36 year old female & my life changes so far

New diagnosis and before diagnosis
1

I admitted myself into A&E Monday 14th March as I was presented with acute confusion, dizziness & unsteadiness & mild right leg ataxia. I was put in the stroke ward and after tests, thankfully a stroke wasn’t my issue. I had a head CT scan which was inconclusive, so a brain & spine MRI were done. My MRI brain & spine scans showed multiple areas of demyelination of varying ages consistent with MS. A neurology review was sought and I underwent a lumbar puncture. This showed a likely inflammatory process and I was given a 3-day IV high dose of steroids. I was discharged from hospital to recover at home on Friday 18th March and await a further neurologist appointment.

I was slowly recovering at home, when my mum had to call 999 for an ambulance on Sunday 20th March. After waking, I went downstairs on all fours, I felt brighter than before, but when I reached the bottom stair I couldn’t move, my speech was very sluggish, delayed & slurred. My limbs felt very heavy and every part of me felt as if it was held down with weights - no strength whatsoever, I felt so tired. The ambulance admitted me and when Doctors asked me to move certain parts of the body, even though I could hear them asking, I couldn’t do it. I had further blood tests and various visits from Doctors who told me that they had carried out more tests from fluid they had from my LP, they felt I definitely had Multiple Sclerosis, so they sent a MS nurse to come and talk to me to gen me up.

I was released from hospital again on Friday 22nd March. I have never been so frightened in my whole life, as these last few weeks have caused me to be. I’m now on the mend and thinking much clearer. It’s almost 4 weeks since I first went to hospital. I’m having to use a walking stick and I still have so many physical symptoms, but am praying they will all disappear eventually.

Before my recent events, I knew nothing about MS let alone visited my GP thinking I might have it! During my recovery at home, I’ve been researching into MS, and I cannot believe how much of what I’ve been experiencing in my life over the last few years, has now all clicked into place. I have always been so strong minded, all I’ve done is plod along, dealing with things and I’ve not seen Doctors because I had been blaming so much on hormones and my childhood dyslexia.

I was diagnosed as dyslexic as a child, but I managed to beat it and make a success of my life and career. Both my family and I, can take our memory back to three years ago, when things started going wrong for me. My working life started to become a huge struggle due to slowed thinking, memory issues, word finding issues, attention span & concentration issues. but like I said, I has been blaming these on dyslexia and hormones. I have always been unsteady on my feet, but over time it’s got worse and I’ve blamed this on being clumsy and pigeon toed.

Family have noticed character changes in me for the last few years and I really haven’t become a nice person. I have been very hurtful, have made inappropriate comments, and have broken into rages. The emotional and behavioural characteristic changes have been so unlike me.

Because I feel I can now understand all the changes I have been going through over the last 3 plus years, and so does everyone else, a huge relief can now be felt, because I can now get a grip on life and my future. I can’t wait for my neurologist appointment in 2 weeks. As my MRI brain & spine scans showed evidence of multiple areas of demyelination of varying ages consistent with MS, I’m just prying that I won’t be waiting too long for a diagnosis, because I want to accept this and get on with my life.

If you have been kind enough to read this, your comments would be gratefully received.

2

Hello,

im afraid I don’t have too much useful to add (new to this game myself - see the “in shock” thread), but wanted to reach out as we are the same age and in the same boat. Your ordeal to getting to this initial stage of diagnosis sounds horrendously scary (I just had numb toes - but MRI scan showed a lot of lesions throughout MRI) - and was a good reminder to me why I want to fight this disease as soon as possible with everything modern medicine can throw at it to halt the progression and keep mind and body intact for as long as possible. I’m using the time between neuro appointments to learn as much as I can about the DMDS on offer - to be as strong an advocate for myself as possible for a diagnosis of active RRMS and the right to have Lemtrada as a first line DMD. The side effects are scary - but to my mind this disease is more so (although the approach to DMDs is something everyone needs to come to in their own way). The time between neuro appointments in this initial “limbo” stage is a killer. I’ve just received the time for my first NHS appointment with the neuro following GP referral - 12 July feels a life time away. One of the benefits of CIS diagnosis at this stage is that my private medical cover is still active - so I have the luxury of an inter neuro appointment (with the same consultant) and MRI before then - but even with that I feel like a sitting duck. To help myself out I’ve started supplements (D3, B12 and omega 3) - which my neuro and GP approve of and am reviewing my exercise and diet regime (and playing brain training games on my phone to keep cognitive cogs whirling). I’m also trying not to drive my very patient boyfriend nuts by obsessing over all this - but finding it hard not to! This forum and Shift MS are a great help in not feeling quite so lonely and confused. Good luck for your neuro appointment in a couple of weeks. Hope you get some answers and further recovery from your current symptoms. Xxx

