Terrified of multiple sclerosis diagnosis

[ShinySloth]

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.

It may not be that diagnosis. Whatever it is, it'll be better to be fully informed, so that you can deal with it. How old is your baby? Is it anything that's been brought on by pregnancy or birth?

I'm not surprised you're scared, hopefully you are worrying unnecessarily. A month is a long time when your mind is going into overdrive. Did the GP check your B12 levels? A lot of the symptoms you've mentioned are symptoms of pernicious anaemia. I had them before I was diagnosed with PA. Hope everything goes okay for you .

My baby is 11 weeks old and symptoms started 3 weeks ago, although I had carpal tunnel towards the end of pregnancy which could have been connected?

I just wish I could focus on my lovely baby instead of spending my time worrying that she's going to have a mum who can't do everything she wants to with her.

@sulflower, yes the gp checked b12 and said levels were fine. I was so hoping that the bloods would provide an easy answer.

I've got it. I'm a peadiatric nurse and still work full time. It's hard going sometimes but it's really not the end of the world. The new immunotherapy treatments are very effective.

@Toddlerteaplease, thanks for your reply! Do you mind me asking you a couple of questions? How old were you when you were diagnosed and has your health deteriorated much since then? Do you have any children?

Is this the first time you've had any of these symptoms? MS can't be diagnosed after only one incident so it's unlikely to lead to an MS diagnosis if you've had no symptoms previously.

My DH is currently being assessed for MS. I know how difficult it is. It's a long, stressful process. Try to enjoy time with your baby.

@TooMuchEyeliner, first time I've had them consistently although I've had the odd incident of fleeting nerve pain in my toes in the past and numb fingers in pregnancy.

How is your DH getting on?

@ShinySloth he's doing ok, thanks. It's been going on for 9 years so we've learnt to just get on with things but it was hard to start with. He's been admitted to hospital previously, had a few MRIs and various other tests. Still awaiting diagnosis though because they can't diagnose until after at least two incidents of symptoms and of course NHS waiting times don't help. Hopefully things will get sorted much more quickly for you

I was diagnosed almost 20 years ago. I was 24. I have worked full time ever since and have never been prescribed any treatment. The thing with MS is that it's very unpredictable and there is no definitive prognosis but a diagnosis doesn't have to be the end of the world. Sorry if this is a bit short but I'm at work at the moment and just wanted to respond!

@ShinySloth, I was 31. I was a healthy volunteer for a research study at my local uni. I had an MRI scan as part of the study. It was a shock at the time. But little things I thought were normal were actually MS related. I am glad it happened that way. I had no stress of waiting for a diagnosis, and when I had my first relapse 18 months later I knew who to contact.
I then had 4 relapses in a year. But things massively improved when I was started on tysabri infusions. My consultant then wanted a guinea pig for a new treatment that my hospital had just started offering, alemtuzemab. I had a blip this summer, hopefully due to the heat. And ended up back on crutches for a while. But I'm usually very well abs work 12 hour shifts on a busy paediatric ward.
I don't have any children.

I have it. Diagnosed in 2010, just before my 30th. I am still working full time and have had no major set backs. One relapse in 2014, small flare ups since then. Latest MRI shows that it has been stable for the last number of years. It is not a nice diagnosis to get, but isn't a death sentence. I now know several people w/ MS from age 20 - 65+ and l'd say 90% (that I know) lead "normal" lives with some adjustments.

Do you have a carbon monoxide detector OP?

I get that feeling of cold water on my legs, its very odd. Also get numb/hit with a hammer like painful fingers. Im also 31 but I have essential tremor so have just thought my nerves are buggered.

Bumping this thread

I was diagnosed earlier this year. It takes quite a long time to get a diagnosis as you need two distinct incidents.

I work and after my diagnosis and starting treatment have had no real problems except for having fatigue.

The neurologist will likely send you for an MRI scan to see if you have evidence of lesions.

I have similar symptoms, and was assessed and don’t have ms, so it’s not a done deal. I have been diagnosed with ME, which as far as I can tell means “we don’t know what’s wrong, but some thing is.” I’m still managing to work and parent, so chin up.

