I am completely new at this and just wondered if someone could point me in the right direction. I have only just been diagnosed with ms but it all properly started at the end of December 2020. I am now on my fourth relapse which reading from google is a lot is this correct or is 4 what other people can experience. I am awaiting my hospital letter and an appointment with ms nurses to start treatment but my latest relapse is affecting my right arm and it is so so painful and I’m not sure what to do or how to control the pain. I have 3 children and my youngest has only just turned 2 so it’s becoming a real struggle as when I do use my right arm it is just unbearable. Thank you x
Welcome to the forum. Sorry you’ve had to find yourself here. You’ve gone through relapses and diagnosis right at the worst possible time (in the last 15 years say - since disease modifying drugs became more readily available and effective). So some might think 10 months is quick during Covid! Not that it feel like that to you I’m sure.
Yes, 4 relapses in a relatively short time seems a lot, but ultimately probably isn’t that unusual. We all share a diagnosis (those of us who are diagnosed) yet our experience of MS really differs.
Although you’re waiting for your MS nurse appointment, you might be able to get some drugs to help with symptoms from your GP.
First of all, have a look at Pain | MS Trust There are some drugs towards the end that might help with your pain. Even just in the short term. I’m thinking about a drug your GP would be happy prescribing, such as Amitriptyline, or even Gabapentin.
These types of drugs are not disease modifying drugs which is what your MS nurse is going to be keen on discussing with you. DMDs are drugs whose purpose is to reduce the number and severity of relapses. Something that I’m sure you are keen on doing!!
With DMDs in mind, have a look at: MS Decisions aid | MS Trust You won’t get complete choice of all the drugs, but concentrate on those described as ‘More’ and ‘Highly’ Effective. Since you’ve begun with frequent relapses, you need (I assume) to reduce the number of attacks. So getting a good, effective drug is essential (IMO). Having a look at the available drugs gives you a head start.
I hope you can get the arm pain sorted. It’s hard with small children I’m sure (no experience, just admiration!)
Is it possible that this all just one relapse or even two? Are you having definite periods in between issues when everything’s more or less fine? Mine lasted for about 3 months in the beginning, and after nearly 45 years my last one stuck around for 18 months. I’m not complaining, though, because I generally have 4 years in between them. MS is just so different for each of us.
For your arm, have you tried standard old-fashioned things like heating pads or hot water bottles, pressure wraps, aspirin, hot/cold ointment? When my legs pain me too much to sleep, it often takes a combination of several things. And of course the pain is still there when I wake up.
Actually NM, I thought about less relapses, stretched out to appear like 4 as well. But forgot to write it!! Brain Fogitis!
Thank you so much for your reply. Unfortunately yes I am sure about the past 3, this most recent one started the second week in November and I had been absolutely fine since the end of September.
I have tried a combination of things for my arm but nothing seems to help apart from you suggested pressure wraps and I haven’t heard of them so I’m going to look into that now and give that a go.
Thank you for your advice I really appreciate it and I really hope that things are okay with you x
Thank you so much for your reply.
I have spoken to my GP about helping with the pain but they have said they don’t want to prescribe me anything unless approved by the consultant and after trying to get in touch with him he’s told me to wait for the letter he’s sent which I’m waiting for but it’s not much of a painkiller lol.
Thank you for your links I will start looking into that so I can get an idea. I’ve tried not to google anything so everything is so unknown to me so I really appreciate your help.
I hope your okay
Hi and welcome. Can i please give you some advice, make the most of everyday, i didnt, and time went and i cant make memories woth my wife now the time has gone. Live for today