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Newly diagnosed and feeling lost

Hi, Im totally new to this site and not sure I am posting on the right page.

I was diagnosed with RRMS just over 2 weeks ago after going private to a neurologist and for MRI scan. I have now been referred back to NHS for medication but my appointment with neurologist is still another 4 weeks away. I am guessing its after that i get assigned an MS nurse. In the meantime Ive had little information and advice and due to the nature of my job i am signed off work. My GP gave me number of MS nurses and i left a message last week but no one has got back to me.

The neurologist that diagnosed me was very positive about me leading a normal life and Im trying to cling onto that but in the meantime I would like a bit of reassurance and information in order to help manage it. My legs are quite heavy /stiff which is my main concern and im hoping they improve and wonder if certain exercise will benefit me, something i could be starting now, I am just feeling a bit frustrated by it all, is this normal?

Thanks

Sarah

Unfortunately Sarah now is the worst time of MS. It is probably still attacking you; that gives you so many questions you want to be answered.

Here is a good site https://www.mstrust.org.uk/ and of course this society.

This will explain the tests you have just been through Diagnosing Multiple Sclerosis

I’m only newly got it like you; well I was diagnosed 44 years ago when there was nothing; no MRIs; no different types. Nowadays there are many things to help but this will all be explained to you in four weeks.

It is you youngsters; newly diagnosed that there will soon be an answer for. Be careful when Googling about; there some strange things out there.

George

Hi Sarah,

Feeling frustrated is absolutely normal - you doubtless want to get your existing symptoms under control and understand what your choices are re. disease modifying drugs (DMDs) so you can start managing this condition.

Try to be kind to yourself in these next four weeks and, hard as it sounds, try not to stress. If you have chance, it might be worth using this as an opportunity to do a bit of background reading on RRMS and the available DMDs so you can have a sensible and productive conversation when that appointment comes round - and you can make sure you get all your questions asked. That said, stick to sensible sites - this one, MS Trust and Shift are all sensible and moderated (some of the other comments boards and forums can get a little crazy).

Please do cling on to the hope that you will be able to live a normal life. I know I do. MS is a “snowflake” disease - highly individualised - but I’ve summarised my story and outlook below in case it helps.

  • In Feb 2016 my toes and groin went numb. Not painful or disabling - just odd. An MRI of my lower spine to rule out an emergency spinal issue showed “two t-2 hyperintensities suggestive of demylination”. A week later, via a private referral to a neuro and a full CNS MRI, I was told I probably had MS (as I had lesions all down my spine, brain stem and throughout my brain). This was confirmed a week later, at a further private referral to an MS specialist neuro.

  • I had a three month wait to be transferred onto my MS neuro’s NHS book for treatment. We used this time to discuss available DMDs (I knew I wanted lemtrada from the outset) and have a further scan (in June - 3 months after the first). This showed one new brain lesion - sufficient to diagnose me with “active” RRMS and qualify me for Lemtrada

  • I had been given steroid tablets in March and my numb toes and groin very quickly cleared up. I’d had no new symptoms and my scan showed that a number of my old lesions had partially repaired (hooray!). Touch wood, a year on and I’ve still had no further relapses.

  • I think of myself as active of mind and body. I was (and am) fit an well. I’m a senior corporate lawyer working for a FTSE 100 financial institution and manage a team and busy day job. I commute in and out of London each day and go to the gym at least once a day. I’m also a long distance walker - and even on the numb toes was trekking 20+miles a day at weekends. Somewhat ironically, I’m fitter, faster and stronger than before diagnosis - possibly as a result of every workout and every PB feeling like a punch in the face to my MS

  • I’m hopeful that by taking early, aggressive treatment against my MS and by continuing to live a healthy, active and balanced life I give myself the best possible chance of staying this way. I received Round 1 of Lemtrada in August 2016 and am just gearing up for Round 2. So far so good, but this is a marathon and not a sprint.

