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Terrified of multiple sclerosis diagnosis

48 replies

ShinySloth · 14/08/2018 12:18

I have a neurology appointment in a month's time, and I'm convinced it's going to lead to an MS diagnosis.

For the last three weeks I've been experiencing numbness and tingling constantly in my hands and feet, sometimes moving to other parts of my body too. From time to time I'm also getting muscle twitches, a feeling of cold water being poured on my skin, tinnitus and the odd headache. Sometimes I feel weak and shaky too.

Usual blood tests done by the gp came back fine. Trying not to get ahead of myself but so scared. I'm 31 and have just had my first baby. Sad

OP posts:
GettingTooOldForThis · 16/08/2018 22:32

First symptoms were double vision and slight weakness on one side. I did realise after that I’d been having tingling and numbness in my hands for a while.

I was initially diagnosed with glaucoma, then second time I had double vision they thought I had had a stroke.

Third time diagnosed with another stroke and fourth time I was told possibly MS.

I was only diagnosed after several MRI’s and a neurologist appointment, three stays in hospital and several months off work.

So it’s very early stages for you and there are so many other things it could be so don’t panic yet.

I am great now. Back to work and going back full time in two weeks. I go to the gym three times a week and do most of my house work. I have two children and do sports drop offs etc.

Had to stop driving for around five months due to double vision but once that was under control I was fine to drive. DVLA are deciding whether I need a medical licence or not.

The only issues I have now are fatigue and weakness on one side.

Good luck and try not to worry as that can make it worse.

Pericombobulations · 16/08/2018 23:29

If you read up about MS, you will quickly learn that every MS person has different symptoms and progression. Its the most unpredictable illness there is.

My pathway started with pins and needles / tingling in my left leg that got diagnosed as sciatica. It was only 6 months later when it "spread" to my right hand, that a Dr took me seriously and moved me onto a neurologist "to rule things out" unfortunately two MRI's didnt do that.

For me, it took less than a year from the first tingling to diagnosis, but the consultant pointed to a bout of labyrinthitis I had had a couple of years earlier was a relapse. It was a surprise to be told it wasnt in my mind for the first time in years.

Stillnotready · 16/08/2018 23:40

No personal experience but one of my closest friends was diagnosed at 26.
Thirty years later she is still working full time, and has a teenager.
She’s had flare ups, but manages her energy levels sensibly, and takes care of her diet and lifestyle. She is definitely one of my healthiest friends but still enjoys good food and a cheeky glass of something given the chance.

Interested in this thread?

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9amTrain · 17/08/2018 00:39

I second getting your actual levels. Ask for copies of your bloods OP and post them here if possible.

Hubblebubble64 · 17/08/2018 00:50

32 years with ms, still walking working full time and raising a family. So many people have it and you would never realize it to look at them. I suffer from fatigue wobbly legs occasionally, all my symptoms are manageable. I have a couple of nasty relapses but have got over them. It is not the end of the world if you have ms although I understand it can feel that way.

Nat6999 · 17/08/2018 01:22

My ex husband has MS, he had been having problems with one of his legs giving way, the doctors said he had a trapped nerve in his back. He started with sore eyes & slightly blurred vision when I was pregnant with our DS almost 15 years ago, we put it down to him being tired with working shifts & trying to get our home finished before our DS was due to be born, I went to work as normal one Monday morning leaving him at home to go on afternoon shift, he was going to collect some baby stuff we had ordered from Meadowhall on his way to work, as he was parking up his vision started going, he managed to collect the order before his vision went totally & he had to ask for help to get someone to collect him & the car. He was taken to hospital who at the time thought it could be some type of stress related migraine & sent home, our GP referred him to the rapid stroke assessment unit who ruled out a stroke & we spent a month going backwards & forwards to different clinics to try & get a diagnosis before we paid to see a neurologist privately who ordered an MRI scan for the next day which was Christmas Eve, he had the scan first thing in the morning & by lunchtime we got a call from the consultant to give him a diagnosis of MS & a prescription for oral steroids to get him through Christmas, we got an appointment to the MS clinic for the New year. His vision didn't come back through Christmas & as our DS was due only a month later we were really panicking that he wouldn't be able to see when he was born. At the MS clinic he was put on intravenous steroids for three days, on the evening of the second day, his vision came back as quickly as it had gone. He still had problems with walking & coordination, he had intensive physio, his speech became a problem as he knew what he wanted to say but the connection from his brain to his mouth wasn't working, we had a couple of weeks where he had tantrums like an angry two year old, he tried to put something away in a cupboard, could see that there wasn't space to put it but his brain kept on telling him to put it there, I found him throwing all the stuff out of the cupboard & collapsing on the floor crying in frustration. He was put on Beta interferon about four months after he was diagnosed, that really helped & after a year of having repeated relapses his MS settled to a pattern of only having a relapse every 14 months which was quickly sorted with steroids, we went on a course for newly diagnosed patients to meet people who had been diagnosed for some time, they gave us hope that it wasn't all bad news, we would have a life again.

He has never worked since he was diagnosed as he had a job working in heavy steel industry where a mistake or slip in coordination could kill someone, he became a house husband & cared for our son, we bought a caravan & spent most of our first year as parents there, going fishing & for walks, we learned to take our time & for him to rest when he needed to.