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3

Hi,

I was diagnosed in 2009 after a year or two of drop foot and left leg weakness. Like you, the penny dropped that I’d had inexplicable symptoms that didn’t register at the time. I had bladder problems, (wanting to go but unable, then wanting to go immediately after urinating). A sensation of the ground beneath me vibrating, as if there were a pneumatic drill nearby.

It was only after a bout of optic neuritis that a neurologist got involved. Even then I met resistance by one professional who told me that I was too old (at 55) and that my problem was “functional”, by which I understood to mean something like “psychosomatic”. I suppose that I eventually met the McDonald criteria with a lumbar puncture.

I’ve adapted my lifestyle to live with MS and, when a new symptom occurs, I accept it and adapt again. On the principle of “use it or lose it” I try to exercise every day, but I don’t have unrealistic expectations of what I can achieve. I think my best weapon against MS is a positive attitude.

The hardest thing I’ve had to contend with are side effects. One drug gave me a very short fuse. I had got as far as an appointment the local mental health team before I realised that it was the drug and not me that was to blame. Medications are probably the most unpredictable aspect of living with MS as no one knows which one works for any given individual or what dose.

The most important thing is to have an understanding family and friends. The second most important thing is to have a specialist MS Nurse. and thirdly, a friendly GP who (realises he/she is totally out of their depth and) does what the MS Nurse advises.

Finally, this forum hosts an enormous wealth of first hand knowledge and experience. Nobody understands MS and its consequences better than this “Gang”.

It’s a shame, but if you qualify for membership, Welcome.

Anthony

4

Hi,just saying hello and sending you my best wishes.

You`ve had a tough life so far and I hope things settle down and you get some good support and perhaps medication to ease your symptoms.

Look after yourself.

luv Pollx

5

Hi everyone, weirdly it’s comforting to hear your stories(sorry the correct word is hiding in the depths of my Brain). I’ve just been given the news I have MS from my Doctor after the MRI I had. I’m off to see the Neurologist on 28th April to find out the whole story. I’d gone to the Docs as since Dec I had the burning sensation in my legs, groin, bottom area , my bladder issues had got worse and I had numbness down right side of body which has changed to constant tingling. Since being diagnosed I had researched other symptoms and now realise I have many and for a while, mainly the memory, dodgy sentences , trismus, mind blanks, struggling to remember the words the odd numbness in my legs , bowel etc. I think my main concern now is working , I have a job that takes all my concentration and multi tasking and I’m already struggling. Anyway I hope you guys get on okay at your appointments.

Take care

6

Crumbs, what a time you have had. I was dx fast too (not nearly as fast as you, mind, and not nearly as dramatically either!) and at about the same age. I didn’t have the ‘unexplained things in the past falling into place’ bit, because my first MS symptoms came out of the blue and were the ones that set me on the short road to dx. Yours has been a particularly brutal introduction to this new world and I really feel for you. But at least you’ve got the initial waiting and wondering out of the road in double-quick time and can start looking to the future, just as you say. (I’m assuming here that you do have a dx of MS - or good reason to believe that actual dx is a formality - apologies if I’ve misunderstood).

Good luck with it all.

Alison

7

Hi

I’m also very new to this, and the last 8 weeks of my life have been pretty traumatic/terrifying too, and still awaiting a diagnosis (my story on the ‘In Shock’ thread). It is a shock when you suddenly can’t do things you’ve done all your life.

Just want to say you’re not alone, keep coming and chatting with us other ‘in limbo’s’ who are awaiting diagnosis, and let us know how your next appointment goes.

eve x

8

Thank you to everyone who replied to my post. I’m very sorry that I haven’t responded sooner, but my life since March has completely changed. I received a diagnosis straight away in April, and since my relapse, I’ve struggled to come to terms with everything I’ve been/am going through. On top of that, i’m also in the process of deciding which drug I’m going to start taking. We all have so much in common and I truly wish, that you are all coping with life. Big hugs to you all. Thank you again for taking the time to reply to my post.

