Last reply 3 years ago
Thought it was something else?

My first symptom was a discomfort in my shoulder. It wasn’t pain as such, but something wasn’t right. It could have been bruising, although the feeling stayed.

A week or two passed and I went to the GP who put it down to a trapped nerve (almost correct I guess) and gave me some ibuprofen. This made no difference. A couple of weeks later I had optic neuritis and things quickly deteriorated over the next 24 hours. I was taken to hospital and once a few things had been ruled out, the fear was it may be brain tumour.

Once I’d had an MRI, I was told the good news that I had MS and not a tumour. The most bizarre set of emotions!

Have you or your doctors ever thought your MS was something else? Either before or since diagnosis?

Keen to hear

G

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graham100
3 years ago

I had very similar thing, a deep pain top of right arm like a toothache type of pain, difference being I had been tested with optic neuritis 18 months earlier. And was at my check up. Told doc at Westminster hospital about pain, was told that’s not ms, good I thought, 6 months later the pain had left the right arm, moved to left, exactly the same, and started getting heavy legs, lead boots, tested again. Yes ms. And the arm pain was undoubtedly that to he said, just not the normal. “But ms is like looking into a Crystal ball, we just don’t know”, Dr xxxxx, neuro top man London. (What chance we got) lol.

PS name removed to avoid any potential legal issues – Stumbler. πŸ˜‰


lady-caroline
3 years ago

My first episode was also very similar, we had had a car accident in February that i suffered whiplash on the right side of my neck.
A month later on a Thursday i was taking a nap after a busy day and woke up with a numb pinky finger on my right, I called my mum who is Physio and she suggested it might be a trapped nerve form the whiplash. It worsened over the next few days. I visited my Gp who gave me diazepam and sent me on my way. The Sunday night while my husband was out i was having a drink and i noticed my ice cold drink felt warm on my face, like after being numbed at the dentist, I looked in the mirror and the right side of my face had dropped, I called my mum again and not wanting to worry suggested it was a Bell’s palsy and to go to out of hour GP. I headed down to them and the Dr just kept saying it was to much of a coincidence that both my face had dropped and by this point my arm was very weak and numb. I was told to wait and see what happens.

I did my best to work the Monday, Tuesday i had a training course i had paid a small fortune to go on that i was not missing!! My mum called me after and asked how i was, i had not improved by this point and was very tired, she insisted i went to GP the next day.
I went and she sent me to A&E. Thats when it all kicked off with scans and tests, Tumor and stroke ruled out, I was kept in over night ( honestly the worse night of my life, but thats another story for another time) with no answer, i was told to go home finally and to wait for and MRI a week later, this is when the lesions became clear and i was told that i was most likely MS.

I have had one relapse since, optics neuritis, also in my right side that i luckily got over very quickly once i had a course of steroids.
I am due to start Avonex in January.

I hope you are doing well now. πŸ™‚


sunnydaylover
3 years ago

Hmmm interesting. I was gymming alot, strength training, weights, and could do all my pull ups, dips, pushing out, but when came to lifting above my head, pushing up on machines, had a pain in my left shoulder.I carried on with a lesser weight and it wasn’t so bad, but then next time, it was there again, did new warm up exercises, but it didn’t get better.I carried on with weights but didn’t do any exercise that may have aggravated it. I hadn’t done anything where I thought ooh, ive hurt my shoulder, so I have no idea what caused it I left gym in march/april time, and its had months and months to get better but no, as soon as I knead fondant for cakes, or lift up, its there, so, reading the above, its interesting to think this may well be pain from MS, and not that I mustve injured myself though never knew how.


graham100
3 years ago

Hi @sunnydaylover, as I was teaching salsa you can imagine some of the moves in free style dancing, and I thought I had twisted something, though could not remember when. It’s just so strange.


pavo
3 years ago

I was diagnosed with a trapped nerve and an inner ear infection before I got a new GP she knew right away what the problem was


tabbycat
3 years ago

I slipped a disc lifting a heavy rucksack onto my shoulder in an airport, which showed up in MRIs and they werent looking for anything else. However the result was masses of numbness and tingling and no pain, which I realise now was my first relapse. Which caused which I will never know, but I was not diagnosed for ten years until the other side of my body registered all the same symptoms.
The funny thing is the first symptom was a small patch of numb skin on my stomach, which I googled and came back with leprosy! As I had just come back from living in Zambia, this wasnt impossible. Shame really leprosy at least is curable now!


