Hi all, after numbness/tingling sensation in both hands since 2024, I finally had my MS diagnosis today.
Had a feeling it was MS but still feel devastated/ in shock/ scared of what’s to come etc
Any advice/reassurance would be appreciated
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Hi Chloe. Sorry to hear that. I suppose, if nothing else, at least now you know what’s going on rather than contemplating the unknown. I guess all you can really do is try to relax into it and trust that you’re in the system and folks are aware of you.
I know it’s easy to say but, try not to let it worry you too much. There’s a world of information at your finger tips so, if gaining a bit more knowledge on what’s happening and how it may pan out helps to settle you a bit, do that - it certainly won’t do you any harm. For now, all you can really do is look after yourself (rest well and eat right and, take advice from your medical team.
Good luck and, all the best x
Jon.
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Hello, Chloe, and I am sorry to hear of your diagnosis. It is never nice news to get even if you have seen it coming. There is nothing nice about the feelings and fears that swirl around in a person’s head after a life-changing diagnosis. All I can suggest is you just take it one day at a time while the news sinks in. It is surprising how quickly the demands of everyday life - work, bills to pay, family to feed etc - steadily shape your days back into something that feels weirdly like normal again. A new normal, but surprisingly like the old one in many ways. For now, just hang on in there.
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Hi @chloesparks10 . Im sure that absolutely everyone who has MS will recognise those feeling of shock and fear about the future. My sympathies to you. In terms of reassurance well, everyone’s MS is different but the outlook for MS folk is so much better than when I was diagnosed 19 years ago- at that time there were just 3 ‘disease modifying treatments’ whereas now there are 20 or more and most of these are a lot more effective than the original 3. There isn’t a cure for MS but the newer treatments do slow down the development of symptoms dramatically so do take heart from that . Also, the pace of development of new and better treatments is pretty fast these days.
My story is that after diagnosis I had about 8 years before symptoms started getting worse and even now , at soon to be 72 years old, the only thing that really troubles me is my right leg which sometimes makes walking difficult. It’s a bit of a nuisance and I think I will soon be using a Rollator around the house but ‘mustn’t grumble’ etc.
Do you happen to know what ‘sort’ of MS you have been diagnosed with ( Relapsing Remitting?)
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Hi, I have relapsing remitting MS, so far my only symptom seems to be the constant numbness/tingling in both hands.
I know the treatment is better now, just still feel abit overwhelmed and scared of the unknown of what’s to come.
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Hi @chloesparks10 I am trying to think of something useful and helpful to say and hope you might find something to a take from this.
Yes it is an overwhelming and scary diagnosis. A lot of people including me talk of a post diagnosis period of ‘ grieving’ . One month I was getting on with life quite happily and successfully the next month I saw a gloomy future and a loss of my ‘identity’ as a generally fit, healthy , successful and happy guy. Took me quite a few months to recover from that rather dark period and regain some perspective and confidence. Life carried on, I carried on working , wasn’t too affected by MS ( plus as a big thing and in spite of me saying to my then girlfriend that I would quite understand if she wanted to break up with me, we stayed together and later married).
One thing that helped me enormously was when browsing a book shop for anything on MS I came across a book ‘Overcoming MS’ by an Australian Professor of Medicine who has MS himself. It’s not actually about Overcoming MS but about living well with MS through diet, exercise and meditation/ mindfulness. His work and suggestions now appear in a website and although I’m not quite sure how it’s organised , there are various events, activities , resources and networks based in the UK .
I’ve been following the various suggestions etc for years now and do think it’s worth having a look at the website. If nothing else , the recommendations etc have helped keep me generally fit and healthy as possible and given me a sense of having some positive things I can do for myself other than take my weekly injection of Avonex- a feeling that I have some control over my future.
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Chloe
I am a GP I have primary progressive ms
There’s no doubt it’s overwhelming and it takes a long time to start adjusting
Sharing the news is tricky and sometimes guidance is lacking. I think you should share the information with your nearest and dearest and mop up their support. But I believe there are benefits to not sharing the information with all and sundry and maybe even friends
Hang on in there and await guidance from your multi disciplinary team
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Hi Chloe,
I am sorry to hear about your diagnosis. It’s really normal to be feeling all the things you are feeling. And it will take a while to process. Try to be kind to yourself and give yourself time. Don’t rush to make any big decisions.
There are some really effective treatments now, that didn’t exist even 5-10 years ago.
The treatment I take, Kesimpta, reduces the risk of relapse by over 70% and reduces the severity of relapses if they do occur.
There is lots of info on the MS Society website and MS Trust website. Best not to google. Stick to the websites I’ve mentioned (that’s what my neurologist advised).
We are here to talk to, and we’re a friendly bunch 
Go gently
Alison
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Thanks Alison
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Thanks Phil
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I had the same in my second relapse. Hands permanently numb. Tingling in both hands. My hands recovered fully 9 months later.
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Ah mine haven’t recovered and it’s been since August 2024, never had a day since where they feel normal. Bit confused if this is classed as a relapse?
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Most likely yes. If both hands and both arms have gone numb all of a sudden (and for that long) then yes, it’s a relapse, and the culprit could eventually appear as a lesion in the spine (around the neck area, the Cs). The MRI would indicate this. I also had sensory issues, I couldn’t feel holding small items. Mine lasted very long and literally vanished all if a sudden overnight when I went to Mexico for 3 weeks. I am pretty sure the sunshine helped.
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Yes I have a lesion in my spine and a couple brain lesions. I really hope my hands return to normal or at least better with treatment.
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My personal recommendation would be to work closely with your MS nurse and the neurologist. I am sure they have done loads of tests. They may suggest something to help your hands. My MS nurse suggested exercise and swimming, and I have found them helpful in the past. They also monitor my vitamin D closely and I take vitamin D supplements as suggested by the neurologist. My current DMT (plegridy) seems to work. They will suggest a DMT to you. It won’t fix your hands but it helps you avoid relapses.
Trust me, things get better as we always find a way.
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Hey,
I acted like the condition didn’t exist… It does exist, I can only speak from my own experience but unfortunately the fatigue is real, this moment right now I’m suffering from extreme fatigue, but I cannot sleep my mind is mush, I received a letter today and couldn’t understand it, I’ll work it out when I’m better, what I want to say is, don’t be afraid to ask for help. But also don’t be afraid to live your life. If on the day you feel like crap… That’s what happens. But in a couple days or a week you’ll feel better. On the bright side I’m so emotional, I imagine I feel like a teenage girl, so emotional, every emotion is like massively enhanced, I feel like I understand and appreciate the world around me more….. I also get a lot more frustrated with it 
. Good luck I’ve had MS for about 3 years. It’s scary, takes some getting used to, embrace it, for me it was my eyes. Try to get comfortable with it no matter how uncomfortable it is…. Because now it’s life.
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It’s definitely not a stupid question at all. The specialists reviewing the images are trained to look for any abnormalities, but it’s always a good idea to mention your specific symptoms to the staff on the day so they have the full context. Wishing you the best of luck tomorrow—I hope the scan goes smoothly and you get some clarity soon.
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