In shock

New diagnosis and before diagnosis
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Hi

I am currently being assessed for MS. It’s all happened so quickly and I’m feeling confused and quite distressed.

I’m now 37. About 4 years ago, I had a strange thing where my legs started tingling, and it went on for about 6-8 weeks. I did go to the doctor, but seemed to think it was back related, referred me to a physio who didn’t really think a problem, gave me some stretches to do and that was it. I did the stretches a few times, but the tingling eventually subsided by itself, and thought no more about it.

Then a little over 4 weeks ago, I got tingling in one foot. I had twisted that ankle a couple of weeks previously, so I went to the doctor just to check all was well. She thought it was just the nerves being sensitive to the blood/bruising in the foot. The next day, the other foot started and then over a few days it spread up to my waist. 10 days later I went back the doctor. Got referred straight away to hospital. They did some bloods and arranged an MRI. MRI done less than a week later, but this point my walking/balance was going, plus other things, sensitivity to touch, no heat sensation in legs. 2 days after MRI back in for results, they did a lumbar puncture, arranged a brain MRI. 5 days later, MRI done, now struggling to walk and toilet function poor. MRI’s showed a lesion on spine and two on brain. Saw neuro yesterday. There was a positive for an infection in ONE test. But there is no evidence from anywhere else and I’ve not been ill or had symptoms. So I need more tests to rule out infection as the cause, so had more bloods, am being booked in for another LP, and I’ve got a VEP next week.

Then I see her again in about 4 weeks once all results fully back.

She basically told me the cause of my symptoms is either an infection which will be treated with antibiotics, or MS. I said could it be something else – she said no. And she hadn’t seemed convinced it was going to be an infection.

So in 4 weeks I’ve gone from a normal active person to a possible MS diagnosis. Today I’m really struggling as I’m having trouble emptying my bladder – I really need to go but it just won’t come out. It’s getting quite distressing. I am at work, and keep staggering to the toilet and bladder hurting, but can’t go. So come back to desk, half hour later try again. Have actually just managed to go a bit.

Sorry for long post. I don’t want to tell people as I don’t know yet and still getting head round the possibility, but also I just need to get it out. Thought you’d probably understand here.

Thanks x

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Hello, I’m afraid I don’t have much useful to say, as I’m very new to this myself, but wanted to reach out so you know you are not alone. I’m 37. 4 weeks ago today I thought my new heels were too tight and had caused my toes to feel numb. Three days after that, and with pins and needles in my groin, I had an MRI to confirm I didn’t have something called cauda equine. I didn’t - but I did have lesions on my spine. A couple of neuro appointments later and a further MRI and I’ve been diagnosed CIS - but with lesions on my brain, brain stem and down my spine I’ve been told I meet the diagnostic criteria of MS (the final diagnosis of which feels inevitable now). I’m still reeling. However, this site and Shift MS (and the brilliant, brave regular posters) have shown me that this is not the disease it once was. There are people our age, working full, time raising families and training for marathons. And there are drugs - scary, complex, intimidating drugs - but drugs capable of helping get a handle on this and which may have a positive impact on some of the scarier stats on disease progression over time. At least this is the line I’m taking with myself. So far the only people I’ve told are my boyfriend, best friend and personal trainer (we’ve agreed I should do more boxing - for physical and cognitive strength and anger management!). Everyone else can wait until I understand this thing myself - although that does make this a lonely experience. Until then the boards are a great source of support and info. Xxx

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I’ve also introduced a few small changes. No idea if they make any difference but my neuro approved of them and they give me a sense of doing “something” pending the next neuro appointment and discussion on drugs. I’ve started taking daily B12 and D3 and omega 3 tablets. My diet was pretty good but I’m keeping an eye on it and introducing more oily fish (but carbs and dairy remain in the table for me in measure). I exercise regularly anyway, but am introducing core and stretching exercises as part of my bedtime routine. I’ve also downloaded a brain training app for my daily commute. Probably doesn’t make any difference but it’s a break from the horrors of the news at the moment. Xx

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Hi Katy

Sounds like it’s happened very quickly for you too, but sounds like you’re already doing positive things :slight_smile: How many days since you found out it could be MS?

I’ve just been lent some crutches today - my walking has been awful the last couple of days, I fell on the floor at work twice yesterday. As much as I haven’t told anyone at work yet that it could be MS, it’s not possible to hide the fact that there is something wrong - they can blatently see that my balance and legs aren’t working properly :frowning: . They know I’ve been going to the hospital for tests and I’ve just said that tests are ongoing.