northernlass
3 years ago

Mine started with numbness and tingling down both arms and legs and feet and with a definite band of numbness around my boobs and back..everything wasn’t working properly especially my hands and feet.. πŸ™ I was in Australia at the time and had a X-ray on just my spine which the neurologist told me I had Scoliosis of my spine probably through my heavy backpack.. things got worse so I flew home to the UK and went on a waiting list (9 months in total..)to see a Neurologist who after tests had me do an MRI of the spine only and when I got to see her for the results she just said I’d damaged the cushioning in my spine probably from my heavy backpack.. By this time I was recovering (Just over a year in total) No mention of MS.. which is good really as I carried on with my travels and now have two fantastic kids and lots of great memories.. πŸ˜€

Mine started when i was about 31 (now 42!) with a weird partial paralysis of my left upper body and face……apparently, trapped nerve!! Chiropractor and Β£200 down it started got get a bit better!! Then a year later, vertigo…….year after that urine infection!! Fatigue…etc etc……’you need more exercise’ my dad used to say!! I still played football then. My knee eventually gave up and started hurting badly. A few years later i went to see a second or third physio and she noticed that my balance was dodgy but strength was ok. Anyway sent me to see a neurologist….MRI, LP and physical examination later was diagnosed with MS 5 years ago!! Now realise all of those other things were relapses!!


ruggermad
3 years ago

Similar to Ladycaroline I got hit from behind in my car and had some issues with my neck straight after the crash. Within a few days I awoke to find my arm completely numb and I was unable to control the fingers on my hand.
My GP thought I had a mini stoke but the stroke specialist was bang on when he suggested MS after an MRI

I have had about five years of symptoms from numbness, strange feelings of sunburn (in the winter) through to l’hermittes sign which over the years were never really taken seriously.

Waiting for NHS England to prescribe Tecfidera and I am due to start on that anytime soon.


jonesbear
3 years ago

I was told for about 3 to 4 years that I had a trapped nerves one in back and then one in my neck,so it got to the point that I just stopped going to the doctors when I had the warm sensations and the numbness in various parts of my body from my feet to my face. Then my left arm went numb and I had no control my fingers or grip in my left hand,what finally convinced me to change my Gp was when I went to a friends wedding and after a few drinks my whole left side went numb and I couldn’t stand or walk and had to be helped my car and my wife had to take me home(my wife wasn’t drinking). So after seeing my new Gp after one appointment he sent me for blood tests for b12 deficiency an electric nerve ending test,muscle test which led to an MRI scan then a lumbar puncture which confirmed ms. I’ve been diagnosed a year now and until my diagnoses I knew nothing about ms and still know very little except it is taking a lot to accept that I have it and that it is a very emotional and physical struggle for me and people closest to me.


katfight
3 years ago

@gpeps i was exactly the same, pain in shoulder and neck, told possibly trapped nerve or carpel tunnel. A year down the line optic neuritis and fear of a brain tumour! What a relief when I was told ms, for about 4 hours i was happy… then it hit me and I sobbed like a baby at the reality of what i was told. Emotions where going crazy and symptoms went from fogginess, optic neuritis to unable to walk and a million other things all within 2 days. I was diagnosed last November 27th.. what a year this has been :$


tabbycat
3 years ago

This is a fascinating post – so many similarities!


jdd0310
3 years ago

My first symptom was when I found that my right foot was slapping down when walking (commonly known as Foot-drop). Something was obviously wrong, but all my research uncovered nothing that would explain it. After about 2 years of pestering various doctors, several MRI scans and other bits and pieces I got the diagnosis of primary progressive MS, not the answe I wanted but at least it was an answer presented to me and my wife with the care and attention of a Hippo with something else on his mind.


judy-gy
3 years ago

Hi all. November 5th 2005 one sided facial pain. Had antibiotics for ? Abscess ? Trimeginal neuralgia MRI said no. Horrible unpredictable one sided pain for 5 months, three meds tried – then Amatrip turned off the pain, and back to work. 2011, foot drop, told not ms. 2014….. Balance shot, go, nuro, MRI ms. Jx


lina
3 years ago

Hi all I was driving my son’s T reg polo as my punto was in the garage I just thought I’d pull my arm muscle and my hand curved like a claw so I put it down to driving a car with no power steering so went to GPs female GP was confused about my symptoms she thought I had a mini stroke but felt fine no problem with my left side of my body went for mri scan showed inflammation dieasese so was asked to go for another in May thats when it shown MS thinking back had lots of trouble with neck demylation of the neck and spine

Lina


ames
3 years ago

My right arm was “asleep” when I woke up, stayed numb for a couple hours. Hospital thought I’d slipped a disc & might need surgery. Follow-up w GP led to MRI and diagnosis. Total shock; no history in my family.


