Hi, I’m new on here and was diagnosed with RRMS last month.
I was looking for a little advice. Coming to terms with living with this disease has been difficult, some days I cope and others I don’t, mainly because I can always feel it- you can’t just forget it and have a nice day… I know it sounds selfish as there’s worse going on in the world so struggle to talk too much about it with my friends and family. Constantly being upbeat is tiring!!
I am mid referral and when i saw my Neurologist my symptoms were more subsiding. It unfortunately lasted 6 days
I have not fully lost feeling in my arm/hand and have had to tape 3 of fingers together as i keep getting them caught on things- I’ve never experienced anything like this and i’m worried i’m going to break something.
I was wondering at what point you go to hospital? Its not just my hand and arm, it’s spread into my legs and all through my back. This is my 3rd attack in less than 6 months.
Does the medication take the symptoms away or does it prevent attacks happening? I have been offered the pills or the injections at the moment although require some more blood work before it is decided i think.
This is a crazy disease!! Last year i was planning my wedding- sweating the small things like what shoes and hair appointments and now my aim is to walk down the isle. So scary. If anyone could offer any advice, i would be most grateful.
Sorry you’re having such a tough time.
The first thing I would suggest is, that now is not the time to not the time to be putting on a brave face! You need the support of family and friends and you won’t get that unless you let them know how your feeling. It has no relevance to how your feeling and the support you need whether other people are in a worse position than you or not. By being upset and frightened you not taking anything from those who are worse off than you, so stop feeling guilty and concentrate on yourself.
Secondly, contact your GP (I’m assuming that I as you’ve only just been diagnosed you won’t have an MS nurse yet) and tell them what is going on. If you can’t get hold of your own GP, go to the out of hours doctor. If i were in your position I think I, personally, would go to A&E ( if I felt I could cope with the wait!) You shouldn’t have to be coping with this on your own, they have the training to know what’s what. I have never had a big relapse so I’m not entirely sure what happens, but I know that steroids are sometimes offered to speed up recovery from a relapse. There are lots people on here who know far more about big relapse than I do and I’m sure some off them will reply.
Thirdly, try to remember things will get better! Now that you have been diagnosed will you get more support and treatment. Of course, this is an extremely difficult and painful time for you but remember you don’t have to be strong. Ask for help, from family and friends, and on here.
Welcome to the club! That’s a great reply from Teddie, I agree. There may be people in the world with worse going on, but there’s never been anything worse going on in your world. Of course, seeing others worse off can help us to be thankful for what we’ve got, and that’s a worthwhile practise to have. But, it’s OK to feel rubbish & down. You’ve got a lot to feel rubbish about after all! Looking on the positive side of things can be very important. And I know there’s an expectation that we should only ever be upbeat & completely in control of our emotions - to keep calm & carry on at all times. However, I don’t think suppressing our emotions for long is a good thing to do. We think that we should be able to cope on our own, to never need any support from other people, or that feeling ‘negative’ emotions is a sign of weakness. That’s not true at all though - I think that admitting our true feelings & reaching out to others is a sign of strength, not weakness.
I would definitely get in touch with your hospital. As you’ll not be able to get in touch with the neurology department until Tuesday, it may be worth going to A&E, or at least a walk-in centre. I had a similar experience to you taping up your fingers. One time my arm went really numb & weak, so I slept with a sling on because I was scared I might damage it during the night : ) Getting some steroids should help speed up your recovery though. And as for the medications you’ve been offered, presumably they’re disease modifying drugs like Rebif or Gilenya. These drugs are meant to slow down your relapse rate, rather than taking symptoms away (though you may find certain things do improve). There’s a few different ones available, and we all respond differently to them. One may really help a person, while another person may find it does nothing to help. However, if you happen to find that you don’t get on with one, it’s perfectly OK to swap to another one.
I’d also ask to be referred to a phsyio who specialises in neurological conditions. They’ll be able to help you get the best out of the strength in your legs, and improve your walking & standing.
And finally, come on here as much as you need to. You’ll have all sorts of things going round your head - questions about symptoms, questions about what treatments & support is available, worries about the future, not to mention all kinds of feelings. Worrying & stress won’t help, so ask for help. You need to be kind to yourself.
Some great words of wisdom from Dan and Teddie. Worse things may be going on in the world but it doesn’t make what you are going through any less worrying. A diagnosis of MS is not the end of the world but it takes time to adjust and realise this and it is important to give yourself this time. Some say getting a long term diagnosis often means you go through similar stages of grief. Denial, anger, depression, acceptance etc. There will be ups and downs but life can still be good.
Relapses effect everyone differently. I like to think of it like having a faulty tv box (brain) with all the gadgets attached like DVD player, playstation etc being your arms and legs. They are all attached via plastic coated wires to the main brain unit, the tv box. Hope I haven’t lost you already. Anyway, if there is damage to the plastic coating (myelin) it exposes the wires (nerves) beneath. Now these connections could keep working, could become tempremental or stop working altogether. Usually these breakdown in connection to the tv (your brain) can be repaired completely so we are left with no symptoms after a relapse and sometimes these connections can stay tempremental. This is when we are left with permanent symptoms. Some say that the fatigue suffered by many people with MS is caused by your brain trying to re route around the damaged areas to make other connections although I think there are other areas of thought about what causes fatigue.
So to help with all this there are three sorts of medication some that have already been mentioned:
Steroids - these are sometimes given to speed up recovery from a relapse
Symptoms - there are different drug options to help with left over symptoms that can (not always) occur after a relapse, helping with pain relief etc.
DMDs - DIsease modifying drugs. These help to reduce the number and severity of future attacks.
i do hope you can talk with your family about your concerns. Bottling up emotions and trying to be brave doesn’t always help. Emotions have a way of escaping when you least expect it or want it. People will understand your need to talk through this change in your life. Sometimes a diagnosis can change peoples life in a positive way, they suddenly realise how precious life is and start doing amazing things that before were dreams, that were put on hold for another day. You may suddenly find the need to live life to the full and make the most of every opportunity that comes your way. I hopes so