diagnosis on the way, what's next

New diagnosis and before diagnosis
1

Hello to all, hope you are all well…

Been reading your posts for weeks now and decided it’s time to join you as I am too anxious these days to deal with it on my own and my poor husband is fed up and scared, I think…

It’s all only started 4 weeks ago for me but there is more and more things happening as time goes on- started with tingling in my right leg, I went to see a doctor with shooting pain in my arms at night however (going for cervical scan in a week’s time).

It’s all progressed- my left toe feels slightly numb, my hands feel different ( I get lots of shooting pains through the night). BUT, what’s the most worrying is my wobbliness, not noticeable to a stranger I am sure but I find myself constantly controlling myself and trying to balance right as I move about. It hasn’t stopped my from doing anything so far, I have not been sick of work yet and I am plodding along ( surprisingly) but I know it’s all just a beginning although not a big distraction just yet. I find myself almost waiting for the big hit so it can be dealt with properly as I know the way from cervical scan to brain scan and diagnosis can be very long and the more I read the more I think I want to get the treatment asap, if my worst fears come true.

What would you suggest, I know it’s all unpredictable and none of you will be able to tell me what’s next to come symptoms wise, but what can I expect? I wake up every morning checking if I am still walking ( typical, I know!), so far so good in that respect, I am not weak either, but what is next? I know my question is impossible to answer and I don’t even know what I am asking really, but do I wait for the big hit or do I rush to the doctor with the new symptoms, if cervical scan shows nothing?

Thank you so much for reading. ANY answers will be much appreciated xxx

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Hi Margaret have you had bloods checked for vitamin k ?? Your symptoms sound so similar to a lady know. She had pains in back of her head shooting pains and wobbly !! Good luck anyhow x

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Hi Margaret,

I hope you don’t mind my saying, but I think you’re getting very ahead of yourself here, even assuming it is/will be MS, when issues only began four weeks ago, and you haven’t even had your first scan yet.

Unfortunately, I can’t tell you it isn’t MS - I just don’t know - but there are over 100 conditions that can cause similar symptoms, and absolutely ALL of them have to be ruled out, before MS would even be considered as a diagnosis.

Additionally, even if tests do show all the hallmarks of MS, one episode, lasting a matter of weeks, is not sufficient to diagnose. For reasons that are not well understood, some people have a single MS-like episode, which is never repeated.

As someone here once memorably put it (as told them by their neurologist, I think): “There is no such thing as singular sclerosis”. In other words, one attack doesn’t cut it, as far as diagnosis is concerned. It can’t be MS unless or until it’s multiple.

So I do not think there’s much point dwelling on what to expect from MS, when there are still at least 100 other things it might be, and you have no particular reason to assume MS, more than any of the others.

As you acknowledge yourself, even if your hunch is right, nobody can really tell you what to expect. MS is so variable that hardly any two people have exactly the same symptoms.

I just passed my five year anniversary of diagnosis. Yes, I have very poor strength and stamina for my age (49) and a lot of aches and pains that most people just don’t have, BUT there has been no “big hit”, and it’s not inevitable there will be one.

The future with MS is unknown, and unknowable - just as it is for everyone without MS, as nobody knows what’s around the corner, even though it’s a very popular illusion (delusion?) that we do.

The best advice I can give is just to take things one step at a time, and know that you will deal with things if and when they happen (almost everybody does!), but you cannot deal with them earlier than that, so there’s really no point trying. I wouldn’t get too hung up on “your future with MS”, when, at the moment, it’s just one possibility of many.

Tina

x

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Margaret, it sounds as though you are in ‘keep calm and carry on’ territory here. Is it an MRI scan of your cervical spine that you are booked in for? With luck, the scan results will provide some information to help the doctors find out what ails or at least help them to narrow things down a bit.

For now, it’s just a matter of trying to be patient, I think. It is important to try to pace oneself emotionally and not spend too much sweet life worrying about things that might not happen.