rich1982
3 years ago

This isn’t the easiest thing to share, but I wonder whether anyone else has been through something similar. My first symptom about 7 years ago was bowel problems – nothing major, just discomfort that kept me awake sometimes and I found I couldn’t eat rich or stodgy food any more. Went to the GP who thought it might be IBS and gave me some drugs (don’t remember the name). The drugs didn’t help so I just learned to live with it. Then around the same time I started having sexual problems. For someone recently married this was very difficult for me and my partner, especially when we decided to try for a baby a couple years later. Without an explanation, this brought our relationship to breaking point and I started to question my feelings, my sexuality and just about everything else! Went to the GP who recommended romantic texts and flowers, a great help – NOT (he’s now divorced incidentally so his text can’t be that wonderful!) By some miracle and thanks to the strength of our friendship, our relationship has survived and we have a daughter. The strain has taken its toll on both of us though.

Three years ago I started with bladder urgency (not easy with a baby to look after) and blurry vision on exercise. Finally this summer I had a relapse involving loss of leg power/co-ordination and diagnosis followed….GP > A & E > Admitted to hospital > MRI > Evoked Potentials > LP > bingo. For me my first emotion at diagnosis was one of relief to understand the symptoms I have been having. My wife, who has medical background, has figured it might be MS a year ago so it wasn’t a total surprise. My latest GP was really upset that he has missed it, especially since we brought it up, but I don’t hold it against him, especially sine I was a typical bad male patient in 1. not going to the doctor soon enough or as frequently as I should have done, 2. not wanting to ‘bother’ him with all my symptoms at once and so not giving him the full picture. I’m now on Avonex, and although I have my ups and downs, feel fortunate to have the support of the NHS and my friends/family, finding it best to assume that MS was always in the pipeline for me. How hard must it be for people in less developed countries?

Apologies – that’s a long post, but it’s all off my chest now! Guys – have you experienced anything similar?


stumbler
3 years ago

@rich1982 , yes, constipation, bladder incontinence, sexual dysfunction, lower limb weakness are all common symptoms of MS. Your experiences are fairly similar to most who have navigated the route to diagnosis.

You’re probably still in the learning phase about MS, hence your presence here. You need to learn how to manage the MS, so you can try to live in harmony with it.
So, bring balance into your life, with what you eat and how you live. Avoid extremes and try to banish stress and worry from your life. πŸ˜‰


graham100
3 years ago

@rich1982. Hi yes gone through all that, but was diagnosed before it really all started. After optic nuritice 2010, st thomases Westminster, when tingly right side heavy legs, 2012, they pretty much said it straight away,, my gp had no problem giving me Viagra. Well a cheaper version, that don’t work now though, my wife said she really isn’t bothered, Hmmmm. 32yrs married, I wonder if a sexy 30something might work better for me,, the wife said it does for her, (didn’t understand that??) do what you can to stay sain, do as stumbled said you will get good advice there. Don’t listeren to me. Lol. Good luck.


jonesbear
3 years ago

I’ve been and are still going through a lot of what you’ve mentioned I think a lot of what happens in the bedroom department was largely down to stress for me what with being newly diagnosed and not having a clue what was going to happen to me and just working to try and take my mind off ms,which didn’t work. But after easing off with work and just having a sit down and a long deep talk with my wife things eased up in that department so much so I’m going to be a dad for the first time in May. Just wish I could get everything else sorted as quickly.


dreamerbeliever
3 years ago

My first symptoms were pins and needles in my feet so the main query was diabetes or trapped nerve at the time!


denisa
3 years ago

At first, I thought: eyeball pain? It must be the draft in the car. Blurry vision and pins in my eye? Some mascara entered and irritated the spot.

Fast forward >> blurriness got worse >> went to a wedding the next day (wasn’t bothered by the eye to much) >> woke up feeling good the next morning, but still having the blurriness >> enter migraine on my right side >> enter more blurriness due to running for a taxi >> ophtalmologist appointment the next day >> nothing wrong with the eye! but you have optic neuritis! go and have a visual field analysis and a neuro consultation >> vis. field exam turned out with a beautiful scotoma >> neurologically ok, but you need to be admitted to hospital for 5 days, to have Solumedrol i.v. … You only have two eyes >> enter 5 days i.v., MRI, Visual Evoked Potentials >> RRMS and Arnold Chiari malformation >> 2 months later, the Chief of MS comitee: you have CIS, and are prone to develop RRMS, to be sure do some allergen and vitamin D3 tests >> did those, no infection present and my D3 levels low >> you must do a lumbar puncture also >> one month after: LP appointment and one day hospital admittance, all ok, come in 10 days for your results >> the results are not in yet! wait some more >> today it’s been more than two weeks and still don’t know what my LP results are >> still no treatment >> the neuro wants to see me next week to talk about some stuff (what stuff? Geeez!)

