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Diagnosed with RRMS last week

Hi everyone, I’m 45 and was diagnosed with relapsing-remitting MS last Wednesday. It started when I developed numbness down my right side and then leg in mid-Aug so I went to my GP. He referred me to neurology and 3 weeks later I saw a neurology doctor, then 3 weeks after that I got MRIs and lumbar puncture done. Another 2 1/2 weeks after that I got my verbal diagnosis. Since my initial GP visit my symptoms have spread to my left leg and up to my left side and just in the last few days I’ve developed tingling in my left pinky and ring fingers and a lightheadedness, particularly whilst walking. I can still get about and drive but I’m worried things will just continue to get worse.

I work as an artist and prop maker and I’m terrified of losing the use of my hands. I just feel I’m going to lose everything in one fell sweep. I know that is the same for everyone here but I just feel so down about it. My work is my life and my passion and it scares me that I will lose the ability to do it.

I’m really grateful that my GP and neurology took my symptoms seriously and saw me relatively quickly. I’ve been reading in posts how many of you have waited years and been told you didn’t have anything wrong with you which is outrageous.

On Wednesday I was shown my scans at the diagnosis appointment, which I found really scary, and was pointed to all the little “white matter” dots on my brain and a larger one in my spine. The doctor just kept saying, “…and another one here, and here, and here…”. I just wanted to run out the room and was shouting in my head for her to stop saying it. My mum was with me thankfully which was a great help, she is an amazing lady and I’m thankful I have her.

The diagnosis was confirmed because I had told them about a left side facial numbness I had about 3 years ago. I was referred to neurology by my GP then (a previous one) but I never got an appointment and I never followed up as the GP said it could be over 6 months before I would get one. And so, the numbness cleared up, though I still have residual numbness in the roof of my mouth and I kind of forgot about it until this all happened from mid August this year.

The neurology doctor was really calm and kind and told me about what they had discovered clearly so I understood but I was in shock. She asked if I had any questions and though I asked some arbitrary questions like what may have caused it, which of course she couldn’t answer, it only occurred to me much later that I wasn’t really given much information on what happens next. She did give me a phone number for a specialist nurse who I could speak to if my symptoms worsened but otherwise said that the MS team would be in touch at some point but that it would be months before that happened. I’ve seen in posts I’ve read here that that seems the norm? I just can’t believe they didn’t offer me any drugs or treatment that could relieve my current symptoms now as they have been going on and progressing for nearly 2 1/2 months and don’t seem to be going away. If I have to wait another 3 months before even talking to someone surely that will cause more damage to my brain and spine? If anyone has any advice on whether getting some sort of treatment sooner would make a difference or if it would even be possible, I’d really appreciate it.

I do feel a bit lost and worried that waiting will progress this disease quicker than it needs to. I only found this forum through Google search as I wasn’t given any support information other the phone number of the specialist nurse which I was told to only phone if my symptoms got worse. As they have increased/changed I’ve decided that I’m going to phone the nurse on Monday and ask the questions I couldn’t think of before but if anyone has any input I would appreciate it. I’m in Glasgow, I know different areas will probably have different ways of going about things. My emotional health has taken it’s toll for sure as it seems my world has suddenly crashed down around me.

Sorry for the long post but I live alone and only spoken to my mum and messaged one friend about it as I can’t face telling any of my other friends yet so I think I just needed to get it all out. Speaking to people who have gone through it already can only help and I’m grateful to have found you.

Thanks so much for listening.

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@Daisypaw - Glasgow? OK - I think you are going to be fine. I have friend in Bearsden with MS who is getting great support and is even part of the research group.

My diagnosis experience was very similar to your own - I was terrified and upset, but then I met my MS neurologist and the MS nurses. Call the MS nurse. She will get you some great information from both the MS scoiety and the the MS trust in the UK.

My MS neurologist sat with me for an hour and asked me about my attitude to Disease Modifying Drugs after I had read the booklets and met some very patient local coffee groups. He said that being a “naive” - not taking anything - was not really a great option. I read the manufacturer’s sites and felt that Ocrevus (Ocrelizumab), with its very limited side effects and high efficacy would be the one I wanted to try. I was very apprehensive, but my first infusion stopped all of my symptoms overnight and I woke wondering what was wrong. I could feel the sheets rubbing my toes!