It's funny reading your title took me back 15 years when I became very worried that I had MS. I had weird tingling, pins and needles, twitching, numbness, all the things you describe.

The more I worried, the worse it got.

It turned out I definitely didn't have MS. I was stressed and apparently excess adrenaline can wreak havoc.

The fact that your body has just gone through giving birth might also be relevant. Presumably you're very tired, and that always makes you twitch (well, it does me).

I have zero medical experience but it doesn't seem very likely to me. You are only displaying the vaguer symptoms, not the 'big' ones and basically those symptoms could be about a million things.

In my case (which was in Spain), my doctor referred me to a neurologist who took my bloods and told me they were perfect so it was impossible that I had MS because something would have been off. I was so happy, I went to visit some friends for a weekend and lo and behold, my symptoms faded away. I do realise he wasn't truthful, but I can't help feeling he did me a favour!

I know this is unsolicited advice from a non-medical person, but if you do some exercise you will burn off adrenaline and maybe see an improvement. I really hope this doesn't sound patronising, it's not meant to be. I nearly lost my mind when I was in your place.

My father had MS he had the progressive one where you don’t really have relapses and remissions you just get steadily worse. There was great work done which offers a lot of hope andbtgevtreatment is excellent. I had similar symptoms tonyou and a familial link to ms so I saw a neurologist and he said ‘no one can guarantee the future but I see no evidence of MS’ so stop stressing and think about you appointment as ruling it out not trying to diagnose you.

I’m sorry you’re going through this. It must be so stressful.

I just wanted to share that my Mum has MS, we only found out when she went blind in one eye on holiday.

That was 17 years ago, she needs no medication, has never needed any treatment, not gone blind again and can move well. She loves hillwalking!

The only slightly negative thing is that when it gets very cold (snow drifts/crazy cold north wind from Siberia weather etc) she feels a bit wobbley, but still gets out and about, so although not absolutely perfect she has a really good quality of life.

I hope it’s not MS, but just wanted to share how well my Mum has been to show there’s a wide spectrum in how people are affected.

Hand hold from me too. I was diagnosed with MS 2 years ago, and still work full time, and have a teenage Kevin.

Its not a death sentence and there are so many choices of treatments if you do have it. My only relapses were 5 years ago and 2 years ago before I began treatment.

When they were testing me, they kept saying that it could be anxiety, which I have a long history of, do you have any history of that? I hope you get positive news, but there are many of us with positive experiences.

Just wanted to second what pps have said about MS having so many different forms. I truly believe that it is unique to every person who has it. The hardest part in the beginning, I think is realising that no one can tell you how yours is going to be.

Sorry I haven't responded earlier - to be honest I felt a bit overwhelmed and had to take a step back. I've read and appreciated everybody's replies though, thank you.

@Bluesheep8, thank you for sharing your story! It sounds like you are doing really well? It must have been quite scary to get a diagnosis so young. Do you feel as if it's impacted your life greatly since then?

@HoosierDaddy, thanks for your post - it was very encouraging.

@ItsAllGoingToBeFine, no I don't - why?

@GettingTooOldForThis, thanks for sharing. Glad to hear you doing ok since diagnosis. Can I ask what your first symptoms were?

@AltogetherAndrews, thank you! That must be tough in its own way, to have such a nonspecific diagnosis. Glad to hear you are getting on with life.

@forbiddenfruitcrumble, I'm clinging to your post as I found it so reassuring! Hopefully things will work out for me as they did for you.

@Fluffyears, yes you're right, I should adopt a more positive attitude for now.

@MyPatronusIsABadger, that's such an encouraging story, thank you! Sounds like your mum is an inspiration!

@Pericombobulations, thank you, glad to hear you are still getting on ok. What were your initial symptoms? I do have a history of anxiety and have previously been on medication for it. It's never affected my body is such a physical way though so I dismissed that as a possible cause. Would love to be proven wrong!

Worth checking what your B12 levels actually are... there are lots of missed diagnoses of B12 deficiency. www.b12deficiency.info

Its ok to be overwhelmed, you're naturally worried. Best of luck