I have just been diagnosed with ms (yesterday) I am 29 years old and trying to convince myself this is not the end of the world!! I have severe numbness in both legs and feet (reason for all the testing) and the dr is putting me on high dose steroids to help ease symptoms. Has anyone had any experience with this and will the steroids help?
Thank you so much for your reply this really has been a lot to take in! I am hopefull the steroids will work and won’t have too many side effects but because I work the the hospital I’m going to need to shield while I’m on them.
An m.s. diagnosis is life changing - yet nothing actually changes.
You’re not going to pop off in a few weeks - you’ll get up each day and do what you did pre m.s. diagnosis.
But the m.s. will always be an unwelcome feature in the background.
How will my relatives/family react - should I tell them - should I tell my employer - what about drugs/medicine.
A diagnosis of m.s is a hammer-blow and we have to make the best of a bad job. Most people do well on steroids - it’s up to you to read about the other drugs that are available and find the one(s) that you think would be best for you.
Don’t know if you’re working - you don’t have to tell your employer - most employers are good - if not you are covered by the Disability Discrimination Act.
Difficult one re telling the family/relatives - some people react favourably but in my experience some may not.
You will read about the various stages of ‘coming to terms’ with m.s. - anger/denial/grieving/acceptance etc. Personally I never was in denial nor have I ‘accepted’ the m.s. (think I’m still angry!) So accept how you feel because that’s how you feel!
One of the problems I have is planning ahead - I think if I plan it’s tempting fate and things will go adrift - on the other hand I can’t sit on my bum and do nothing. So I make plans but in the back of my mind there’s the worry things will go awry.
Try not to become too dominated with your m.s. - find some time to think/do something else - and your nearest don’t want to hear about your m.s. all the time.
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Hello Is this real (sorry that it seems it is real!)
Welcome to the forum - one place we’d all rather not have the qualifications to join. You’ll find that our members will do their best to help as you have questions and worries about MS. It is a particularly horrible time to be diagnosed, during Covid Lockdown.
With regard to steroids, they are not guaranteed to work, but often do. They are not nice drugs to take, they tend to leave you with a horrible taste in your mouth (try taking them with milk and through the day nibbling mints helps). They can make you a bit edgy or agitated. Make sure you take them in the morning as they can leave you sleepless. Have a look at https://www.mstrust.org.uk/a-z/steroids-methylprednisolone for more information on steroids.
I’m with Cracowian with regard to acceptance of MS. I’m bloody angry too and it’s been part of my life for 23 years. It’s certainly not required to accept it. All you really need to do is to start learning about MS, about drug treatments, and listening to your body. Keeping a diary is a good idea to help keep track of your symptoms.
Best of luck.
Sue
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Thanks for the reply. I have noticed the horrible taste in my mouth but usually it goes away after an hour or so, it’s the dry mouth I’m struggling with. I seem to have moments of severe hyperactivity which I am told is normal (my partner thinks it’s pretty funny when I talk 10 to the dozen). I honestly at the moment don’t feel anything, no anger, no sadness so I kind of feel like I’m waiting for it to hit me. I’m sure as tome goes on I will just learn to pop it to the back of my mind when I’m not having too severe symptoms and it’s really good to know there are plenty of people on here I can talk to!
Thanks for the reply, I work in the hospital and have already told my employer (she popped over to visit while I was in having testing) she’s been very supportive and has passed it on to occupational health and they will apparently put things in place to support me if I need it. My family have been supportive so that’s always a positive.
Hello everyone, I’m new here. I was diagnosed with MS on Thursday, a day before my 30th birthday (I’ve read that I’m in the common age range for diagnosis). I’m waiting to be contacted by an MS nurse and waiting for the covid-19 situation to be clearer because my neurologist doesn’t want to prescribe me disease modifying drugs right now as they suppress the immune system. I’m a bit concerned about delaying the start of my treatment, but my neurologist said that waiting 3-4months shouldnt have any detrimental effects. Anyway, just thought I’d say hi!
Welcome, I’m new too was diagnosed last Wednesday. Seems we have a lot to learn about what’s happening to our bodies.
Sorry that you have also been diagnosed. It’s quite a lot to take in but I’m very grateful that I’ve been diagnosed relatively quickly since experiencing my first symptoms. Have you had any follow up contact yet? For me, it doesn’t feel real yet because I was told over the phone, which was a strange experience in itself, I think when I speak to the MS nurse (hopefully soon) it will start to sink in.
I was diagnosed in hospital so was lucky enough to meet the ms nurse before I was discharged. She gave me a phone number which I have since used because I was in a lot of pain and she got back to be fairly quickly and prescribed gabapentin. She also phoned a few days later to check in and said it would be at least 4 weeks probably more before I see the neurologist about dmd’s. hope you are doing ok with the diagnosis, I started off totally fine then a few days in it hit me hard! Now I have good days and bed days. Xxx