My symptoms have not ever returned and my new neurologist has introduced me to a helicopter maintenance engineer, a builder and a GP all of whom are still working and enjoying life.

I found that increased Vitamin D - up to 5 times the daily dose - helped me and that accepting that I will get tired - I work in TV - is something that I can live with. Don’t make excuses to your unit managers, but do let them know. You will be amazed how many people or their families have people like us and will not be judgemental.

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Hi Daisypaw,

Being frightened and low is completely reasonable considering your news. I am impressed that you seem to have a good medical team and great support from your mum. It is nigh on impossible to predict how things might change. Now is a good time to learn how to listen to your body, so that you will have an idea if things are getting better or not. When I was at this stage I got carried away and I assumed every little thing was MS related when in fact some of it was normal day to day stuff. I totally get your desire to act quickly to reduce the impact of any changes. Everyone’s MS has it’s own agenda and timeline and sometimes waiting patiently (no matter how impossible) can be OK. If you are worried that waiting is not the right thing speak with your MS nurse, if that does not help you can try a private neuro consultation, but there are no guarantees that this will be much different.
Wishing you all the best.
Mick

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Hi,
i see my MS as a new ‘hurdle’ i have to jump in life. I also have RRMS, was diagnosed in 2007. Ups and downs for sure, but i see my MS as a second person in me. We work alongside 50-50, sometimes the MS has the upperhand, and im a bugger for not listening to it, which i then suffer the fatigue/frustration side. DON’T let the MS be in control, as i said work alongside it, it’s a relationship (how i see it).
People around me that needs to know, know. If people asks questions, i’ll be honest. A must though is work though. Colleagues will get worried if you cant do tasks you used to be able to do, side effects (if any) for drugs given, or a relapse.
When i was diagnosed with RRMS, me and my wife now discussed my RRMS, wrote questions for my next appointment to ask. In a way its walking into your appointment with a bowl of water and not a sieve with water (if that made sense).
Ive been on Rebif since start of 2008, its 3 injections aweek, side effects comes and goes but i think it’s, if your body is feeling down, the med till find your week spot.
To me, my RRMS is a challenge on a daily basis. Since being dianosed with RRMS, i lost weight, quit smoking, got married to my angel, moved away, and have 2 lovely boys. Without being diagnosed with RRMS, it wouldn’t of given me a kick up the backside (soz for the language).
Im wottling on now, but im now 37 years old, diagnosed around 22-23 years old. Only now i have come onto the MS society forum, i’ve always avoided looking into my MS and asking for help/advice as i was scared. Past 2-3 years it’s starting to have a more dominate appearance. No more 50-50 more 70-30 to MS. BUT i will still try and work alongside it.

Stef.C

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Thank you @Mogace, your words are encouraging. I am very grateful for the care I’ve had so far. It was amazingly quick especially with the current times we are living in. I suppose with having that experience I then felt a bit pushed off a cliff after my diagnosis. I will speak to the Nurse and see what they say. I think knowing it’s similar to other people’s experiences (if not what anyone wants) is comforting. Thanks again.

Hi @JD-berks, thank you so much for your quick reply and encouraging words. I’ve been up and down emotionally and got into a bit of a tizzy last night.

So glad to hear you had success with your treatment. Can I ask how long you had to wait for treatment after your diagnosis? It’s this open ended waiting game that is causing me more anxiety which I’m guessing is also not good for the condition.

I’m a self-employed prop maker sometimes working in TV too as well as theatre and film but I usually work by myself from my workshop so just have clients rather than managers. I had been recently been put forward for a 6 month TV prop job (though not confirmed) so now I’m wondering how I’ll be in 3 months with no treatment to stop symptoms progressing.

Also the Vitamin D, I had separately got some recently as experts on the radio were talking about the long winter nights and that we should all be taking it, though maybe now a much higher dose than OTC. All these things I’ll ask the MS Nurse tomorrow.

It’s been good to be able to write all these worries and questions down as it all just seems a muddle of ‘what ifs’.
Thank you again for being a sounding board, really appreciate the help and advice.

Hi @stef84 , thanks for your reply. You have a great attitude and perspective towards it all. I’m usually pretty resilient and have always gotten back up fairly easily but this was a real sucker punch. I know I’ll come to terms with it eventually and adapt, what else is there to do? But it is pretty darn scary not knowing what will happen.

