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New Diagnosis Of RRMS - My Story

Hi all, I’m quite new to this forum having only joined a couple of weeks ago, but wanted to share my story and offload and maybe here some positive things about MS?

My mum was diagnosed with Primary Progressive MS many years ago and I single handedly looked after her and my younger from around the age of 10 right up to my early twenties when I eventually flew the nest and my brother took over. She had a rapid decline from her diagnosis just before she was 40. For the last 10-15 years she was unable to walk, completely dependent on carers and us. Unable to feed herself, cognitive decline was advanced to the point where most of the time she had no idea who I was. She spent her days being transferred from her special arm chair to her bed and lived life very much as a zombie as she’d all but given up. Unfortunately she passed last year after developing stage 4 pressure sores (massive neglect on behalf of carers and social services that we had a massive fight with), but she developed osteomyelitis and pneumonia and we had to decide to stop the anti-biotics and let her go as we were prolonging her suffering.

Anyway, onto my story - 3 years ago I had complete numbness down the right hand side of my body. It was as if someone had cut me in half and everything on the right was senseless. I couldn’t feel anything at all from my neck down, but this hadn’t affected my mobility. I’d had a previous high reading of prolactin levels (over 900 which is very high) and they suspected a Prolactinoma but incidently never even investigated this. I’d always suffered from migraines, was told I had anemia at the time which could have also contributed to the numbness and they sent me for an MRI. When I went back to the GP, they said there was nothing significant from the MRI and put it down to potential low iron levels, I was started on folic acid and soon enough the numbness passed.

In March this year, I picked up a bad infection that caused D & V. I figured my immune system was fairly low as I was running on empty and had a 6 month old daughter. Part way through this infection I woke up unable to see. Initially I put this down to being tired, because my eyes do become blurry if I haven’t had enough sleep and I’m waking up. I had total vision loss in me left eye and half of my right eye. Off to the opticians a few days later, they ummed and arred. Said it could be Optic Neuritis but wasn’t sure - I thought it might have been something to do with psoriasis as I know that people with psoriatic arthritis can pick this up but I didnt have any eye pain. I was told they would refer me to the eye hospital - a week later and nothing, I was still blind and hadn’t received an appointment. So I presented to the A&E department at the eye hospital. After being seen by numerous people who all mumbled between themselves, I was told I needed to see a specialist. So another 3-4 weeks and I finally see a doctor at the eye hospital who told me it was definitely Optic Neuritis. Every professional I’d seen leading up to this had told me it might be this and it might be down to MS in the most non chalant way. So I was very worried. Anyway she put my mind at ease and said she would order an MRI and not to think about MS because there are so many neurological conditions and issues that could be causing this.

I finally had my MRI a month or so later and have been minding my own business since then. I’d been away for a couple of weeks at some music festivals (I’m a musician and run a recording studio so ample networking opportunities for me.) Being in a field meant that I hadn’t received many text messages due to appaling signal, but when I returned home two weeks ago on the Tuesday morning I had a text to confirm an appointment. I hadn’t received a letter so had no idea what this was about. When I phone to confirm, they said it was with the MS department which I thought was strange. Went along assuming that it must be with the neurologist to discuss my MRI results.

When I arrived, the consultant had no qualms about telling me. Ah yes, so your MRI results show that you have Relapsing Remitting MS. That was it - he just came out with it, like he was telling me I had fingers, or two eyes. He showed me the MRI which showed several lesions on the brain and he compared this to my last MRI 3 years ago - low and behold on that initial MRI there was one lesion. I was never told about this, apparently this was insignificant, but I feel I should have been told! He drew some graphs, told me they could use steroids during relapses (I was so shocked I had no idea what kind of relapse I could expect, what it all meant), I asked about Vitamin D supplements and therapy - he said some people use it but there isn’t much evidence behind this, told me to check out the MS trust website and that a nurser would be in contact and he couldn’t find any information for me to take away but he will see me in a year.

I have no recollection of getting from the hospital back to work at my studio, I was in shock, had a panic attack in the car, broke down in floods of tears. I was actually due to rehearse for a wedding we were playing at on the Thursday, but it took 2 hours before I could even pick up my bass. I spent the next week and a half disappointed that I’d even woken up every morning. I was so low and angered that this had happened and I had been given no information and that I was going to end up exactly like my mother. How will I work if I’m self employed? I don’t want my daughter to lose her childhood like I did to look after me - and my partner - will he leave me? So much went through my head.

Anyway, it’s been a week since I’ve been that way and I’m slowly trying to get back onto the wagon, I’ve started myself on 5000IU of Vitamin D, I’m going back to the gym this week, trying to cut down on saturated fats (I’ve been vegan for a fair few years and veggie for about 10 before that so no longer eat dairy). I’ve been consuming as much information as I can about what I can do to help. I’ve chased the MS nurse and asked for an urgent appointment (they say it could be 2-3 weeks before I even see someone). I’ve been to the doctor to recheck my thyroid which was previously low, but I never started on anything, but my levels are now back to normal. They read the referral from the consultant I saw who broke the news to me, and it looks like he isn’t planning on starting me on DMT because I haven’t had enough relapses yet (research I’ve read suggests that the earlier these are started after diagnosis, the better?). I’ve been tracking various symptoms - mostly muscle pain, extreme fatigue and cotton wool brain which I’ve been putting down to being a new mother and also pins and needles in my arms and hands and more recently the feeling that my leg had just been set on fire.

Sorry for the massive post, I just felt like I needed to get it all out to people who may be in the same boat. I was wondering, should I have had a spinal MRI too? Why do people have lumbar punctures, should I also request this? I want to see the neuro-physio and dietician to make sure that I’m doing the best I can to stay healthy in a preventative measure. Should I also request a blood test for my Vit D levels? Anything else I should be thinking of asking?

