel like my face is being pulled together, numbness in my legs.  I have asked to be referred again, as dont feel as if I am getting anywhere!  Just so fed of feeling so bad! I asked if I should be having lumber puncture and my neuro said no??  Now also have this tightness around my middle.  Hope I get more answers soon! x


I have MS

My 1st symptom was a patch of numbness on my right cheek, around my lips and chin. Was referred at the time to a neurologist, but with 4 young children, all under 9 in (2000), I was too busy. The symptoms disappeared. 5 yrs later I was at college and felt unwell. I tripped over twice & drove home! I called my hubby to help & collect the kids and went to bed (very unusual for me). I woke up and it was dark and I was seeing double. Had an MRI showed lesions but no diagnosis at the time. 3 months later had my 2nd relapse, a 2nd scan revealed new lesions and was given the diagnosis of RRMS. That was 10 yrs ago. Im about to start my 1st dmd & im hoping diet will compliment the drugs.

Sallum your sx sound just like mine resulting in a 6th cranial nerve palsy. What does RRMS stand for ? I know what CDMS is. All the best with your treatment. It just shows from your post how long this process can be. Take care x

I have MS

I was never really told it was ms, but more of a possibility this was due to complications at the time as, sitting under my brain next to the nerve was an infection in my sphenoid sinus, the size of a golf ball! At first they thought it was a brain tumor,So, when I had my second relapse I was told it was Relapsing Remitting MS and to see how it developed! Luckily its been on the slow burner with just small sensory issues, which I never really classed as a relapses. Then came a much bigger issue this year. The guidelines have now changed so I read all the info, got my gp to refer me for an mri before I saw the neuro so we were prepared to start straight away. Its been a long wait since April but now all im waiting for is a call to let me know when delivery is. MS is different in everyone but it can easily switch to become more a agressive form. What is CDMS? Do you mean Clinically Isolated Symptom?

Hi Trueman, how are you feeling these days, when is your scan? I am asking cause I have exactly the same symptoms as you ( from what you say), the numbness in my arms ( at night only), tingling that comes and goes etc. I wonder how you are getting on, its been 5 weeks for me now, I feel like I am under attack, but still hoping! going for my cervical scan in few days time  xx


Hi Margaret. Thank you for asking how I am. I'm a little more sane this last week! Yes, I have a varied set of symptoms that aren't ascribed to MS. But will be having a brain and neck MRI but the appt hasn't come through yet. I've suffered various symptoms for years now but generally have got on with things. A lot of the time put down to anxiety despite being diagnosed with PNH - constant twitching even my tongue! I seem to have 'flares' when my muscles go into spasm (even esophagus)or cramp or shooting pains a lot of the time extremely stiff and sore, alongside small amount tingling, a balance/coordination issue but like vertigo and being disorientated, trouble focussing with movement. Weird heightened sensations. And episode of suspect trig nerve (3rd time). Loads other things ha ha. I'm leaning towards other things than MS since as you said I don't get numbness other than at night. Complete loss of arm or leg! 

How ow are you managing Margaret? It's hard when you know your body isn't quite right but are in limbo. I hope you get further with your symptoms soon. I'm lucky I work from home else I don't know how I'd cope! 

I have MS

Hmmmm.  The first thing that made me go to GP was that my speech was very slurred.  I had woken a few days earlier with a lisp which I thought was strange but I honestly thought I had just bitten my tongue in the night.  However when I discovered that I couldn't write properly either I was a bit worried.  Within 2 days my speech was noticeably slurred and my writing was reduced to spider scrawl and I knew something wasn't right.  My GP has always made me feel that I am wasting his time but on that occasion he said he didn't know what had caused this but that I needed an urgent brain scan.  Needless to say, I was scared witless as I had thought I was a fairly healthy person until that point!

