I need advice please. I was diagnosed 5 years ago and manage great most of the time. Just lately though things are starting to slide. Its only little things but they are wearing me out. I have pins & needles across my neck & shoulder blades most days. I get Uthoffs (sp?) a lot and the blurry eye drives me demented. I noticed yesterday that the skin on my right boob and my right shoulder blade is numb to the touch. It was numbness on my left side that led to my initial diagnosis. I’m not on treatment right now as I came off rebiff 2 years ago as I had no quality of life with the side effects. I really dont know what to do now - i detest steroids, cant really afford to take time off work, have 2 young kids and a husband that is more afraid of upsetting the status quo around the house than worried about me.
When they work, steroids shorten the duration of a relapse, but they don’t change the outcome. They also work best when they are taken early in the relapse. So, in my opinion (which I admit is biased - I hate steroids!), steroids are an option, not a necessity.
However, I really would urge you not to try and work through a relapse. That seems to me to be asking for it to get worse and last longer
Can you ask your neuro to put you on Copaxone? There are no flu side effects with it at all and it’s just as effective as Rebif.
Maybe you should phone your MS nurse and ask for some advice?
I hope things clear up soon, and that your other half gets his act together!
Karen x
Sorry you’re feeling like this, you sound really stressed.
I have two small children as well and I know how draining it is, ontop of a relapse. I’ve been having a replapse since June and you just dont’ get a break or rest do you!
You don’t have to take steroids if you don’t have to. I was offered them but declined, the dr said they probably wouldn’t help me and I decided to carry on without and try other things to deal with it.
I hope you start to improve soon. Give that husband of yours a kick up the bum!
xx
Tks for the replies
I have to work, we’re both on fairly low wages so they are much needed. To be honest though, I’m lucky that my job involves sitting at my desk all day answering the phone - i get more rest there than I do at home!
I left a message for the MS nurse, will prob be Monday before she gets back to me I suppose. I really hate the injections and copaxone frightens me as its into the muscle i think? surely that hurts a lot more!!
Hiya,
Have you thought about giving hyperbaric oxygen a go? I go once a week, and it has helped with a few different relapses - I hate taking the steroids and have sworn that I’ll not be taking them again - I find that the HBO works for me, there’s probably an MS Therapy Centre near you that offers the treatment.
L x
Hi lals02
thanks for getting back to me - i dont know a lot about HBOT, read a bit a while back. A friend of mine who was recently diagnosed with PPMS is starting it soon. I thought with RRMS and no spasticity or muscle problems it wasnt really geared towards me - maybe i’m wrong?
Hi Satgirl2
I know what you mean about the steroids, ive had IV and oral over the past 2 years. I personally would take them again if I needed them.
I agree with lals02, Im recently diagnosed in February this year and started HBOT in july. Had first 20 consecutive sessions and now go once a week. My energy levels are better and the pins and needles and odd sensations are much better. Its not a cure but find it does help me. Im on Copaxone but have been able to reduce my neuropathic pain medicine.Like you I have no spacticity but was getting muscle twitching, thankfully this has stopped. I get the feeling though that a lot of people put off going until they progress. I dont see the point of waiting until more damage is done as the whole point of going is to hopefully stop further damage. If you have a centre give it a try. It doesnt work for everyone but you will never know unless you try it. Hope things improve and you get to speak to your MS nurse. Best wishes Heather
The HBO is worth a go - any type of MS can be helped, the centre that I go to in Aberdeen has a variety of people with different stages/types of MS, also some people who don’t have MS, eg I was in the tank earlier this year with a lassie who had broken a leg in a motorbike accident, and it helped her recovery (I’ve also been in the tank with a couple of footballers from AFC with sporting injuries who were less than impressed when, not knowing who they were, I politely asked them what they did for a living). Basically how it works is that your bloodstream takes up more oxygen when you breathe it under pressure, which in turn helps your body with any healing that’s going on. When I first went I could hardly see because of optic neuritis, but after the first session I could read text messages on my mobile phone for about an hour, and it built up from there until I got my sight back. Apart from anything else, socially it’s valuable because you meet a lot of people who know what you are going through, and you can offer support to each other. If you google MS Therapy Centres, you’ll find your local one, give them a shout and they’ll explain things to you - it won’t do you any harm, and it’s worth a bash.
Luisa x
really don’t be worried about copaxone. its only a very small needle. when i first started on copaxone i thought pretty much the same but its nothing i expected. very easy too be honest
Completely agree with mickthetrick - Copaxone is a doddle to inject. It’s not into muscle either so don’t worry about that.
HBOT is certainly something you could try, but please do not get your hopes up too high. Some people feel that it helps with some of their symptoms but I know plenty of people who have had absolutely no effect from it at all and there is no scientific evidence that it makes a difference to MS.
If you don’t get anywhere with your neuro about getting onto another DMD, then you could always try LDN. It also doesn’t work for everyone, but some people find it helps with some of their symptoms and some people with progressive MS believe it has slowed their progression.
Karen x
Hi all,
Tks so much for all the good advice. The ms nurse rang me back to day and after speaking to my neuro i’m going to his clinic on Friday morning. She wasnt overly concerned about my new areas of numbness, it was more the blurred eye that she said was ON and would need to be checked. I know i’m lucky that I can speak to her on a Monday and see the consultant on the Friday so we’ll see what happens next.