So… Long story short – I have CIS and getting bored waiting on doctors to effectivelly counsel and help. They seem so bothered by questions.


eddy300
3 years ago

Past 7-8y I had seizures with electricity and fast breathing.
I lost some of my balance when I. Was 19 the last seinure I had this year! How does it adds up to MS?


hannah015
3 years ago

Hi

My first sign of ms was the sudden decline of my left arm, I was sent to hospital with suspected stroke, then a brain tumour, after that was ruled out they did MRI which showed it was ms. By then my left leg didn’t work either and I had spasms so they were pretty sure it was ms anyway then.


Anonymous
3 years ago

@ LadyCaroline was it just your pinky that went numb? I woke up last sunday with my pinky and finger next to it with numb skin, I thought I’d slept on my arm at first but it hasn’t gone away, my arm has been feeling weak and today my leftie feels stronger, righty is feeling sluggish and a little bit of pain in the top back of my arm when lifting it up. I have this pain in my left arm and my physio has told me it’s ms muscle weakness at the back of the arm and behind the shoulder blade. He gave me exercises, rotating your arm from the shoulder and another to put the back of your hand in the small of your back and sit straight pushing your hand into your back a bit for the shoulder. I’m gonna go see him next week as the problem with this ms bugger is ignoring potential other stuff going on too, could be a damaged nerve in the elbow? A normal person would probably have gone to their gp by now! but then I’ve found since diagnosis that any gp I see seems inclined to put everything down to ms!


lady-caroline
3 years ago

@sj-low, It started with a numb little finger and then progressed to my other fingers spreading to my whole hand and arm with the kind of feeling you get when you hit your funny bone in your elbow.I had no pain exactly just this uneasy restless feeling. It also got progressively more weak. i started to get a sort of wiggling when i was smoking and lifting my hand to my face, then lifting heavier things like a full kettle or saucepan my whole arm and had would shake in a kinda floppy way.
The thing that was the best test to know if i was improving or worsening was to touch the Dr’s or my husbands finger with my index finger and then touch my nose, I’m sure we have all had this done at some point, it really highlighted the weakness and coordinations problems i was having with the arm. Also squeezing someone else fingers with both ands will show a weakness if there is one.

Surely a muscle weakness in the back of your arm and shoulder blade shouldn’t effect your hand etc so much to cause a significant problems.

I think sometimes MS can make you either a total hypochondriac or the opposite, I spent a long time feeling like every twitch or headache was a relapse and now I’m quite dismissive of most things thinking, ”awk I’ll never worry, it probably just an MS things” lol. But its always worth saying to your GP or MS nurse, just to even keep a wee note of it in the mean time, incase things get worse or it happens again.

I hope this is somewhat helpful.
Let me know how you get on. πŸ™‚


Anonymous
3 years ago

Cheers LadyCaroline, I’m thinking it probably is a relapse now as I’m using my left for anything heavy now. The muscle weakness in the back of my arm and shoulder blade is my leftie, got a specialist physio in a charity in Glasgow that I go to sometimes, was back in April I saw him about that arm and I try and do the exercises (when I remember!) which did help that arm a bit.

I know what you mean about being dismissive! my ms nurse has said to me I’ve probably ignored a lot of relapses that weren’t as severe as my worst one a couple years ago, which gave me a neck lesion, that was a horror with skin numbness from the neck down and a lot of pain. I’ve only had a little bit of transient numbness (prob pseudo) since then so I guess this is a new relapse but I’ll see if I can get into see my physio this week just to make sure it’s not mechanical

My nurse is lovely and told me to trust my own body, if I feel something funky is going on it probably is. I don’t take steroids so have ignored mild relapses for the most part. Now I remember though I do have some nsaid naproxen I could take just now πŸ™‚

Btw I see you’re in ScottishMSers group, give me a shout when you come to Glasgow! πŸ™‚


gemma1988
3 years ago

My first symptom was a numb shoulder which spread all down the left side of my chest … This happened after I slipped on ice so my gp put it down to a trapped nerve … After weeks of going back saying that’s its spread further he sent me for a MRI and referred me to a neuro .. MRI come back with some areas of inflamation & that I’d got a chari malformation (that’s another story) .. Neuro said suspected MS but also Could of been a 1 off I then got optic neuritis and was admitted to hospital had some more text And 2 more MRIs and that’s when they told me MS .. For some reason it still came as a massive shock…and still trying to come to terms now (this all happened within the last 12 months) so interesting reading everyone’s stories


denisa
3 years ago

@gemma1988 – it’s funny that I almost had the same “symptom itinerary” as you, but the optic neuritis came first, then MRI and discovery of MS and Chiari, and after these two I had a partially numb area in my right shoulder-armpit, numbness that spread to my back and a bit up to my chest. Same as you, thought it was a trapped nerve, the resident doctor told me that this symptom is not specific to MS, and that it is strΓ’nge it happened (although I read online that it IS kindda specific :)) ). So, I was wondering: is the Chiari anyhow involved in MS?