It wasn't his MS that ended our marriage, we just had grown apart & wanted different things, it's 15 years now since his diagnosis, he has had some bad relapses that have meant time in hospital, he's had to have plasma exchanges & was put on a trial for Alemtuzamab, unfortunately he wasn't a success case, he is now in a wheelchair & lives in an adapted bungalow but he has a dog & gets out every day with him, he drives an adapted car & our DS shares his time between us.

jalopy · 17/08/2018 04:44

Can I just mention that anxiety and stress can cause a lot of unpleasant physical symptoms.

Could that be a possibility?

MargaretDribble · 17/08/2018 05:30

DD was diagnosed with MS at 25. I have a cousin with MS who at that stage was already in a wheelchair. My mind of course leapt to the worst case scenario, with DD unable to walk, care for herself etc.
In reality her disease has progressed more slowly. After 16 years she still works part time, can walk but has an adapted motability car, and has been on numerous medications, but still manages to enjoy life.
Try not to let your mind jump ahead. Your neurologist may be trying to eliminate MS as a cause rather than expecting a diagnosis.

QueenCity · 17/08/2018 05:56

Did the GP check your vitamin D level? I had similar symptoms and it turned out I was very deficient in vitamin D.

Bluesheep8 · 17/08/2018 06:32

@shinysloth no, it hasn't and doesn't impact my life at all (touch wood) and no one would ever know I have it unless I choose to tell them, which I don't very often. For example, I started a new job 4 months ago and because there wasn't a direct question about it in the application, no one knows. Even my neurologist said last time I saw him "if someone saw you in the street, they'd never know you had MS, in fact I'D never know and I'm an expert" I won't lie though, I do get some strange sensations and I do get very tired but that's just part of me as far as I'm concerned, and who knows how tired I'd be any way iyswim. I do appreciate that I am very lucky but I think it's important for you to know that it's unique to each person and there are some positive stories. Good luck

justcontemplatingsomething · 17/08/2018 06:55

I just wanted to add that the numbness is really common after having a baby. It happened to me after I had my first child (didn't happen with the second) and lasted about 5 or 6 months. There were days when I could hardly get a milk bottle top opened and it was horrible. But it slowly disappeared completely.

Bluesheep8 · 17/08/2018 07:17

Just to add, as a pp said, my earliest symptom was probably labyrinthitis although people can have this without it being MS. Then around 2 yrs later I had what turned out to be optic neuritis quickly followed and accompanied by total numbness, so much so that I could stand in the shower and not feel the water, and weakness in both legs. The funny thing is, I've had funny sensations all my life and just thought everyone had them iyswim. Anyway, gradually everything returned to normal-eyesight,numbness and weakness and apart from a bout of labyrinthitis in 2005 and uveitis in 2015 (which may or may not have been MS) it is "quiet" and "behaving benignly" according to the neurologist, and as I say, today no one would ever know.

forbiddenfruitcrumble · 03/09/2018 13:26

Shinysloth, how are you doing? Hope you're feeling better and enjoying your baby x

ShinySloth · 13/09/2018 16:06

Hello - everybody was so nice before so thought I'd come back and update after my neurology appointment today.

Overall it was positive. The neurological exam went well. I told the neurologist that I was scared of MS and she said she would be surprised if it was that, as my numbness is localised to quite small and specific patches and the neurological tests she did were normal.

However she has referred me for an MRI of the head and neck. I'm still worried, which is probably due to my anxiety. I'm scared I downplayed some of my symptoms, as several of them are not constant but come and go...

Trying to put it all out of my mind until the MRI now though. She said I'd get a letter from her after it - does anyone know what form that would take? Would it just bluntly state bad news?!

OP posts:
forbiddenfruitcrumble · 14/09/2018 11:35

Shiny thanks for coming back, I've been thinking about you, and remembering how stressed I was when I went through the same thing.

So a Neurologist has told you your symptoms are not consistent with MS, the tests indicated you do not have MS. You should listen to her, she is telling you that you don't have MS!

When my friend was diagnosed with MS she had numbness but it was so extensive she couldn't walk for days.

Are you doing some exercise? I know it's tough, as I remember you have a new baby, but this will work off adrenaline. For me, the stress caused the symptoms which caused the stress, and so on, in a vicious circle that was only helped by exercise and yoga...

Rebecca36 · 14/09/2018 12:01

You poor soul. You are not alone in being afraid you have MS, I worked in a neurology department and many patients believed that too. However a great many conditions present with symptoms such as those you describe so in all probabilities you do not have MS. In fact you may have something not at all serious.

I hope you are being referred to an excellent neurology unit and look forward to hearing that you have been reassured. All the very best,

ekkmlk · 21/10/2020 17:37

Since I consulted with the doctor who prescribed individual treatment for me, I am not at all worried about this, so I advise you to do the same.

ekkmlk · 23/10/2020 16:10

I would like to complete my comment. I used the drug, which you can read more about here. This is a fairly common and really serious problem, so I hope that you will be fine. Take care of your health!

ekkmlk · 23/10/2020 17:35

I completely forgot to attach the link, who will be interested to read about it onlinevgraaustralia.net/prednisolone/

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SB1990 · 20/01/2023 06:21

@ShinySloth i know this is old but wondered if you ever got answers x

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