It’s been really helpful to hear everyone’s experience. I feel a little more calm about things and have worked out my questions to ask the nurse tomorrow, rationally instead of hysterically. Thank you again and I hope you can back to your 50/50 if possible.

Hi @ChrisB, thanks so much for your message. It has been really great getting to “meet” people
who have been in the same situation and are still getting on with life. I know it can be different for everyone but my main hope is I still get a good few years of mobility before anything stops me from doing what I love. I’ve only just got established in my current career after wavering all over the place and thought I can finally start living my life; have a career I love, get a dog, get a house…all the stuff other people have. When I got the diagnosis my first thought was that those dreams had all gone down the pan in an instant. I feel a little more optimistic now after getting replies from you lovely people and reading other people’s stories.

Obviously, I know I have to be realistic and that worst case senarios can happen but I’m pointing a little more towards the thinking of the Now instead of a Maybe future. I can live and work now, so that is what I need to do.

My next hurdle is to negotiate treatment. That’s madness you were expected to be left with no treatment for a year. I’m glad you went elsewhere and got a better service. It’s something I shall be looking out for. Thanks again for your story and encouragement. Everyone’s words really have made a difference.

@Daisypaw, my neurologist was very good and did not rush me into a decision on which DMT to use. In fact in the tiem I took I went to a job in the USA and had what I thought was a mighty relapse, ending up on a hotel bedroom floor unable ot get up. In fact it was just a nasty virus and htat in itself taught me that not eveything is “pure MS”.

My MRI and blood tests and a review took 6 months so I got my first pair of insusions after about 7 months from diagnosis. There was not difference in the MRIs taken only 8 months apart and there has been no change at all since then. I can’t tell if this means my version of MS is very mild to start with or that the drugs are really that effective. My feeling is that it is all quite variable and had I not tripped over a paving stone and caused a pretty major knee injury which reminded me that my little toe often felt like my toenail was caught in my sock perhaps I might not have met the right team.

Check with your nurse, but as @Mogace says sometimes it is just life not MS slowing you. I have met a builder who had no treatment for 15 years and was having real problems until he moved and met the right team. 2 or 3 months probably won’t make much difference, but being careful about colds, flu and of course covid will be your best moves. My impression from my mate in Bearsden is that you are in a very reactive health care area and you will be looked after well.

Don’t forget to check with us all here to see if we can help.

It is usually a good plan to get on with life and not limit yourself by guessing what MS has in mind. As the neurologist said to me at dx 20+ years ago: ‘Don’t go home and widen the doors just yet’. He was quite right, literally and figuratively.
I am sorry about your dx.

Thank you @JD-berks, that is some sage advice. Fingers crossed my scans don’t change as well. I know it is all very different for each individual but I’ll hold on to that thought for the time being. It definitely made me feel better when I read it.

That must have been pretty scary getting that virus when you were away from home, it definitely makes you think and worry about every little thing which then leads to more stress and possible triggers but glad to hear the good reviews from your Bearsden friend. I’m reading we are particularly susceptible in Scotland with low light levels but I’m taking that to mean it’s taken seriously so that can only be a good thing.

I tried to phone the Specialist Nurse this morning but only got to leave a voicemail that will be replied to within a couple of days. I then called my GP Surgery and promptly burst into tears to the receptionist. It’s all just bubbling under the surface but I’m able to cope as long as I don’t talk about it which I know isn’t the best policy. Hopefully that will get easier. I couldn’t get an appointment today but the GP surgery has said my GP will get me on a phone appointment tomorrow morning. I just hope I can keep it together on the phone. They have been really good, it’s just this bit of limbo that taking its toll. I’m much calmer now, been trying to get lots of small life stuff done, also to distract me. Currently waiting in for the plumber. Never thought would be preferable activity to anything.

Everyone’s thoughts are greatly received and bring me back down to the ground. Thanks again.

Yes, you’re absolutely right @alison100. Thank you for that and kind wishes. As you will know, it’s a lot to take in. I thought I was getting a slightly better handle on it but this morning’s tear fest shows I’m no where near yet. But not widened the doors just yet! Thank you.

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