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New Diagnosis

Hello everyone

Firstly, just let me say a quick thank you to everyone involved in this site. It’s been a big help for me over the past couple of days. Secondly, there’s no real point to this post other than to give me a chance to speak to people who understand about what’s going on with me.

I’ll start at the beginning, which was in the middle of June when I was on my stag do in Portugal. We played five-a-side and during the match I struggled to focus properly on the ball and needed to squint in order to be able to see what was happening. I didn’t think anything of it, given that it was hot and I’d had a few beers the night before.

Fast forward a few weeks and I woke up in the morning with the room spinning around. Having had an inner ear infection when I was younger, I booked a doctor’s appointment to make sure that wasn’t happening again. He told me there was nothing wrong with my ears but that it might be worth using a nasal spray called beconase (sp?) I did that, but nothing changed and over the next week or so I began to experience more feelings of the room spinning. The best way I could think to describe it was as if I’d just got off a boat and hadn’t got my ‘land legs’ back.

My GP was concerned enough to send me for a CAT scan and when that came back clear he suggested that he would like me to go to see a neurologist, especially as I suffered a bout of double-vision one night when at a wedding. That was towards the end of July and I’m getting married on September 8th, so I was concerned when he said that the waiting list to do so on the NHS was around twelve weeks. I was fortunate enough to have some savings and so paid to go private.

Initially the private neurologist thought I had migraines and told me that if I gave up caffeine the symptoms would clear, but that he wanted to send me for an MRI in order to rule out an aneurysm. That was on Wednesday 1st of August and I had my MRI the following day. On Wednesday the 8th I had my follow-up appointment and that’s when everything changed.

I walked into his room and he said, “I’ve just been speaking to your radiologist, you have multiple sclerosis”. Obviously it hit me and my partner for six and he told me that he wanted me to go and see a specialist. In the meantime I spoke to a GP friend of mine and a friend of my cousin who is a neurologist himself, both of whom said that he couldn’t diagnose me without at least doing an MRI with a dye injection and that I hadn’t had multiple episodes, so it wasn’t going to be MS.

I met the specialist on Monday of this week and he told me that it is MS. He said we can do all of the tests etc but in his experience and by looking at the scans he’s confident in calling it multiple sclerosis and that the tests will merely serve to confirm his opinion. It’s been a whirlwind fortnight and I’m absolutely all over the show, to be honest.

I’m full of concerns at this stage, not least of all because my vision problems haven’t abated and have, if anything, got worse. I’m obviously finding myself wondering whether that means that it’s primary progressive rather than relapsing-remitting. I’m also worried because the vision issues I’ve had don’t seem to match up with the symptoms of optic neuritis or any of the other vision problems that MS sufferers tend to get.

I’m struggling with my balance and weeing a lot more than usual, whilst also having vision problems all of the time. The tricky thing is that the vision issues are hard to describe because it’s not double-vision, nor is it blurriness or anything else. The best way to describe it is as though the thing I’m looking at is ok but things in the background seem disconnected from reality, somehow.

It’s still early stages for me, so I’m gripped by fear about what’s still to come. Is it going to be PP or RR? Does the fact that my vision and balance problems haven’t shifted at all mean that it’s not going to go away? I had a course of steroids but they made no difference.

Add into all of that the fact that I’m getting married in just over three weeks and I’m sure that you can imagine how my head is absolutely pickled right now.

As I said in the intro, I’m not sure what this post is for. I just wanted to express myself somewhere that maybe someone else might understand what I’m going through.

hello zadian

first up, congratulations on your upcoming wedding.

second - don’t panic.

most people are originally diagnosed as rrms (which can in time become secondary progressive but probably not ).

your gp friend and cousin who is a neurologist are incorrect.

i, myself was diagnosed after only one MRI.

looking back i have had symptoms since my teens, was diagnosed aged 50.

i have a feeling my MRI must have lit up like christmas!

have you been given a follow-up appointment?

you should be offered one of the DMDs and be allocated an ms nurse.

it will be useful for you to identify individual symptoms so that you can deal with each one.

bladder and constant weeing can be dealt with at the bladder and bowel clinic. you can self refer or ask your gp to do it,

eyes may be best to see an opthalmologist but ask your ms nurse for advice.

now you have the beginnings of a plan of action but always remember that stress is extremely bad for anyone and for msers it makes the symptoms worse. so teach yourself some relaxation techniques.

deep breathing works for me. inhale 2,3,4 hold that breath 2,3,4, exhale 2.3.4.5.6.7.8. (blow this breath out).

it is also the basis for many forms of meditation.

i hope you have calmed down a little.

if i may give you a tip - don’t let your life become a never ending cycle of medical appointments.

stick some fun time in there!

carole x

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Hello Zadian

You’re right in saying it’s early days. Basically, your first symptom was only 2 months ago and here you are walloped with an MS diagnosis.

