How can I manage my MS relapses better?

[noorey]

Hi, I'm 16 and this is my first time writing on something like this so sorry if I'm not correct with all my technological terms its all still very new. I'll start at the beginning, in 2011 I went to hospital because I couldn't see out of my left eye and only realised due to winking at someone (not very observant obviously) and so when I went in they just couldn't figure out but after a lumber puncture and MRI scan they found that I had left optic neuritis. They gave me steroids for three weeks and my sight is fine now but they never found the cause behind it. Fast forward 5 years and at the beginning of the August I got chickenpox for the first time and because I'm not a child anymore it was so much more severe. So after the chickenpox had gone and I was finally on the mend, one beautiful friday morning at 4/5am I woke up with a pins and needles sensation in both legs and feet, I thought that it was normal because maybe I had slept on it but it persisted throughout the day and then in the evening travelled to my lower abdomen and back. I went to the doctors that day and the doctor just said they were non specific symptoms and that they’d pass and that they were due to stress. But thank God for my mum because later that night she took me to the hospital and long story short they couldn't figure out either so gave me an appointment as an outpatient 5 days later. So on the tuesday I went and was told it was a post infectious virus that may have travelled to my brain but they couldn't have been more wrong!!! So after 9 painful days in hospital, 2 MRI scans, lumber punch and endless amount of blood tests they told me that they were 99.99% sure that I had multiple sclerosis. I had a vague idea of what it was but really didn't know the extent that it could affect my life. I was discharged and on 500mg steroids for 5 days, I was finally rebuilding my strength and feeling better and THEN I woke up again with a very bruised, tender feeling all over my body. So went to the doctor and has now been prescribed Gabepentin 300mg daily for a month. Also part of this relapse my right hand spasms but when it happens it affects my face and leg. I’m finding that hard to manage due to the frequency and it happens when I'm mid sentence and will affect my speech slightly so makes me very self-conscious. I know everyones MS is different but it'd really help if I could just see how other people manage with it. Sorry for the ramble. Thank you for reading! x

[supermum_ms]

Hi and welcome to our little MS community,

Could you please brake up your posts into smaller text blocks in your future posts, people with MS commonly have visual and or cognitive issues that makes reading large text blocks difficult to read....ta :D

I'm a little confused sorry.....earlier this month (August 2016) you had chickenpox, but a few days after recovering from the chickenpox you woke up with bilateral paresthesia -pins and needles in both feet, which traveled up your body to include your lower abdomen and back.

Your family doctor thought the pins and needles was non-specific and probably anxiety related so mum took you to the ER, they initially couldn't work out what was wrong, but at the follow up appt 5 days later you were told it was post viral and admitted you to hospital(?)....9 days stay in hospital and lots of tests, then told they were pretty sure you had MS but just sent you home with 5 days of oral steroids??

I'm very sorry for what you've experienced (hugs) it's an unusual situation for sure, you've had an awful lot happening in only one month....i'm not totally sure if you have been officially diagnosed or if the reason your neurologist sent you home with only oral steroids is because the younger you are the more complicated MS is to diagnose, you might need additional diagnostic evidence before your neurologist will be confident it is MS.

At 16, if you are officially diagnosed with MS, you'll more likely fall with in the category of 'pediatric MS', the Optic Neuritis (which could of been the first MS attack) happened when you were 10-11yrs old and your still under 18. Children can  experience more frequent relapses but generally with relapses, if after a relapse you continue experiencing the symptoms or they worse or they return shortly after steroids within 30-45 days, it's typically not a new relapse but the same relapse...

Due to these completely new symptoms happening just after finishing the steroids, it's possibly the rebound effect of steroids and you are still experiencing the same relapse. Although i'm not really sure what could of been the cause the "very bruised, tender feeling all over my body", MS typically doesn't cause symptoms to be all over, it might be a reaction to the steroids but as you continued to develop new symptoms (unilateral hand spasm, face and leg, with additional speech issues) i would highly recommend you consider finding the best MS pediatric specialising neurologist to discuss disease modifying drugs and other treatment options!

Please try not to get overly anxious or self conscious, it actually can make things a lot harder to cope with, it often helps to talk to therapist about everything when newly diagnosed....please consider contacting your local MS society and ask for help in learning how to cope with everything, it honestly will help you through out your life to learn coping skills early, they should be able to get you in contact with some young MSers or a youth support group, worth making a call to see what the MS society can do for you!

Hope that helps, hugs.......JJ