@sj-low – could I have had a relapse with that numbness in my right shoulder?


Anonymous
3 years ago

@denisa woah I’d never heard of a Chiari malformation, that’s rotten for you πŸ™ I’m thinking maybe the doc said in this instance it’s not specific to the MS as that could be causing the numbness instead. Either way you have numbness and that sucks πŸ™ it’s a horrible feeling not feeling! Hopefully it will clear up for you soon x
Optic neuritis and some other eye problems are pretty specific pointers to MS but there is a lot of stuff that could also have other causes, makes it very difficult for us. I wonder if there is anyone here who has also had a stroke but put it down to their MS? Or also developed diabetic neuropathy and put it down to an increase in MS pain?


gemma1988
3 years ago

Denise, I see a neuro surgeon for the chiari they not connected at all he told me I was most probably born with this although at first he thought I didn’t have MS that the symptoms were from the chiari (this was when 1 of my scans showed the inflamation had cleared up) he offered me decompression surgery for the chiari which at 1st I was going to have but when I had optic neuritis and there was new leasions on my scan he said the surgery could upset my MS so I’ve decided to not have it..I’ve spoke to a few people who have a chiari and most people are born with this…mine was an incidental finding, although the symptoms of a chiari can be very similar to MS but you wouldn’t have the inflammation that shows up on a MRI.
I don’t think I have any symptoms from this but can never be sure..what did your Dr say about it? Xxx


denisa
3 years ago

@gemma1988 – hmm, same here: incidental finding after my MRI. The neuro who analysed the scan told me nothing about the Chiari, but the MS specialist said that it had nothing to do with MS, probably because I also had a few brain lesions. So far they diagnosed me with CIS, as I only had one neurological episode. They did not give so much attention to the numbness I had in my right armpit this August. They said it could be from my MS, but they did not treat it as a relapse or pseudo-relapse. I can’t wait to have my second MRI, to see if there are any changes on my brain πŸ˜€ On Friday I’m going to see my neurologist apparently to discuss my LP results and some other issues.

@sj-low – fortunately the numbness faded after about 2 weeks more or less. It faded gradually, from almost pain with no feeling in the area (proud I could live that – NOT!) to tingling sensations an finishing with a small itch. It felt like I had sunburn, and anything could give me discomfort: showering, antiperspirant spray, touch, clothes. But since I was on vacation, I chose to ignore it, take painkillers and enjoy my time at the medieval festival and visiting the wonderful city of Sibiu :)) Since then, I only had one minor numbness incident, in my left arm little finger, due to Stress from redecorating my studio flat. OH, and slight pseudo-flares in my right eye as my period aproached (increased body temperature).

All that aside, who else is excited to see the third part of THe Hobbit? πŸ˜€ Happy Holidays guys!


cameron
3 years ago

I was beginning a mountain walk and couldn’t understand why I suddenly couldn’t lift my right leg up. I was having to grip the knee of my trousers to lever up the leg. It just wouldn’t work. Minutes later I fell. I picked myself up then fell again, this time badly. It ended up with my being carried off the fellside. The dx came later that year, but I had known immediately it wasn’t anything trivial. A neurological sensation has no parallel, seems to me. Frightening.


goofygraffix
3 years ago

Fell on my caboose while coaching my daughter’s soccer* practice back in ’08. That night woke up to a weird numbness in both legs that stopped at mid- thigh. Thought I had slept wrong or something at first, but when the numbness progessed to my waist a couple of days later, I thought “Hmmm, maybe that fall pinched a nerve…” Had an MRI on my lower lumbar done sans contrast — results inconclusive, but my G.P. thought the same thing I had and said not to worry. It wasn’t until I had a case of double vision — I looked like a fish — in May that the ophthalmologist said “Umm, you’ve got something going on with your brain**. Your choices are brain tumor, stroke, or MS. An MRI will tell us the answer… oh, and have a nice day!” Given the choices, I was actually rooting for MS (and so it was, and the rest is history…) πŸ™‚

*Sorry – football
**First time I’ve been accused of THAT πŸ™‚

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