The only thing that may have caused alarm, now that I know it is MS, was that for a few weeks prior to this I had been waking with a numb hand but I had put that down to sleeping in a funny position.  I had had a stiff neck once or twice so I had put that down to sleeping badly too.  The only other thing was that I had had a dizzy spell lasting about half an hour about 3 days before the lisp appeared.  I did thing I might have to take the day off work because I was having such trouble that morning but it cleared up as suddenly as it had started so I put it down to 'coming down with a virus possibly' and carried on with life.

Even when I found myself in hospital waiting for the MRI, I could've helped the doctors more if I knew what they suspected but they wouldn't tell me anything.  As I was fit and well physically, I went for a little wander around the corridors when I was bored.  I had no visitors as the hospital was closed due to the norovirus and phone calls were a little tricky due to the awful slurred speech so I often went walkabout.  I found myself bouncing off the walls a lot though and just thought that I was more clumsy than usual.  If they had asked about my balance and co-ordination, I could've given them another clue because of course, it's something that still happens a lot on a bad day and now I know it's part of the MS. 

Hindsight is a wonderful thing, isn't it?

Tracey x

My first symptom was not long after my daughter was born 4 years ago.  I remember feeling extremely tired, worse than what I'd ever felt.  I actually thought I was coming down with something nasty, which in a way I guess I did frown  I then noticed double vision when looking to my left.  It slowly got worse, as it spread to my central vision as well.  I was diagnosed as having bells palsy and whilst I was still under the eye clinic I then developed more symptoms of tingling, so was then referred to a neurologistx


It took about a year after that to be diagnosed following further symptoms



Bells palsy was where mine started!  I was in Glasgow at a Morrissey concert, I was absolutely shattered and couldn't wait to get back to the hotel to sleep.  I just didn't feel right and my face felt strange, like I couldn't laugh properly.  I kept biting the inside of my mouth.  My face was collapsing.  My partner at the time said I was imagining it.  The next morning at breakfast he looked at me and said, 'yer face has collapsed.'

Visit to gp resulted in a bells palsy diagnosis.  In a few weeks my face was more or less back to normal but the fatigue was immense.  Also my hearing was not good in my right ear.  Next port of call was ENT.  The specialist concluded  bells palsy wouldn't affect my hearing so an mri took place.  That revealed t2 lesions.  Hello neurology!

And here I am, 2 years down the road.  During this time I had an L.P. which revealed CIS.  By this time I was experiencing a burning/tingling sensation in my hands when using a hair dryer, also Intermittent bouts of fatigue.  Then a couple of months ago I had a strange weakness in my left forearm.  It's still there.

I've had a 3rd mri now, it has showed some older lesions have slightly improved but there are a couple of new ones.  Next Tuesday I see my neurologist.  So far I am not on medication but I think that will be discussed next week.  I'm feeling optimistic, I don't know if I am foolish to feel optimistic or not!

I think back and try and make sense of strange occurrences over the years.  For example, I occasionally get a piece of food stuck in my osophaegus, I've had this happen for years.  It gets stuck then goes into spasm.  I can usually dislodge it with warm water and forcing myself to vomit, this is not ideal when it happens when enjoying a meal out!  I've missed whole evenings in the toilet hanging over a basin whilst my meal goes to waste.  Very embarrassing.  I had an endoscopy maybe 15 years ago, they came back and said I had a tiny hiatus hernia.  I've always put the choking down to that...but could it have been ms?  Itchy skin is another issue.  For years and years I've had itchy skin, even antihistamines don't always ease it.  

I have so many questions to ask next Tuesday.  Has anyone else experienced choking?

What a journey this is.

I was told I have clinically isolated syndrome after experiencing numbness from the waist down that last for months during the summer last year. I was encouraged to go to the doctors expecting to be told I got a trapped nerve (had a bad back for years). The numbness disappeared as quickly as it came, I then started getting numbness and tingerling sensation in both hands and was unable to wash my hair due to the feeling I had when I touched wet hair. Touching paper was also really uncomfortable. I had a brain scan which identified 5 lesions followed by another MRI on my back which also showed demyelation. I lose the strength in both my arms frequently and feel extremely tired. My hands are a little better but today I am experiencing pain in my arms and now my legs. I was told by my neurolist said he didn't want to see me for 9 months unless I have a new symptom. I have been given gabapentin of which I am now on 900mg a day. Not sure what is classed as a new symptom or whether these tablets are working? If not do I ask to have the medication increased or changed. I have been given no other info other than I have not got ms but I might in time develop it? I often feel down & have no energy and can sleep for hours!!