In some ways, it’s better to have things happen this way rather than dragged out over months or even years while you worry yourself stupid (just read some of the posts on the newly/un-diagnosed board if you doubt that). But it’s a very, very short time scale to go from full of life and health to an MS verdict.

But. Keeping things in perspective, less than 2 months since symptom one does not mean it’s primary progressive. It generally takes weeks or months for a relapse to abate. And that’s if you have a course of high dose steroids, which you haven’t (and at this stage, I wouldn’t - they work best when it’s the first few days of the relapse symptoms starting).

So, looking at the statistics, only 15% of people diagnosed with MS are primary progressive. So that stat is on the side of you being RR. And assuming you are indeed RR - which btw, the neurologist is likely to assume in the first instance as it’s only after at least a year of a relapse not remitting that s/he would assume progression - then the good news is that there are lots of disease modifying drugs now available to prevent relapses. At the last count 12, or 13 if you count Ocrevus.

I’m definitely not saying ‘oh it’s no big deal’, or that you need to ‘accept’ it, in fact I’d say the reverse is true, do a fair amount of stamping your feet and yelling ‘why me?’ And ‘it’s damn well not bloody fair’. Also, you need to talk to your fiancé. Not that I’m suggesting anything would get in the way of your wedding, just that she also needs time to wrap her head around your new reality.

Do plenty of reading, from reputable sources, ie the About MS button on this site, or the MS Trust site. Have a look at https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid to see what treatments you could be offered. (You wont have totally free choice of disease modifying drugs, but it’s a good thing to be familiar with them.

If you get started with a good DMD soon after the wedding (don’t let potential early side effects ruin your wedding, but the6 probably would only be early side effects), you may find relapses are few and far between thereafter.

And don’t worry about the symptoms you are still living with. Give them time and they should diminish. Remission from relapses often happens so slowly you don’t even notice the symptoms are getting better until one day you’ll suddenly think, ‘oh, my eye / leg / whatever is better!’

Good luck, keep talking to us on the forum and we’ll do our best to help out.

Sue

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You should contact the Guinness Book of Records. I didn’t think it was medically possible to get a diagnosis of MS that quickly.

And if the neurologist, the radiologist and the specialist are so convinced that you do have MS why can’t these whizz-kids tell you which type it is?

Have you looked at the MacDonald Criteria? This is the complex diagnostic tool that is required for a diagnosis of any type of MS and I find it hard to believe that it can be done in a week.

Take a deep breath and get a second or third opinion. Preferably one that takes more then a few days.

Regards,

Anthony

Hi Carole

Thanks so much for taking the time to reply. It really as an awesome community here and I can imagine it makes such a difference to people like myself who are just getting their heads around stuff.

My GP called today with a potential follow-up appointment on the 6th of Sept, which I’m unsure about taking with it being so close to the wedding. On the one hand I want to get the ball rolling ASAP, on the other I’m going on a mini-moon straight after and therefore don’t know how much of anything can be done at that stage anyway.

It’s also complicated slightly by the specialist I saw privately telling me he wanted the GP to refer me to him on the NHS, but my GP not getting the option to do that because of the daft system they use.

Thank you for your tips. I’m generally not much of a stressful person, though I admit this last fortnight has put that to the test! I’m also a self-employed writer, so there are now some money worries that are catching up with me. I do try to do a bit of mindfulness and meditation and will continue that even more now. Hopefully that will help me to stay relaxed and calm as much as possible.

I’ll definitely try to take the tip about it not becoming an endless cycle of hospital appointments on board!

x

I think most of us on here understand what you are going through. I can well remember the sheer sense of panic when I realised that my initial symptoms were indicative that there was something seriously wrong. (At this time I had never heard of m.s. and if I had it hadn’t registered!) It is very likely your present symptoms will calm down and things will improve. My guess is the neuro will be waiting a while to see what happens before prescribing any drugs. The diagnoses of rrms and ppms are complex - what has always bothered me is that no one really knows for certain how things will pan out in the future - parts of us may be slowly getting worse but other bits of us may have problems but then recover i.e. we can have rrms and ppms at the same time. It is easy for me to say this but I think the best way forward is to take each day at a time - hang on to the idea that things will settle down and don’t be looking too far ahead.