My partner’s been amazing and I’m feeling incredibly guilty - I have been studying accountancy for the last 5 years on top of my quite high pressure full time job, and he’s been so good supporting me through that, cooking and looking after the animals and allotments whilst I’m studying late every night and weekend. This came on just 3 weeks before my final exam. It was such a distraction I will probably have to retake - I had soooo been looking forward to getting out on the allotment, riding my horse, walking my dogs etc this summer - and now I can barely get around the house and he’s having to support me even more :frowning: Obviously he knows the situation and keeps telling me it will be fine and we’ll cope…

eve

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Hi innyminy,

Yes, I think I can speak for everyone that we do understand.

I’ve never come across such a positive, caring, and knowledgeable crowd all hell-bent on offering support. The raft of experience we have beats anything else hands down.

Stick with us. This Forum will never let you down.

Anthony

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Chuffin eck! That was quick, no wonder you`re in shock.

It usually takes a lot longer to get all the tests, appointments and reach a diagnosis.

If it does tur out to be MS, please dont think your world has come to an end.

It wont, honestly!

But what you will have to do is pace yourself. Take time out to rest when you need to. Dont read anything and everything you can find re MS.

This forum, the MSS, do a great set of literature you can get for free. Just click on support.

If it isnt MS, then great…get yourself well and forget MS.

luv Pollxx

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Hi Eve,

i had my first appointment with an MS specialist neuro last Friday evening. He confirmed the CIS diagnosis and explained what the MRI lesions (dull and enhancing on the scan) meant re. ultimate MS diagnosis. I had already had two appointments with a general neuro over the previous weeks so was forewarned. The MS neuro has asked for my GP to refer me to his NHS practice (the initial referral from the general neuro had been on private healthcare) so we can manage my treatment moving forwards from there (as the luxury of private healthcare will end as soon as the formal MS diagnosis kicks in). I saw my GP on Thursday and she was very understanding. Hopefully the wait time for the referral won’t be too bad. In the meantime I have a follow up with the ms neuro in 4 weeks at which we are supposed to discuss treatments and whether we want a family (a subject on non committal discussion for three years so no idea how we are supposed to land this now - with this in the mix!). I’ve also been asked to book in for a follow up MRI in three months and told to expect the local MS nurse to get in contact.

So for now I’m in a game of watch and wait. I’m impatient at the best of times, and my job (corporate law) means I like to own a process and timetable so this is hard. I am also desperate not to see every new ache and pain as a sign of relapse - but also not to ignore any signs that may inform the neuro how my illness is progressing as this could inform drug choice. I’m keeping a diary for the first time since I was 12. Not a thrilling read - but a way of working out whether tired arms are MS or a result of lifting in the gym!

i know what you mean re. feeling guilty. I truly have no idea at all how I would have coped over the last few weeks without my boyfriend. He has been a total star. I’m very conscious that he is there for me, letting me download my MS research findings and stories from the web each night as I try and get my head into this and kissing away my tears - but I’m worried that there is no one to support him. This affects our shared dreams for the future. We have a weekend away for Easter - will be good for us both to relax, walk in the countryside and try and take a break from this.

Well done for just getting through your exams - great tenacity - and hopefully you’ll land the results too. The dogs and the horses sound like bliss. My retirement dream is walking the downs with Richard and some dogs in tow (possibly a vizsla) - but whilst we are commuting to london each day we’ve had to make do with a pair of mad moggies!

Take care - and stay in contact. Hopefully the MS diagnosis never comes, but if it does may be helpful to swap notes and support.

Apologies if this is. Badly typed ramble - written in the car!

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Hi Katy

Seems we’re on a similar timescale, although I think you’re a bit ahead of me, and you’ve done more research and got more info than me! My god, about the kids discussion. We’ve had noncommittal conversations about that for years, my job has always at the forefront, but it was something that I was vaguely considering that had to be thought about imminently due to approaching 40. More to muddle the brain.

And I know what you mean about the impatient thing - I’m also not known for being patient! And interesting about keeping a diary. I actually didn’t do a diary, but started a timeline on a bit of A4 of how my symptoms developed over the first few weeks, for my own interest really (I don’t have the best memory), before I knew what the score was, but it proved quite useful when I saw the neuro, I was able to tell her exactly how it had developed.

Vizsla, nice! I like larger dogs, my two are rotties (very bemused rotties now I am staggering round the house leaning on a zimmer)

As you say hopefully for both of us we get a better diagnosis. We both have amazing men to support us either way, and as I keep seeing everywhere, on here and from others, if we are diagnosed MS we can still have normal lives.