And finally - does anyone have any positive stories to share on how they cope with this? My biggest fear is ending up like my mother, having only lost her last year it’s a huge struggle for me as I feel like I lost my entire childhood and start of my adulthood to MS and now that she’s finally at peace and I’m starting to do things I want to do without having to be consumed be caring for her, that MS has cropped back up to haunt me again. I haven’t had any mobility problems yet, but I’m frightened of being on stage and my legs going, or carrying my daughter and this happening. How does weakness creep in? Do you have some warning or do your legs literally go from under you? So many questions, so much anxiety - just looking to connect with others that understand what I’m going through!

Thanks in advance and if you got to the bottom of this, you deserve a medal!

hi amie

sorry that you lost your mum in such a dreadful way.

then to get a diagnosis of rrms on top of that - wow!

it is disappointing that you haven’t been offered a DMD (Disease Modifying Drug).

i would challenge them on this.

writing a letter to the hospital where you were given the diagnosis would be preferable to phoning.

the ms society put a lot of work into getting the agreement that DMDs are better offered as soon as possible.

as for the rest - vegan diet should be good, assuming that you are getting enough protein.

other alternative treatments are well worth a try:

  • LDN (low dose naltrexone) which is not available on the NHS but is not too expensive.

  • HBOT (hyper barric oxygen therapy) find your nearest ms therapy centre and see if they offer this.

  • pilates classes are fantastic to strengthen your core which will help keep you standing upright.

the weakness crept in after about 5 years in my case.

i’m still walking but feel a little vulnerable.

keep your head in a good place, carry on making music, enjoy your baby.

Hi AmieC I’m sorry to hear about your experience so far. Just to be sent home without immediate support is awful. I hope you get an appointment with a MS nurse soon. I’m not diagnosed but suspect MS. I have an 8 month wait to see a neurologist. I’m thinking of going private. I think I’m like you in that I too will want to do the best for my body even if the alternative therapy isn’t proven.

Hello Amie

The NICE rules about disease modifying drugs is that a person should have had 2 clinically significant relapses in the previous 2 years to qualify.

So if you want a DMD, if you have any relapses from now on, you should make your MS nurse (assuming you have one) or your neurologist aware. That way, you would then qualify for a DMD.

You should ask your GP to check your Vitamin D levels as it’s possible to take too much. It sounds like you are taking the amount that’s recommended but better to be sure.

I suggest that keeping a diary of your health would help you to keep track of what is happening to your body day by day. It then is easier to report changes to your neurologist.

It is a shocking time, to be suddenly confronted by an MS diagnosis isn’t something that you get over immediately. Take time to get to know your new reality. Find out all you can about MS, use the resources of this site (the About MS tab at the top of this page), or of the MS Trust. If you understand what is happening, it can help you to learn to live with it.

Best of luck.

Sue

Thanks for replying! Haven’t heard of oxygen therapy so maybe that’s something to look into. I don’t really have any pain, apart from what I assume is life’s aches and strains (but then is it?).

i just wondered how long since your symptoms first came to light? And what treatment you are receiving at the moment?

Sorry to hear you have such a long wait! I saw a private GP initially when I had the optic neuritis. He put my mind at ease and told me professionals shouldn’t be telling me it is MS until I’ve had an MRI and seen a neurologist. He really gave me the time to talk about my concerns but this was before anything else had happened. If I could afford it (currently in the middle of a house move), I’d definitley consider a going private, even just for a second opinion with a one off session with a neurologist. I hope you get some answers soon.

Thanks Sue. I know they recommend DMT if relapses occur within 2 years, but if they are 100% with the diagnosis, I can’t see why they wouldn’t want to start exploring this now given the research showing that the sooner it is started, the more effective they can be. I’ve also read the pregnant people often don’t get relapses during that time, however some people find they relapse shortly afterwards, which given my history could be a thing.

Having spent most my life around MS I always thought I knew a fair amount, but it’s so different being on the other side of the fence now. The hardest part is that it affects people so differently so there’s no real prognosis as to how things progress for individuals. I think if I knew what was coming I could prepare better, but you never can!

I definitely think it’s harder to cope with a diagnosis having watched your mothers decline over years. And having some knowledge, as you say, is a bit different once you’re on the other side of a diagnosis. You are right, many people do have a relapse after giving birth.

I do agree with you about the DMDs. They can tell from your MRI whether you’ve had ‘silent’ older lesions, and also if the lesions are in different places, that gives you separation in time and space. I wonder whether a neurologist could extrapolate form that information that you’ve probably had small relapses that you weren’t even aware of, and argue on your behalf that you qualify for a DMD. Some people have managed to get DMDs after a single relapse, just the fact of more lesions is often the key.

And as you say, you don’t ever know what’s round the corner, so if you can, do try and get a DMD, it’s an insurance policy. Meanwhile, enjoy your baby and motherhood. With a bit of luck, you’ll soon get a decent DMD and be relapse free for years to come.

Sue

Hi Amie,

sorry to hear you have had your mother with MS. Must be so scary. I found out late last year that I might have MS to have it confirmed by Neuro dec it was. Merry christmas!. any way i too haven’t been allowed DMT same story 2 significant relapses, such a joke we have th disease but have to qualify for treatment. Im off to neruo Tuesday to see the results of a MRI scan I had few months ago to see if any changes, Im kinda wishing there are so I can maybe get DMT’s but thats not a healthy things wanting too see further deterioration. catch 22

I found it hard at first worried bout the what ifs, cant get sick i have no sick pay, have no partner will i find one that wants to take on someone with ms, but i just try to get one with my life not planning too far into future just living best I can. Been a challenging ride and Im sure that Ive got more bends coming along . Youve got a family, focus on the love they bring you to keep you going.