Hi. I’ve been diagnosed with MS this afternoon. I have had two episodes of retrobulbar optic neuritis and numbess and I also have quite bad tremors. After MRI scans I have been given a definite diagnosis and, as I live in Guernsey, I have to wait a while to go to Southampton before I can speak to someone about treatment. I don’t really know very much about MS and would like some advice about what happens next. I’d be really grateful if I could get some advice about the process from here onwards and generally what to expect. Thanks x
Hello and welcome to the site
To be honest, I can’t tell you for sure what happens next because it rather depends on who you see and what type of MS you have. You’ve said “episodes” of ON & numbness so I’m assuming you have relapsing remitting MS (RRMS)? If you do, then the next possible thing to happen is a conversation with your neurologist about disease modifying drugs (DMDs). These are meds that help to reduce the number and severity of relapses that people with RRMS get. There are eligibility criteria for these (set by NICE), but local Primary Care Trusts (PCTs) often add their own unofficial interpretations to these, so whether or not people get them varies around the country. Unfortunately, at the moment, there are no DMDs for progressive MS.
If you want to learn more about MS, then I recommend the booklets that the MS Society and the MS Trust do. You can download these for free from their websites. Avoid trawling the internet too much - there are a lot of crackpots out there! When you’re reading, please remember something very very important: MS is massively variable - we are all different. So you will NOT get every symptom they talk about! And while some of the things you get might be bad, others might be very mild. It’s only a very small proportion of MSers end up in wheelchairs 24/7 and the vast majority of us live really quite normal lives - it’s still perfectly possible to live a long, happy and fulfilled life. Yes, MS sucks, but it is NOT the end of the world!
Some practical things: you need to tell the DVLA about your diagnosis (there’s a form you can download) and check your mortgage policy or any other cover you have to see if you have critical health cover - MS is a payable illness, but most policies have a time limit on claiming.
Also make sure you get the contact details for an MS nurse. I don’t know what the set up is where you are, but MS nurses are basically the conduit to the neuro. They help with meds advice and advice in general and if they don’t know the answer they ask the neuro.
I recommend that you get your vitamin D3 levels checked (blood test via GP). Many MSers are deficient and a lot of neuros are now recommending that we take a hefty supplement (e.g. 5,000iu a day) even if we aren’t deficient as there is evidence that it can help MS.
General advice is to try and keep exercising and fit, stretching is a good idea too to keep flexible, take vitamin D3, eat healthily, don’t smoke and be kind to yourself - it’s not your fault you got MS. Most importantly, get on with having a good life.
You might struggle to get your head around it all and no wonder! You will get through it, but sometimes we need professional help so don’t be reluctant to speak to your GP or to a counsellor. I saw a counsellor when I was first diagnosed and it helped me immensely.
I think that’s more than enough for now! I hope this helps, but if I’ve missed something please just ask.
Thanks Karen, that’s really helpful.
Do the DMD’s help with the fatigue? I have 2 young girls (5 and 1) and a full time job and I can’t afford to reduce my hours. I feel as if I have no strength left. Any helpfult tips about coping/lessening this would be great.
Thanks, Sam x
There’s some new evidence that Copaxone helps with some people’s fatigue, but I can’t say I noticed when I was on it. Generally, no, DMDs don’t help with fatigue.
Fatigue is a problem that an awful lot of us get though. Unfortunately they still don’t know exactly what causes it and it appears that motor fatigue and cognitive fatigue might even have different things underlying them. All very complicated and therefore difficult to treat. There is a med that is approved for MS fatigue; it’s called amantadine. Another med that a lot of us use is modafinil. It’s not officially approved for MS, but many neuros and GPs do prescribe it. Neither drug works for everyone, but they are worth a try. I didn’t have any joy with amantadine, but modafinil has been a lifesaver. I did hear the other week that my neuro has been told that he can no longer prescribe it to new patients so you may not be allowed it. Worth asking though. If you can get modafinil, you might be best to try that first because your PCT might clamp down any day. Amantadine will still be available if it doesn’t work, but the other way round may not be true.
Both the MSS and the MS Trust do booklets on fatigue. It’s mostly common sense, but you might get some good ideas from them. Things like prioritising your tasks (e.g. housework is not a priority, feeding the kids is), resting / having a break BEFORE you get tired, not overdoing things, etc. Learning to say no is an important one that some people really struggle with - you have to learn not to take on too much. Asking for help too - that can be hard for some people, but it helps to see it as a positive step against your MS so you can reserve your energy for more important things rather than “giving in”.
Things do get easier with practice.
You may not know that MS is covered by the Equality Act (Disability Discrimination Act in Scotland). This means that your employers are legally obliged to make “reasonable adjustments” to allow you to stay in work. That could be anything from getting you a new chair to changing your hours. So have a think about what might make your work easier for you. Access to Work and the CAB will be able to tell you more.
Fatigue really sucks. It’s always been my worst symptom. I hope you can make some changes to make yours more bearable.