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9

Hello,

Sorry to hear that you received a formal diagnosis following your initial post. My own diagnosis was confirmed as active RRMS in June when a second scan showed one new lesion (although thankfully no new symptoms). With regard to treatment, I opted for Lemtrada. Whilst I’m scared of the side effects I’m more scared of MS progression so wanted to hit it hard and fast. I’m on my first day back from hospital after having received the treatment, and the gauntlet of infusion reaction/ infection/ long term side effects is a marathon and not a sprint so it’s early days for me, but at the moment I’m feeling pretty well (if shattered). If this is one of the options you are looking at very happy to share my experience.

Good luck

k xx

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Hello Katy

We both received the same diagnosis, pretty much at the same time!! Further scans have also shown my MS is active. Like yourself, I want to hit this hard and fast, and am waiting for my Addenbrookes appointment in the post, so I can also sign up to Lemtrada. I appreciate that you’ve just come home from your first infusion, but as & when you’re ready, I would love to hear more on your experience.

Take it easy, and we will speak again.

Sophie X

11

Hi Sophie,

Day 2 post lemtrada for me and I’m feeling pretty good. Slight headache if I don’t keep on top of my fluid intake and a little bit tired but otherwise pretty well all things considered. I was feeling a little cooped up after the hospital stay so went for a (slow and wobbly) walk in a local country park yesterday for some air which I think did me the world of good.

I had my treatment at Kings College as an in-patient (I think Addenbrookes treat people on an out- patient basis?). It wasn’t too bad. Each day started with blood being taken for daily blood tests and anti- viral and anti- nausea tablets (you have to keep taking the anti - viral tablets for a month post infusion). Further meds (anti- histamine I think) were injected via the canula (mine was in my wrist. It didn’t hurt - and was changed after Day 3). For the first 3 days I received 20 mins of IV steroids (some hospitals use steroids for all 5 days). These ached a little on the way in and left a disgusting taste in the mouth - so take mints! Finally, I was given the Lemtrada over 4 hours. During the infusion, and for 2 hours post, heart rate/ temperature/ blood pressure was monitored.

Some of the meds made me a little sleepy, and I had a bit of a headache on Day 1, but nothing too bad - and this passed with drinking lots of water. My heart rate was a bit up and down - and my blood pressure a bit low- but all in normal range. On Day 2 the rash started - but was gone by the time I came home (although it was pretty spectacular on Day 4. Calamine lotion and piroton help).

I slept pretty well each night despite the steroids - and watched a lot of breaking bad to deal with the boredom!

I’d made contact with other people going through the treatment at the same time on Shift:MS and the Lemtrada, Alemtuzumab (Campath) treatment in UK and Ireland Facebook group and swapping notes/ encouragement/ grim pictures of rashes along the way also oddly helped.

For me, next steps are to try and avoid infection (should have brought shares in disinfectant spray and hand- gel companies!), sticking to the diet (going to miss dirty cheese and seafood!) and starting the monthly monitoring.

Hope some of that is helpful?

Good luck!

Xxxx

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Hello Katy

Im so pleased to hear that you’re doing well. I’m finding your notes very helpful, and I’m making myself a list of things I will need ready for my admission. After discussions with my team, I was under the impression that I would also be an in-patient.

I’m pleased that you were managing to sleep after the steroids. Perhaps it was a combination of the medsmthat were knocking you out!

After reading a post on the MS Society, I was under the impression that you had to stay indoors after being released. I assumed that this was to ensure that we didn’t mix with people to prevent catching illness. Thank you so much for mentioning those Facebook groups, I’ve just found them, and I’m ready to squeeze as much info in as I can, and make sure that all questions I might have can be answered.

I hope that you are getting plenty of support Katy.

Take care & sleep well xxxx

13

I am glad to hear that you are going for Lemtrada. If it had been available when I was dx in 1999 with alarmingly active MS, that’s what I would have gone for too. It was great news for RRMSers of my generation that DMDs were becoming available at all; it is great news for yours that the world has moved on and that Lemtrada is there to stop very active disease in its tracks good and early. Hurrah for progress!

Good luck with it all.

Alison

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