Really hope you enjoy your Easter weekend away :slight_smile: Definitely stay in contact, it seems wrong to say that it’s nice to know someone else going through the same thing at the same time, as wouldn’t wish it on anyone, but I’m sure you know what I mean.

eve

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Thanks Anthony and Poll, it’s really nice to know how much support there is!

x

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He’s right: you will. A supportive and loving partner is a blessing.

It is a horrid time, what you are going through, and I’m sorry for it. Hang on in there.

Alison

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Hi Eve,

I definitely know what you mean! Hope you had a good Easter break, the symptoms are abating and that the rotties looked after you? Just wanted to wish you luck with your VEP this week - and to say to drop me a line at anytime.

K

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Hi, I can remember when i had MRI scan i was 40 had my 4th child approx year before …and didnt realise the numb feeling in my right leg could be MS …they said you have multiple lesions on brain and a couple on spine…i was in shock…although i had friends in scotland who had MS …and knew a bit about it …but not everything…neuro said probable MS …didnt do lumbar puncture …didnt think i needed it…i left the hospital in a daze…told hubby when i got home …we stayed in shock for a while but right away started researching MS online etc…and bought a book…after tiem passed got an MS nurse and she said its secondary progressive …as the numbness down my right side had stayed …im 57 now …still the same …but i know how you feel …the limbo stage is not good …takes time …but youlll get there …when i found this site was the best help …as GPs dont know alot about MS…i came on here every day and night …it will help you…

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Eve,

It sounds like your partner is a good 'un. I would suggest that you build a team of support including family, friends and professionals so that between you, you can all work together to deal issues if and when they turn up.

All the best

Mick

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Hi Eve,

just wanted to go check in on you. Hoping your walking has improved? Xxx

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Hi Katy!

Been doing some avoidance I think, trying not to think about it all so didn’t come back on here for a bit - I can’t believe how many new posts there are in this forum of new/pending diagnosis since I last looked - just don’t realise how much this is happening until you become one of the potential ‘victims’.

I’m doing ok, from my really low point of my legs being so terrible, and my balance being so off, I’ve actually improved loads over the last week, and I am using crutches rather than the zimmer to get around, and can actually stagger around without them - but only do this in safe places with walls, tables, surfaces I can grab as I am liable to try to run before I can walk and trip myself or over balance! The neuro said she would get my GP to refer me for some urgent physio as my legs were bad, but didn’t send the letter to the GP for a week, who I then saw a week later and hadn’t realised or done it. So did a referal, and yesterday I got a call to say the referal had been rejected as she refered me to musculoskeltal physio, and should have done it to neuro physiotherapy. So at this rate by the time they are ready to help me, I will (hopefully) not need helping!

The VEP test was interesting, have you had one? I am really short sighted and he started off wanting to do it without my contacts in - and he didn’t believe how short sighted I was until I read the whole eye test board from top to bottom perfectly with them in, then couldn’t even manage the A at the top without them. I could only just make out the mark to stare at on the screen without contacts, then he got his supervisor to review, then they decided I should do it with them in!

My assessments towards diagnosis of whatever is wrong have gone from Hare’s pace to Tortoise. The Neuro who wanted to see me in 4 weeks with the last test results actually turned out to be going on holiday for 5 weeks, and the lumbar puncture appointment is through for 25th April, which is itself about 4 weeks after the appointment, so no way the results would have been back anyway! So still practising the limbo :frowning:

How are you getting on? Any further news on your diagnosis? Did you have a good Easter break away?

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Hi Eve,

Great news that you’ve seen some improvement in your walking- but I’m sorry your still not fully mobile. From what I’ve read, neuro physios can work wonders so fingers crossed.

How incredibly frustrating re. the messing around with all your appointments. Being in limbo/ dealing with this (sort of) diagnosis is frustrating enough without that!

Not had any mention of needing VEP/lumber puncture. Like you I’m totally short sighted and see the board as an indistinct light rather than something to read if I don’t have my lenses in!

I’m also no further on in the process - but, thanks I think to the steroids, all my symptoms went away as quickly as they came (and save for one uncharacteristically angry call to the man at Sky no side effects from the steroids). So life has mercifully been able to go on without too much MS interruption (save my OCD need to Google daily in continued prep and war gaming for the next neuro appointment and rattling when I walk from the vitamins). We had a lovely Easter break walking the Thames Path (although rain meant we spent one day visiting my boyfriends old college in Oxford rather than trudging along the slippery tow path) and we’ve just got back from walking part of the coastal path in Northern Ireland (Giants Causeway etc) with friends (including a weimeraner and German short haired pointer - beautiful!).

