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Helloooo

Hi Everybody, I have just got home after being diagnosed with mild MS. I’m afraid I have to say, I didn’t really know anything about MS until I joined an oscillopsia support group, I posted what my ENT MRI letter said and a lady commented “white matter? Isn’t that MS?” So I googled symptoms and the list I saw in front of me was as if I’d written my symptoms down. I have been told that by the weekend I will have the steroids to take down the brain inflammation and that it’s not going to be pleasant. He said I would be put on some other tablets but will tell me about them after the steroids. So, I wanted to say hi Tracie xxx

hi tracie

welcome to the club and i’m sorry that you have to join it.

i have only ever had steroids once and they were high dose intravenous ones which made me quite manic.

now the other tablets could be one of the oral DMDs.

look after yourself, eat well, sleep well, rest often and smile a lot.

carole x

Hello Tracie

Sorry you’ve had to join our club, but welcome anyway. This is a very good introduction to MS for people new to their diagnosis: https://www.mstrust.org.uk/understanding-ms/newly-diagnosed-multiple-sclerosis

I have to say, I don’t believe there’s such a thing as a diagnosis of ‘mild MS’. You could only say it’s mild after you’ve had it for maybe 20 years (or following death) and then have been only mildly affected.

Although, having said that, the main objective is to keep the symptoms mild. This is the reason for disease modifying drugs (DMDs). They are designed to reduce the number and severity of relapses. So when you see your MS nurse, or neurologist to discuss them, it’s a good idea to be familiar with them. Have a look at: https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid You probably won’t get the choice of every DMD, it will depend on the severity (so you won’t get the drugs that are licensed for highly active MS), and on the drugs available in your prescribing centre. If they try to say ‘it’s only mild, you don’t need a DMD’, I’d disagree.

With regard to the steroids, they are supposed to bring the symptoms of a relapse to an end quicker. They aren’t a cure, just to speed up remission. There are a few things to know about taking high dose steroids:

  • They make your mouth taste horrible, it’s a sort of metallic taste. For this reason, swallow them with milk, actimel, yogurt or something else that coats your mouth. You take them all at once in the morning.
  • Through the day, try eating mints to disguise the taste. (Chocolate works quite well too!) By the time you eat dinner, your mouth should be OK.
  • They can upset your stomach, so it’s a good idea to take something like Omeprazole to prevent this. Failing that (ie if you don’t get a prescription for it) try liquid Gaviscon.
  • They tend to make you a bit antsy, or agitated. Your sleeping can be affected. Don’t be too concerned about teeth grinding or feeling a bit edgy. But if they make you want to pick up a machete, see a doctor ASAP. (This is a very exaggerated suggestion of a side effect!)
  • Try to avoid people with colds and viruses. You aren’t more at risk of viruses, they might just be a bit worse.
  • Once you’ve finished the course, your mouth, edginess, any stomach trouble, sleeping problems should be resolved pretty fast, but you will perhaps feel washed out and maybe even a bit sort of sore and bruised.
  • Don’t expect the effect to be instant. Steroids can take effect over several weeks.

Having said all these horrible things, they can do a very good job. So while some people say they’ve tried them once, never again, I’ve had them quite a few times and while their effect isn’t guaranteed, they can work wonders. So I’d persevere. Unless you suffer very very badly (like Carole) in which case, it’s fine to try to just ‘tough out’ a relapse. Hopefully you won’t have too many of those.

Best of luck. And come back here when you have questions, worries, just want to chat with people who understand.

Sue

Thank you Carole for replying, starting the steroids tomorrow xx

Hi Sue, Thank you so much for your detailed reoly, I appreciate it. I must admit, when he said 'mild I cried for the people who have it worse than mild as I feel completely awful. I was diagnosed with menieres disease 6 years ago and it turns out it never was menieres disease but MS. I’ve gone from working full time to part time as I was getting a chest infection and I just could not get back to a stage where I could go about my day easily. Even at part time work, I became known as "Oh, she’s off sick again as I was working for a few weeks then off sick for a week or two then back to work and then back off sick. So even working 4 hours per day,I’d come home and get in bed till the next day and then spending the weekend resting getting ready for work on monday. Since December, I’ve had a terrible bladder and kidney infection and I need a biopsy and kidney stone removal later this month and well, so far, I’ve been off work 9 weeks!!! So I overcame my claustrophobia and had the MRI which has led me to now. The gp was going to refer me to Chronic fatigue clinic but the neurologist said not to bother because it’s the MS. I have 3 and a half lesions I don’t really know anything other than him saying “I can look you in the eye and say you won’t be worse than you are now and you could end up feeling better” At least I think that’s what he says, my memory is shocking and my driving is even worse, so i dont anymore, I can’t even be a passenger. Thank you again, I will look through your link now