Hi Rachellong96

My symptoms started 10 years ago with a 50/50 split body. RHS felt normal, LHS felt numb and slow. Had an MRI which was inconclusive then. I am on Gabapentin which was 900 mg daily but after an episode of "worms" under skin on my tummy (horrible!) my GP said to increase until symptoms go. Now on 2100 mg daily. Top dose possible I think is 3600 mg

Generally okay on this, but other symptoms come and go. Get the MS hug which is painful, normally just on RHS ribcage

Still not diagnosed, but due to see neurologist again in November. Probably be another MRI .

tired of no diagnosis



Looking back I think the very first time I noticed something 'off ' I was in John Menzies, having just been to the cinema to watch Saturday Night as Fever (not my usual choice,I was just bored!) I was looking for a magazine and staggered sideways into someone, when I left the shop with a thumping headache, I bumped into my boss who said "don't come into work tonight looking like that, your eyes are like two pisss holes in the snow!", such a charming man! next a couple of weeks later, having been out, I just could not stand up (and no drink involved, BYOB,and we didn't) good job I only lived round the corner, my friend Dan carried me home, down the stairs from the club, approx 200 yds home, up the stone steps and interior stairs to the flat, pretty much carried on with odd events like that (78/79?) until 87ish when I started getting totally numb leg and coul not feel my feet finally after my GP decided that maybe there was something wrong and I wasn't imagining it all, diagnosed Sept '98, quite a long time!

About 3-4 months ago I had pains in my right leg. They were moving about from calf to thigh, groin, buttock. I then had a weird cold feeling in my foot which persisted for a few weeks. Occasionally pain would appear in my left calf also. Visiting GP he was concerned about the weird sensation so was going to take bloods review and he said possibly refer depending on results. I had a night out which resulted in little sleep with a few drinks. The following day, both legs were hurting and I was overcome by a bout of fatigue which lasted 2 days. Back to GP and he referred with an 'urgent' to neurology.  I was contacted yesterday and am expecting a call regarding appointment in 3 weeks. However, I seem to be going downhill fast, mainly things hurting, sensitive skin, which seems to be worse at night..... Being kept awake in discomfort is the worst. That's the escape, when you sleep.

Im hoping for a good encounter when I see the neuro, don't know what to expect. Will he send me for MRI straight away? Im 42 / male and from what I have read i am expecting a diagnosis of ppms. It feels as though my life is on the brink of ending. I look at my 19 month boy and cry at the thought that he will not have the dad his brothers had.

Hi my symptoms started with freezing feet, then double vision which cost me at optician, getting new lenses.  This was at the start of December 16. Went to gp on 28 December he done all the checks and put a referral in to neurologist, then went to A&E on 2Jan 17.  Apparently I was a mystery!

GP gave me a MC to cover my work - I now was struggling to walk my right foot and cold numbness in my right hand, vision was still double, tightness round middle, balance and dizziness were horrible.  Couldn't stand the smell of food didn't eat much.

Called gp on 26 Jan as I couldn't go on like this, I have a 12 year old son.  I was admitted to hospital underwent a number of tests MRI, CT, lumbar puncture loads of blood tests.  My neurologist appointment was changed brought forward to 30 Jan instead of 10 Feb.  I was told I had MS. I have just been discharged from hospital after being in for 2 weeks. Still trying to get my head round this. 

How are things now?

I am awaiting an mri. The freezing feet is something I can relate to alot. I also have Obstructive Sleep Apnea, depression and other neurological symptoms such as poor balance, occasional speech problems, head fog, and pins and needles.

