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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.

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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!

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.

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.

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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.

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.

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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.

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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.

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.

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

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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.

Geoff

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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!

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

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 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.

Mick

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

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

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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

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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.

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