-When I was diagnosed I felt like the bottom of my world had dropped out. The messages I tell myself now are:

(i) MS is not necessarily a fast track to a wheelchair. Something like 80% of pwMS don’t need one 20 years after diagnosis. And there are fab people of this board living positive lives with mobility aids if it comes to that

(ii) improvements in DMDs over the last few years should that statistic in our favour. MRIs only started being used widely in the 1980s, and the first DMDs were only available in the 1990s. Today there is better choice of drugs with increased efficacy - and as of 2015 the ABN have issued guidance promoting the early use of these drugs - and there are more drugs in the pipeline. Whilst there is still no cure, it is not the disease it once was

(iii) there are drugs and treatments that can help alleviate symptoms caused by relapse

(iv) there are things we can do to help look after ourselves, to avoid co-morbitities that could make MS symptoms harder ro deal with or to help manage the MS itself (e.g. Vit D3 supplement, healthy diet and exercise, sleep)

A year after diagnosis there is not a day I don’t think about it - but I consider myself lucky with my (lack of) on-going symptoms and the availability of treatment. I value my health in a way I didn’t before when I took my wellness for granted. Im getting married next May and we are looking to buy our forever home - which at this stage will not be a bungalow! If I get mobility issues down the line, we’ll cross that bridge when we come to it.

So I see my MS as a shadow that is with me everyday, but for the moment the sun is high in the sky and it casts little shade on my life. I’m wary of the day the sun will start to set - but for now life is god and im optimistic.

Very happy to talk off line if it would help

K xx

Thank you for your reply, I will just need to be patient and try to stay positive. I’ve ordered information leaflets from these sources rather than reading too much online. Thanks agsin

Sarah.

Hi Katy

Thank you so much for taking the time to reply to me, you sound very positive and its good to read how well you are with MS.

i have ordered information booklets and will definetly find out as much as I can before my appointment to get the most from it.

My symptoms started around 14 months ago with numb fingertips on my left hand then my whole hand and heavy feet and legs now and again, after a blood test I was told I had a low vitamin B12 level and got injections for this which initially helped but I was then refused further injections so they werent sticking to the guidelines and just said I should have enough, My symptoms got worse and I was fobbed off by 4 doctors who said it was a mystery and was offered anti depressants and to get rid of me I was told I was being referred to a neurologist which was roughly 10 months waiting list. At the start of the year I was struggling with stairs and had numbness in both hands and doctor agreed to start me on B12 injections again as level had fallen. Around this time I had facial spasms and the left side of my face was distorted, my doctor took one look and asked if I had MS in my family. I then decided I couldnt wait any longer and went private, I think I knew at that first appointment and then after my MRI scan I had it confirmed.

I feel extremely let down by the NHS and wonder if I could have had a diagnosis sooner but I guess I could still be waiting on my neurology referral so am a lot further forward than I could have been.

Thanks again

Sarah xx

Hi Katy

I also wanted to thank you for your really positive message … I’m not diagnosed but have seen a neuro and will be having my MRI a week tomorrow.

At a time when all sorts of terrifying thoughts are going through my mind, what you said has given me some perspective and helped to calm me down a bit!

Thank you :slight_smile:

Hi Nic, I can totally relate to that fear you have and never thought I’d get through it! It was never going to be a pleasant experience and think I knew before my scan what the outcome was going to be for me. Stay strong, thinking of you.

sarah x

Hello, thanks for your message :slight_smile:

It’s odd, because I seem to go between being fairly sure that I do have it and feeling quite calm and accepting about it all, then a while later I’m sure I have it but feel like I’m going to scream and sob. Then I remind myself that there are worse things and many people live happy, positive, fulfilling lives with MS. Then in the next moment I’ve persuaded myself that the symptoms could all be explained by other things and I’m fine anyway. Round and round in circles, my poor brain!

I’ve currently got optic neuritis which serves as a constant reminder of what’s going on, I don’t think that’s helping really. The not knowing is pretty rubbish isn’t it. At least I’m in the system and on the road to figuring out what’s going on.

x