As always excellent advise by all. I’m one year on from diagnosis, which took just over a year, and believe me Sue is right. All I can offer to you is, and I mean this sincerely, but realise from personal experience how hard it may be for you, is as Sue says, tell your partner and then focus on having the best wedding you could possibly have in the world. Unfortunately, the MS will be there and won’t go away ( in my very limited experience it wax’s and wanes, is sometimes passive some times not, if you get what I mean) and is now part of your life, but your life doesn’t stop. I had Optic neuritis as my first symptom and quite frankly I was so worried, who wouldn’t, but my sight did come back. Best of luck and have a good wedding.

Hello all. Thanks for your replies and your support. I’ll try to respond to some of the things that leapt out at me, but sufficed to say the kind words and help you’ve all offered are appreciated more than I can adequately express. Sue, that’s useful regarding the symptoms dissipating slowly. Obviously at the moment I’m still getting to terms with things and getting used to the idea of not constantly looking for any slight change in the situation and reading into it! Hopefully the distraction of the wedding and my trip to Tenerife straight after will act as a suitable distraction. Anthony, I did indeed look at the McDonald criteria and discuss it with the specialist. He essentially said that yes, technically it’s true that these various things need to be given time but that in his experience any follow-up tests are only going to prove his diagnosis. On the one hand I am still clinging to the notion that they might have jumped the gun, yet on the other I feel as though if I accept it and move forward as though he’s right then I don’t lose anything. If, however, I act as if he’s wrong then I’ll be a couple of months behind the curve by the time the diagnosis is proven, if that makes sense. Krakowian and Chatterbox, I know that you’re both right. I’m realising the more research I do that it’s all about time now and letting things pan out as they do. I suppose I’m just upset about my wedding day not being the occasion that I thought it was going to be. At the moment, for example, I certainly don’t think I’ll be able to have a celebratory drink and I’m concerned about things like my first dance. I guess I just wanted the diagnosis to mean that everything would be better by the day, but that’s not the way it works. I’m going to Cuba on my actual honeymoon in November and right now that feels like a complete waste. I was so looking forward to trying the different rums! Thanks again everyone. A

Hi Zadian, my MS gives me bouts of weird eye thingies such as blurry vision, wobbly eye feeling, really tired eyes, dry eyes, feeling like there is a pen behind my right eye. It is sporadic and from my reckoning comes when I am not resting enough, getting stressed or when I have unsettled nights and eratic sleep. I get the feeling of ‘getting off the boat’ when I know at that point I should be sitting down, very quickly. Five minutes of sitting and quiet breathing gets rid of it. I also find sometimes it helps to breathe and focus my eyes just on one thing i.e. if I’m outside, I look at the shed and only the shed. This also puts it right.

I have my eyes tested regularly at length, there is nothing wrong apart from being dry, a long term weak eye and aged! So these are part of my MS symptoms. Sometimes they go away for a long time then just appear again.

This probably isn’t of any help but I thought it might help knowing someone else has something similar. Like most of my MS symptoms, I tell it to bog off or worse most days.

Full diagnosis takes ages sometimes. They also are not keen to tell you too many things at first as they know they want to tell you correctly, so I could expect them to monitor you now over a period of time, maybe do some tests maybe not! Each consultant is different. You might find that if the consultants have been around for a long time and understand M.S. well and if they know you are getting married, they will hopefully wait and give you a follow up appointment after the wedding. My eventual diagnosis came several years after someone said it was M.S. from an arm x ray. After an initial burst of appointments, nothing happened for a while, then when they understood my M.S. a little better more people got involved and more appointments appeared. I asked why the time when nothing happened and they said it was to see if there were any changes in me but also to consult with others during that time. Again, hope this helps. Pam

zadian

you won’t have started on any medication by the time of your wedding so there’s no reason to deprive yourself of a glass of champagne!

once you start on a DMD you will work out for yourself whether a drink makes you feel bad or not.

i didn’t drink at all for the first few months of copaxone but then realised that it wasn’t the real me and started drinking again, sometimes quite heavily.

after switching to tecfidera i became cautious again until the side effects eased off.

now i wash the tec down with my gin and tonic!

you’ll figure it out for yourself.

just make sure you enjoy your wedding!

and bring a couple of bottles of rum home!!

Oh , Carol you always make me laugh! And we all need a good laugh.