I have my next (private) appointment with my neuro on Thursday - and my GP referral back to him on the NHS has been accepted with a follow up MRI in early May and a further consultation in early July. I’m pretty sure that, even though I’ve been lucky to date with my mild symptoms, I want to hit this as hard and fast as I can so I’m hoping for a fast diagnosis of active RRMS to be able to push for Lemtrada. Given my last MRI, diagnosis feels inevitable.

Thought I was generally doing ok with this emotionally until i went to the Drs last week for a routine smear and discovered reception had made the appointment with a new junior make Dr who doesn’t do smears and promptly burst into tears. Poor junior Dr - not the reaction he was expecting!

Im still dodging telling too many people (boyfriend, personal trainer, brother and sister-in- law and one friend). Saving telling work until I need to take time out (hopefully this will be for treatment).

Hope your rotties are still looking after you?

K xxx

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hi eve

have you got a UTI (urinary tract infection)?

these play havoc with ms and are to avoided at all costs.

get yourself referred to the nearest bladder and bowel clinic - the nurses are lovely.

you can self refer if you prefer.

for now though try leaning forward and leaning back, whilst on the loo.

this can help when you can’t pee. (you will look quite mad so shut the toilet door)

carole x

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Hi Carole

Luckily I managed to avoid a UTI!

Yes I did some funny stuff when trying to pee, had a go and the back and forth, then I found in the end that if I stood up (when my legs let me) and jigged around abit/alot that helped! Then it would happen in dribs and drabs, do a small bit, stand up and jig, sit down, do a bit more! Seems funny to talk about now, but it was very distressing at the time.

Thankfully (or not) that has passed, and I’ve now moved on to the other end of the spectrum of when my body suddenly tells me I have to go - I have to go!

I like the looking mad thing - my partners getting quite used to it now! (poor bloke!)

:slight_smile:

eve

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Hi Katy

Very jealous of your lovely walking hol’s with the dogs! I’ve never been to Giants Causeway but it’s somewhere I’d like to go to.

I’ve been visiting my horse and chickens by way of a ride on tractor/mower to save my legs - they (my legs) are much better but it’s still a touch far over uneven ground to be walking it yet - unless I’ve got an hour to spare as I’m so slow!

How did your appointment go on Thursday?

I had my second lumbar puncture yesterday - it did not go well. With the first one 6 weeks ago, I didn’t feel a thing and they got the fluid out first go. None of that this time - got sent to the Royal Free in London, nearly got told it was cancelled, then it wasn’t, then I went in and she did the anaesthetic - sure that stung more than last time. Then the needle went in ok, then I could really feel it when it went to go in the muscle, so she took it out, did more anaesthetic, went again. Was more tolerable and put up with it - then no fluid came out, so tried again, hurt, so tried again with a thinner needle. Not so bad now but still no fluid. Tried again, then tried with me sitting up, then lying down again. Maybe 11 attempts, no fluid. Today I have a very sore back, and they’ll have to try again another day, with dye and x-ray guidance :frowning: :frowning: I just hope it gets rearranged asap, as appointment date came through for the neuro consultant - 25th May - and she wanted all the results back before the appointment.

The emotional thing is tough - I think as much as we think we’re getting on with it and doing ok, I think it’s always there in the background and doesn’t take much to unexpectedly show itself. I am still smiling and joking about all this at work (they don’t know potential diagnosis, just that it might be an infection/virus) and keeping lighthearted, but occasionally I have to hide myself away to get over a mini meltdown.

eve x

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Well I got my diagnosis a week ago… I have now joined the MS world.

It’s not a shock anymore. I was a bit sad when it was finally confirmed, but I think I’ve known from when it was first mentioned that this is how it would end. Or begin. It’s a new beginning in a new world.

Got to look on the bright side, my symptoms have improved tenfold since I wrote that first post, and although not back to 100% I’m going the right way.

On the downside, I’ve always wanted to be nice about the NHS, as never really had anything wrong with me until now so never experienced it other than the occasional doctors appointment which were never a problem. However, this experience has been atrocious! It’s not so much the staff, but the system. It’s just so wrong - unwieldy, unable to utilise resources outside the box, unable to plan effectively. It is shocking. Makes me sad.

Anyway, there we are.

eve x