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Just Diagnosed, questions?!

Hi everyone, got diagnosed with remitting relapsing ms today, did have a lp and a blood test, and spine and head MRI, plus an MRI was used as a reference from four years ago when another neurologist said I definitely did not have ms, even though they could see leisons. Anyway I’m rambling. Whatever the neurologist said earlier seems like a blur, but have a few areas of concern/questions I’d be keen to get feedback on if possible .

So I got told I need to be referred to a ms nurse to decide treatment, but this could take a month, then they say it’s good to start treatment asap. Is waiting a month too long, is this normal?

Then the neurologist was asking if I have any further symptoms, I mentioned I have a muscular pain in my calf, he then said that sounds like another relapse. Is every ache and pain going to be seen as a relapse?!

Finally, what worries me most is I am about to have my first child, due in August I am just so worried I am going to be limited with what I can do with him or her and that I won’t be able to support my wife. Just seems to be so much unknown at this time!

Hi Djs

I was just diagnosed with RRMS last week so I totally understand what you mean by the uncertainty. I am meeting my MS nurse at the end of July (so still a month and a half away) to discuss DMDs. At least it gives you time to have a read through the DMD information and see which would you think would perhaps suit you best.

There are so many questions, not all that can be answered, but write down anything and everything that you think of to take with you to your appointment with your MS nurse - I hear they know more than the neurologists :wink:

I too am not sure how to identify what is a relapse or what are symptoms. I suppose we will get to know our own MS in time.

For now, don’t look too far into the future. I am trying not to otherwise I will drive myself insane. I too have a 13 year old son and 4 year old daughter and worry about what the future holds but I am hopeful with DMDs and lifestyle changes it wil help.

x

Hi Lightning, thanks for commenting back!

Yes, the list of options and drugs is overwhelming in itself, in a way I just hoped they say, right here are the meds we recommend, let’s get you on them asap! I am hopeful that I will feel better after meeting with the nurse, as everything yesterday just felt like a blur.

Also, I feel that the Neurologist has basically put an ache in my calf down as a relapse, so he can offer me more medical options. I am unsure that a pain in a calf which is constant but dull in a sign of MS, feel more like a sprain or muscular!

I really don’t want to become a worrier for the future, but things like bringing a child into this world and not being able to support my wife would be a nightmare (as I was the one that pushed for a family!) and then there being a 1-67 chance of passing it down, just still all quite raw at the moment!

Thanks, Dan

hi djs

try not to worry and get stressed.

a month is very normal for an ms nurse appointment.

meanwhile read up on the DMDs because you will be asked to decide at the appointment.

the ms trust has excellent information about these drugs.

as for your imminent new baby, relax, do what you can and don’t beat yourself up about what you can’t do.

cuddles are easy and they provide you with the best therapy ever!

talk to your baby because they begin to recognise phonemes from birth.

phonemes are the sounds which language is made of.

so if baby says “ahhh” that is the very early stages of speech.

help baby to explore his/her environment.

enjoy it!!

carole x

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Blimey djs, I didn’t think they did that whole ‘you have a couple of lesions but you don’t have MS’ thing anymore. It’s precisely what I was told but that was 21 years ago, and 5 years before my actual diagnosis.

To get to see an MS nurse within a month is not too bad I don’t think. And you’ll start a DMD soon after that hopefully. These are the two links I’ve just put on Lightenings thread: https://www.mstrust.org.uk/understanding-ms/newly-diagnosed-multiple-sclerosis This has some great information useful for the newly diagnosed. Also https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid It is useful to have a good idea of the DMDs, their relapse reduction rate and the potential side effects.

For many year after diagnosis, I was very well and I’m sure that once you get started with a decent DMD that suits you and your lifestyle, you’ll be the same.

Enjoy your new baby when s/he arrives.

Sue

Thanks Sue/Carole for the advice. I am sure I will be back here asking for more advice, one thing I am now starting to think is relapsing ms isn’t in any way a death sentence so that is really something and medical advances seem to be happening all the time. Yes. I am unsure if I should be annoyed that there was no diagnosis after the first scars were found on my brain, especially when this was put down to normal agein!

Also, it is weird as (for my sins) I am a big Neighbours fan, and last night was a video or Karl Kennedy explaining remitting MS which I quickly recorded. It’s mad how things line up in the universe!

In terms of being annoyed, in your case I might feel a bit peeved, depending on how you’ve been over the past four years. The problem for you is that you’ve potentially missed 4 years worth of DMDs. But then it’s possible that at the time you’d only had one relapse so strictly speaking might not have qualified for DMDs anyway.