I understand that you feel anxious about bothering the GP with things that are strange but not obviously alarming. However, I think you should not be shy about flagging up any strange new neurological symptoms. Let the GP make the call over what is important and what isn’t. Neurological things feel very strange indeed, and the GP will know that: it isn’t as if you are complaining about having a head cold. So please do not be embarrassed to speak up. If the GP says that he/she is happy that you just keep a note of things unless they are biggies, then fine. But do ask the question: don’t guess. That’s what the GP is there for.

And oh yes, most people who have ever had strange neurological stuff going will recognise the business about waking up in the morning and doing a quick systems check to see what still works…

I hope that all this will soon be a distant memory for you. MS isn’t particularly common. For sure, you hear that it is one of the most common causes of disability in young adults: so it is, but that is because disability among young adults is itself such a rare thing. Hang on in there.

Alison

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Margaret, sometimes the fears and speculation are as bad or worse than the symptoms. It would be grand to know what is coming so we can prepare. I found that I could not afford the energy in guessing what might happen,so boyishly try to deal wth todays issues and only plan for the good stuff. Easier said than done. Get a nurse or doctor that you trust. Good luck. mick

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Hi Guys

Thank you all for your replies, I couldn’t get on here sooner than now as my husband is in denial and gets really upset seeing me reading anything about ms, let alone joining this site and posting!

I appreciate that it is early days and I would like to hope that things will work out in my favour but I feel like my body is under attack at the moment, for the last 4 weeks things have changed, I get crazy sensations all over my body, crawling feeling on my legs, shooting pains in my arms, numb arms waking me up every night… Just too many things to dismiss and think they are nothing. Although, I do still dream it all goes away and not come back for years, I am too young to get ill, not that any age is good for that…

I am going for cervical spine mri next week, as originally I saw my GP about the sooting pains in my arms- he decided it would be a sensible thing to do to check things out, he said then the brain scan would be too much for me and no need for that. BUT, that was then, if I saw him today and told him what has been going on, I am sure he would be sending me for that one as well.

So, my question is, how did you all go about your daily lives while waiting for diagnosis, there are some people here who are doing fine and still working, I want to believe I will be able to do it for many years to come. How do you get used to the strange feelings and pull yourself together to live and not shout to the world that you have ms…???

Tina, I must have read all your posts, tell me about life:-)

Kisses to all xx

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Hi Margaret,

I’d agree with Tina that the most sensible thing to do - if you can (and I know it’s really hard) - is to remember that at this stage, there’s no compelling evidence to suggest it’s MS.

Do you mind me asking who ordered the MRI, and whether you’ve been referred to a neurologist? From your post, it sounds as if it was your GP who ordered the MRI. If this is the case, it might be possible that the GP suspects something other than MS, because usually, if GP suspects MS, they’ll refer you to a neurologist for physical exams, who may then order scans. I’ve never heard of a GP ordering an MRI for purposes of MS investigations, without first referring the case to a consultant neurologist (that’s not to say they can’t or don’t - it just seems unusual). Also, I believe that, where MS is first suspected, it’s most common for an MRI of the brain to be authorised- or and MRI of brain AND spine - rather than spine alone. I’m just wondering whether it’s possible that there might be other things that the GP is suspecting? Degeneration of discs in the cervical spine can result in symptoms similar to some (though not all) of the symptoms you describe - eg numbness, tingling, altered sensation and weakness in the neck, shoulders, arms, and even fingers.

I’m not saying you don’t have MS, or that you shouldn’t be concerned. Just that at this stage its very early days, and unless you’ve been told by a medical professional (usually neurologist) that they suspect MS, you might be jumping the gun - and even if they suspect MS is possible, it’s still just that - a ‘possibility’; you still need tests to rule it in or out, and there are lots of other possibilities too. So it is far from a ‘done deal’… and at this stage, worrying about the ‘big one’ that might catch you out - though a completely understandable and human reaction to what you’re going through - is again, possible jumping the gun. Remember, there are lots of conditions less serious than MS, that produce similar symptoms. I’m not trying to undermine what you’re going through - just trying to reassure you that there are other possibilities.

Your test is soon, which is good news- so just hang in there. And try not to panic (and honestly, I know that’s so much easier said than done).