22 and newly diagnosed with MS - Scared, worries and confused

Everyday living
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Hi all

I was diagnosed with ms early this year, however I kept putting it off and telling myself that it wasn’t MS. I have recently had an MRI scan… (again) and they have told me I have a significant amount of changes to my brain since my initial scan. To be honest I feel sick. I feel confused, angry, upset and very depressed. I don’t know what to do or how to feel. Even writing this message has made me cry.

My MS nurse has suggested trying medication but I really don’t want to be on medication for the rest of my life. I’m only 22. I’m currently training to become a teacher and I do not want any side effects to affect my chances of qualifying.

Is there anyone gone out there in my position? Could anyone give any support or advice about what they would do or what they have done in the past? I can’t seem to accept the fact I have MS when I feel ‘normal’

Thank you so much

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Hello

What an absolute kicker, diagnosed with MS at such a young age. I am sorry. It’s a sod of a disease no matter your age at diagnosis, but I’m sure to be at the start of adult life you just want it gone, out of your life and finished with.

Unfortunately, MS is a contrary beast, it won’t just vanish if you ignore it. Taking a disease modifying drug (DMD) is like having insurance on your car. You may not have an accident, but if you do and you’re uninsured, there are all kinds of problems to be faced. Having relapsing remitting MS means not that you ‘might’ have relapses. It almost certainly means that you ‘will’ experience relapses. So the insurance policy of a DMD is more important than anything.

A DMD is supposed to reduce the number and severity of relapses. Their effectiveness is balanced against the risk of side effects. Some of the DMDs - the older style ones - have low relapse reduction rates but few side effects (eg Copaxone). That would mean you’d be taking the drug for a good long while. But it wouldn’t necessarily impact your life in any way. The relapse reduction rate is low though, only about 30%.

The mid range of drugs like Tecfidera, have a better relapse reduction rate (about 50%), but more side effects and again, mean taking on an ongoing basis.

The highly effective group are much more effective, but the risk of side effects is higher.

Have a look at MS Decisions aid | MS Trust The decision aid tool helps you to see the benefits and the risks for each drug. You’d need to find out what your neurologist is prepared to give you, but it’s definitely worth considering.

In your position, and given your age, if you qualified for it, I’d give Lemtrada a serious look. It’s got an amazing relapse reduction rate anything upwards from 50%, but many people are disease free for many years (or forever) without the need for ongoing drugs. It has a big side effect potential, but for the benefits, it might be worth taking the risk. And it’s an infusion that you take 2 or maximum three times, each dose a year apart.

You could have a look at the forum on https://shift.ms/ There are a lot of younger people on that forum, many of whom have taken the riskier more effective drugs. And I dare say, were probably as keen as you not to take any drugs.

It truly is extreme bad luck to get MS, but once you’ve got it, you need to think of ways to make it be just a small part of your life. And taking a DMD is better than suffering disabling relapses. Believe me, I know.

So, as Val said, talk to your MS nurse, give drug treatment some serious thought, and make sure you do everything else you can, diet, exercise, vitamin D supplements, downtime and proper rest.

Best of luck.

Sue

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Hi buy Judy Grahams Book MS Naturally,it really help me when I was first diagnosed (it gave me hope)

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I was confirmed as having MS back in August. My Consultant wouldn’t/couldn’t confirm it as a diagnosis as I have no history of any relapses as far as I know. Thankfully he was able to push DMD medication through for me. He has recommended 5,000 “units” of vitamin ‘D’. Sadly, my GP can only supply it in batches of 2,000 “units”. So, it’s either pestering the GP and paying prescription charges or buying it online and paying. Interstingly, MS does not come under the free prescription list.