Zadian you have had some fantastic advice already as always on here. You have been diagnosed over a very short period and are probably in shock still. You need to take the time to let this sink in. I was diagnosed in October last year and I am still taking it in! Don’t fight against it as it won’t help. If I were you I would do nothing until after the wedding and the honeymoon (in fact if you can put it from your mind completely but I don’t imagine you can) The best thing you can do for YOU is to have the best day of your life at your wedding and the trip of a lifetime on your honeymoon. Do not allow MS to spoil this for you. Let your upcoming wedding be your total focus over the next few weeks and then you have the honeymoon and then your first Christmas as a newly married couple…(then whatever you want next; domestic bliss;;puppies;babies??? As a writer perhaps you could write about your experiences with MS? )

For me personally MS isn’t going to stop me from doing what I want to do for as long as I have anything to do with it; in fact it spurs me onwards. I don’t know what tomorrow holds so why wait to do the things that I want to do!

Finally massive congratulations and have a wonderful day! Oh and like Carole said definitely have a drink or ten if you want to …what’s the worse that can happen?

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Congrats on your wedding zadian!

Just thought that I’d say that I was diagnosed off of 1 MRI test. I’ve never had any of the extra tests but I think if you feel uneasy and want the tests then you should ask for them.

Re: weird visions problems. My initial symptoms (with hindsight, I wasn’t diagnosed until 2 years later - mostly because I didn’t think anything was wrong and was generally apathetic about going to a dr) were vision related. My right eye only was like there was something in it obscuring the centre of my vision. That went over a few weeks but over the past year I’ve discovered that if I get cold (like going in the sea in the uk) then my vision goes…weird. I can’t explain it, like you I don’t get double vision or blurryness but I sure can’t see properly when it happens.

I believe that steroids will make recovery happen sooner but not make recovery faster, if that makes sense. i.e. the time until recovery starts is shorter but recovery itself will still take the same amount of time so a bit of patience may be required :).

Hi Zadien, I’m in the same boat. I am not just about to get married but I do have a tiny baby. I am terrified and I am constantly trying to work out if the problems with my vision are just sleep deprivation or MS related. I keep tripping over and Im in constant pain. I haven’t had my pain killers yet, I turned them down at first but I have a script to pick up tomorrow. I don’t really know what to think or do. I am having a dye MRI in about a month but I had already been diagnosed with RIS, about a year ago. This showed several patches of inflammation in my brain and inflammation in my spinal fluid but no ‘episodes’. Although it is scary I am trying not to read too much about it at the moment. I don’t want to know about the horrific stuff just yet. I do know from a friend with MS that the new meds are so much more advanced than they used to be and will work especially well if your diagnosis is caught early. Enjoy your wedding, it will be amazing. If you are back by the 29th September there is a MS information conference in Torquay. I know I haven’t been much help but I wanted you to know you aren’t alone. Take care xx

Dear Zadian, good luck with your imminent wedding day and enjoy every minute of it. Re. The MS diagnosis, everyone here is right when they ask you not to panic. I was so frightened when I was first diagnosed, but you will work through it. I was petrified and I am not petrified now. In no particular order, things that helped me…this forum, friends, chatting, telling people, not googling scary stuff, this website. Also, I got a free book from the Overcoming MS website and although it makes no promises, it did offer me some control. I am now, vegan, I exercise and ironically, even with ms i am healthier! Enjoy every day and try to find at least one thing each day which makes you laugh. warmest thoughts ali

Dear all Thanks so much for all of your kind and supportive comments. I haven’t been on here much as the wedding is now fast approaching. I will do my best to enjoy the day. I think the thing that’s holding me back is the fact that I am still in the middle of my first ‘episode’ and having continuous problems with my vision and balance. I don’t know when it will go away or even if it will ever leave me. This might be my new normal. We’re at about five and a half weeks now, so who knows. The problem is that I feel disassociated from reality and can’t really live in the ‘now’. I want to do that for the wedding but obviously it’s really hard to do so. Again, thanks so much for all of your messages. I’m glad I found this lovely community. Adam

Good luck mate. I too started off with visual symptoms but in my case they subsided after a year or two and never returned. Of all the advice I could give you, I’d say the one I’m most certain of is the importance of keeping fit and active for as long as possible. If you play sport keep it up and if you don’t, take something up for fitness. Swimming, gym, anything that keeps your heart beating and legs working. Of all the things I failed to do in the early days, this is the one I wish I could go back and change. Oh, and avoid stress as much as possible, eat well, rest well and drink plenty of water. Good luck