In my case, 21 years ago there were no DMDs available. And the beta interferons and Copaxone only became available on the NHS in 2002. The year I was finally diagnosed. So I didn’t actually lose out on drugs. And on the positive side, I took a lot more risks professionally and personally during that 5 years I was undiagnosed. Which in retrospect I was glad of. So when I finally read the discharge notice sent to my GP that said ‘evidence of a demyelinating disease … but we won’t mention MS unless she does’, I was furious. In fact they had mentioned MS, they’d said I didn’t have it!! But looking back now, I’m glad I didn’t know.

I hope that you can find some positives from the four years hiatus between initial testing and diagnosis. Perhaps simply that you’ve been able, with your wife, to enjoy the planning and preparing for the new baby.

And as you’ve said, there are many more drugs available today. Back in 2002 there were four. I think there’s about 14 now! Which isn’t taking into account all the drugs in development.

Feel free to ask any questions you have about drugs, symptoms, relapses, general life with MS. There are lots of us about who are happy to share experiences and whatever knowledge we have gained over the years.

Sue

Thanks Sue, well to be honest I have now looked back on the past four years and thought, that time my leg was sore for no reason or I had a shooting pain or pins and needles in my little finger, could that all have been MS related? Though, as everything has been rather minor I would never really know - I just put it down to getting old!

I can see now the worry being in the future that any ache or pain will make me think I am about to have another relapse, I went to the gym yesterday and today I seem to ache more than normal, the brain starts thinking - is this MS related, while I am certain it is just general gym pains. Do you always go on thinking like this, or is it just because it’s all still new to me?

I had my first appointment with neurology I’m no closer to feeling better about this diagnoses. The consultant didn’t have my notes all he did was request bloods still in the dark what type of MS I have. Feel like I’m gonna have to just grin and bare it

It’s a bit of a habit amongst us MSers to expect every little thing to be MS related. So, even after years I’m afraid you’re likely to think ‘oh, MS strikes again!’ And we always have to remind ourselves and each other ‘not everything is MS’.

So I’m sorry, but that’s probably going to be constant.

Sue

Damn! Ahh well at least I know it’s normal to think like that! Thanks Sue!

Hi Djs, welcome.

i am still quite new to ms. (Just over a year).

if I am honest, I still struggle emotionally with the ‘what ifs’.

but what I wanted to share, is that in the last year the only thing that has changed for me is how I see life.

My fear of what’s around the corner is lessening, I am on a DMD and I have not had any relaps which have affected my life.

I am just as able to work full time, go on holiday etc,

Djs

it is very natural to wonder if everything is part of the GIT that is MS. It is also natural to go through the roller coaster of emotions when anything happens. I have 27 years experience with (first) RRMS and now SPMS but I can still be surprised / scared / and wrong footed by various symptoms, I once was terrified by a visual issue which turned out to be a painless migraine. (how my MS nurse and I chuckled after a panicy phone call)

My main suggestion to people recently diagnosed is to build a support team of family / friends and medical professionals to whom you can turn when you feel the need. Also coming to this forum can give you access to a valuable source of experience and empathy.

All the best

Mick

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Thanks all. Is it normal for the letter from the neurologist to say " I am not able to identify and other cause for his symptoms and so I have given him the diagnosis today of relapsing/remitting multiple sclerosis" even he does not seem sure, or is that just medical speak to cover themselves, or am I just clinging on to something hoping it’s not true.

Sorry probably is normal, just wish they’d have said, he has white matter lessions on his brain and spine and 9 white cells and unmatched oligoclonal bands so we have confirmed it’s rrms, not leave doubt in my mind!

Cheers Dan

Great advice thanks Mick. Have already told my closest group of mates and family who are all asking questions, doing their own research and have all said they’re their to help etc if I ever need it which is of great comfort! Still hoping that I’ll get on some meds and hopefully not relapse for many years!

Maybe just necessary within his hospital to cover the arses. And strictly speaking it seems appropriate. If the job of a doctor is to consider one’s symptoms, examination and test results and rule things out rather than to begin with a diagnosis, then the wording might sound a bit flimsy but is actually the right way of approaching a diagnosis.

Sue

Djs, I’m assuming that rather then giving you that diagnosis because they can’t find any other cause for your symptoms that the tests you’ve had done, mri and lumbar etc, the results were consistent with findings in MS. Otherwise it would just be idiopathic or symptoms of unknown origin.

Thanks all, yes you are all correct, just the wife has doubts and is asking about getting a second opinion etc!