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Hi there I’m 29 and for the past five weeks I have been really unwell. Flu like symptoms, episode of double vision amd lose of sensation on my right side which cleared, then my right eye vision started to deterorate … feeling extremely tired aching amd really bad headaches amd pressure. Finding it hard to do anything. Also not been eating well . I was put on steriods and my right eye vision isn’t as bad now. I had a mri which shows Demilanation patches of nerve damage . Amd bow I had to wait up to 6 months to see a neorolagist for a diagnosis amd treatment :-/. . I feel so unwell . They said to Try exercise amd think positive could have been worse and how I’m healthy young woman amd will live a long life but feel so unwell and so worried if anything else happens especially as iv got two young girls aswell. I’m finding it all extremely hard . As soon as i get treatment i imagine thinhs could be bettwr its just a horrible wait for my neorolagist referred thats taking time many thanks

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My initial problem was from losing 100% clear vision in my left eye. I was offered intravenous steroid treatment over three consecutive days 24 miles from home and with no chance of getting there as driving isn’t allowed whist wearing a canular needle.

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So I should push my doctor to hurry things up. Amd vitamin d? Is your vision back now? Mines alot better then was. Think the steriods have been helping but also I think thw steriods have been making me feel alot worse in all the other ways. Feel so alone woth all this happening amd scared.

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I haven’t been to the doctor in a while. He’s very good but I’m not sure is completely au fait with MS. the vitamin ‘D’ could be done at multiples if the 2,000 units which they use. Whether that would be one prescription charge or not is unknown. And I don’t want to get into an argument about it. The sight in my left eye is OK optometry-wise but is like looking through a dirty windscreen. Steroids for me now would be useless on my eye as in it won’t repair the damaged nerve necessarily.

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You can get a FREE prescription ie You can apply for a medical exemption certificate if you have one of the following medical conditions:

  • a continuing physical disability which means you cannot go out without the help of another

person.

Many folk with MS get this, eventually. Ask your GP they will fill a form for you to send off.

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Hello. Sorry to hear of your diagnosis, but dont panic. I was diagnosed at 17. I am now 27. I did an English degree then my PGCE at Oxford and am in my fifth year of teaching. I took medicine straight away as I wanted to give myself the best chance. Started on copaxone and now take Gilenya- a simple tablet each night. I would personally recommend medication but wprth having a chat to your nurse. Xxxx

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I haven’t seen a neorolagist yet they are trying to hurry it up . So I guess I can’t start treatment until thend. Feel so unwell with it . One minute I think I feel ok next minute I feel awful. I really hate this . I need to know more about what’s going on amd get some help. I will know more next week onhow long I will have to wait. I just hope my symptoms don’t get worse it’s already been really hear thw past 6 weeks especially the past two weeks x that’s really good that you are continuing doing what you want to :slight_smile: . I have two young girls amd it’s very tricky luckerly my husband has been able to help x

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Did your mri show Demilanation? X

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Yesss

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[quote=“PJday”]

You can get a FREE prescription ie You can apply for a medical exemption certificate if you have one of the following medical conditions:

  • a continuing physical disability which means you cannot go out without the help of another

person.

Many folk with MS get this, eventually. Ask your GP they will fill a form for you to send off.

[/quote] I spoke to my doctor about this and MS doesn’t appear as a lifelong disease/condition on the form but, interestingly, myasthenia gravis does.

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Tonight I’m not feeling great pressure in my head is bad my breathing feela faster generally feel really rubbish amd I can’t control it :frowning: . Can’t phone anyone as they won’t do anything just twll me to wait for referral. Just have to sit here and put up with it whatever is going on :frowning: . Hope you don’t mind me saying all this just scares me when i feel like this. X

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I really know how you feel I’m the same at the moment :frowning: x

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It’s not named as MS on the form - but anyone who has:

  • "a continuing physical disability which means you cannot go out without the help of another

person."

Anyone with a long-term condition, like MS or MND etc., or has a car accident etc.,.

“which means you cannot go out without the help of another person.”

I need someone to drive me and push me around in my wheelchair - so I can tick this box.

But if you can still go out on your own, then you won’t tick this box - yet.