I have MS

It's a headbanger alright. It will probably take you some time to get it sorted in your head. But don't expect one day to wake up and find you've 'accepted it' and are 'OK with it'. It's truly a kick in the teeth. Don't feel bad that your poor head's still in a spin. 

Generally people are diagnosed with relapsing remitting MS. This means when you next see your neurologist they will talk about starting you on a DMD (Disease Modifying Drugs). Have a look at:

You'll find that there are lots of resources both on the MS Trust website and the MS Society website (i.e. this one). 

You should also be given an MS nurse who will be a good friend to help you through understanding this time, your symptoms and drug options. 

This forum and the Everyday Living forum are also helpful. If you have a specific question, start a new thread by hitting the button marked New Thread, give it a title and post whatever you need. There are often people on here who will try to help out, either newly diagnosed like you, or old hands like me. 

Best of luck, give yourself a good rest and try not to worry. 


Hi everyone I'm waiting on news to see if I have this condition,I've had blood tests done,I've tingling in hands and feet,painful legs and I fall over a lot and bump into things,I have eyesight problem I use a cane and I'm tired all the time.

I have MS

I had my first symptoms in about 1980.  Numbness down the right side of my body, combined with double vision.  I had a few tests, including a lumbar puncture.  All the GP could say after that was "it might be MS, then again it might not".  Those symptoms went away and I lived my life...brought up three children..happy days!

Then a couple of years ago I got the most awful fatigue (you all know what i'm talking about right? LOL)...I developed a limp and was referred to a neurologist.  I was diagnosed with RRMS in February 2016.  It turns out that I have had other symptoms in the years between my first symptoms and getting diagnosed, but the dots were never joined up - least of all by me.

I do have permanent symptoms now - like the foot drop, dizziness and fatigue to some extent is my daily companion, but on the whole i'm doing quite well.  Still coming to terms with it of course - these things take time.  Having said that it was a 'relief' to have a diagnosis because at least then you know you're not losing your mind(ish)

Juls wink

Hey everyone im new to this
I have been getting numbness and tingling in left shoulder blade and pain in one leg mostly its all on my left side get pain in my neck and really bad pressure pain in back of head and now i am getting blured vison in left eye i have a mri on my shoulder and they cannot see anythink. Anyone eles getting this

I have MS

Hi Freeman

An MRI on your shoulder wouldn't show up any nerve damage. It sounds like you could do with talking over your concerns with your GP and maybe getting a referral to a neurologist.



Hi sue
But after arguing with the doctor for about six months he give me a referral
Cuz when my MRI scan back and it was all clear my doctors didn't have a clue what was going on and they said to get on with it that's why I've been arguing with the doctors lol but looking good know
do u have any idea what it mot be

Facial tingling and numbness, also balance problems, dizzy spells, exhaustion and waking up with dead arm on the side I can,t lie on any more because of the pain!! My sore eye is the left one (keeps going blurry, a bit like there,s a piece of onion skin in the middle) and I stumble to the left a lot.As well as biting my tongue when I'm eating and sometimes catching myself doing a sort of shuddering gasp when I breathe in. GP told me all symptoms may be something else, but to have them all together could indicate MS or something else. I was so relieved she referred me to neurology that I didn't think to ask what the "something else" could be. Oh dear!!!!

Hiyas, just registered here out of curiosity, largely avoided anything beyond the occasional Google for MS stuff (as much as that can be both best friend and worst enemy). I'd looked a few things up on here but hadn't signed up until now.

I was diagnosed relapsing/remitting around 2 years ago. First sign to me was a sudden shock to my lower leg out walking the dog that left me with thigh numbness. Ignored it for a couple of months then finally went to see my then GP. I'd dislocated my kneecap several years back on the same leg so assumed I'd trapped a nerve or something.

Looking back now, my GP had her suspicions as my medical records had labyrinthitis a few years ago, a hand tremor a few years before that which I didn't even recall and a couple of other oddities that hadn't lasted long. Referral to a neurologist resulted in an MRI scan for head neck and spine, and me still assuming trapped nerve. Neuro gave me the preliminary MS diagnosis then a 6th month wait for another MRI to confirm it. Thankfully avoided the spinal.

Since then I've been on weekly Avonex injections with a couple of minor flares. Trickiest bit was telling work and family as until then most considered me pretty invulnerable as I never got sick. Gotta ponder if that was a sign of an immune system working a touch too well!

Hi everyone,

Im not diagnosed with MS but will go for my second brain MRI in January. The last scan was four years ago and showed non diagnostic subcortical changes. I was relieved as the neurologist said to wait and see and so I dismissed it. Shortly after that I was diagnosed with breast cancer. I had four surgeries no radiation or chemotherapy and assumed all my symptoms were attributed to the cancer. My last surgery involved discovering in the recovery room  from the doctor that I had sleep apnea. My GP was surprised due to being 50 and not overweight. So all's manageable until recently when I'm so exhausted again worse than before I got the sleep apnea machine. My arms start swelling slightly they diagnose mild lymphedema but as it should only be in the arm on the side which had sentinel nodes removed they CT scan brain head neck and MRI of chest for tumors. All results clear but this June sucked!!

So here are my symptoms mainly over the past four years:

1.Constant mainly-change in bowel health, inability to empty my bladder fully, urinary incontinence mainly when I had a cold, mixing up my words, not feeling like I could hold a good conversation as I'd lose vocabulary, fatigue, tense neck, choke on food if talk or think about responding to a question

2.Progressively worsening- left foot cramps(now right foot also and can threaten more often), crawling scalp,itching, dropping things as can't seem to gauge grasp/ pinch needed to hang on as I walk,some shots of pain or stinging in my legs and arms ( like insect bites) can wake me, fatigue worse.

3. Occasional- tired holding my arms to fold laundry or tired hips to waltz with my husband, tired jaw to chew, dizziness,off balance, go to step one way and lunge another, tired of talking/ thinking

4. Happened once- sensation of  water dripping down back of leg with horrible back and leg pain that went away too fast to be discogenic, tried to order lunch from waiter I'd just recently placed an order with( scary)

5.  Childhood symptoms ??- double vision clearing before surgery was required, electric shocks through whole body when jumped one summer( just thought I hadn't been bending my knees), numb patch on left thigh(saw neurologist but cleared after going to chiropractor).

Has anyone else had sleep apnea as a symptom of MS? 

These symptoms led me usually so super healthy and strong to the GP who found the cancer thankfully at a really early stage. Now four years later I'm wondering if it wasn't MS that caused the wheels to start to fall off my wagon.

wow just saw this is very long... my first ever post on a blog ...Thanks for sharing your symptoms.






Not diagnosed yet but will have a spinal MRI before Christmas (we have to wait in Sweden even if we pay 80% in total tax). My first symptoms was lhermittes sign and opticus neuritis (defect color vision in one eye)tingling shoulder and vertigo. Later I got pain in my back and urinal issues. I paid approx 1000£ privately for investigation (Brain MRI and a LP) I had no oligoclonal bands and MRI just showed vascular changes they said. (I'm 54)
Right now i have bad back pain and got Gabapetin prescribed. I'm think my is a case of transverse myelitis and ppms. The issues with frequent urination persists. The only symptom I don't have is fatigue.

Hi, looking for advice, my symptoms started with numbness in my foot over a year ago,I trip over nothing,its now spread up to just above my knee, My feet are very painful and I walk with a limp. My shoulder/neck and arms feel so tired and get shooting/burning pains a lot. my vision is blurry a lot of the time and I have ringing in my ears, I got so upset the other day because I couldnt remember how to work my hoover, I forget words or just seem to get distracted. Im waiting on an mri scan. the worst thing for me is peeing all night or not being able to hold it in. I really feel as if doc is not helping me at all, Im currently being told I have chronic nerve pain and Im fobbed off with lyrica. any advice would be very much appreciated. thank you.

Hi Mrs S,  why don't you start a new thread on this subject as this is a very old thread.

Just click on the New Thread box and put a little title in and put your comment in the box below :)

Best wishes,

Marjie xx