Hi all, I am 26 years old woman, married, with 1 year old baby girl and yesterday was diagnosed with RRMS. I have had two episodes since 2010, my symptoms have been (aside from major fatigue for many years) vertigo, tongue going numb, muscle stiffness and weakness, burning and freezing feels in all my limbs as though I have been sitting in an ice bath, patches of skin feeling raw, numbness and tingling in my hand (which is horrible), spasms in hand and leg, balance problems, optic neuritis and general pains (like a deep aching) and bladder problems. I write this list only for those who may not have been diagnosed yet to relate to possibly. I have had very bad experiences so far with GPs, Neurologists and their secretaries and therefore after yesterday’s very brief discussion with my new Neurologist am feeling unbelievably sad and frightened. My Neurologist said, very matter of factly, " worst case scenario you could be in a wheelchair in 4-5 years" - whilst this is worst case scenario, you can imagine how hearing this at 26 with a very very young child is devasting. He also told me as I also have Bi-polar that my only treatment option is Copaxone. He also told me something about how I have to make a decision by a certain time (I didn’t hear what time). I have one child but my dream was to have more. What do I do? Not have anymore children and start treatment? Never have treatment? Or delay treatment? Should I have treatment so I am better able to look after the child I have? I don’t understand what treatment does? Does it delay disabilities potentially? I’ve cried non stop since yesterday, I feel like a lot of my dreams are over in terms of having more children, let alone how scared I am about the disease itself in general. My friends keep telling me to see the positives? What positives? It’s nt a positive thing!! Feel alone
Hi Polly,
Firstly, you are not alone but I can understand you probably feel like it right now.
I was diagnosed with MS at 24, prior to having my family and I decided not to go on medication as I wanted a family. Your symptom list sounds similar to mine after I had my first child and I did go on to have my second. That was a very individual decision and you will need to weigh up all the positives, negatives and the amount of support you have as to weather you choose to have a second or just enjoy the beautiful baby you have already.
It sounds like your doctor was horrible and had no time, maybe you can get an appointment with another or see a M.S. nurse?
There are lots of questions you will want answering and you should take all the time you need to make a decision like this. Only you and your partner can decide on the family issues and only you know how your body is and whether another baby will be too hard on you.
Take care and when you need a cry, give that beautiful baby girl a cuddle and enjoy her.
Good luck
BFx
Hello, and welcome to the site 
Well that neuro clearly missed the course on good bedside manners! Jeez!
What DMDs (disease modifying drugs) do is reduce the number of relapses that people have by 30% on average. They also delay the onset of disability and, because they reduce the number of relapses, they also reduce the amount of disability that comes from them. DMDs have also been found to increase life expectancy and some of thes also slow progression (the gradual worsening of symptoms). The 30% figure is an average across everyone. Some people do very much better and some people find that they have no effect.
Copaxone is the most popular DMD in the UK. One of the main reasons that people choose it is because it doesn’t cause the flu-like side effects that the main alternatives do.
As far as that wheelchair comment goes, I recommend that you completely and utterly ignore it. MS is massively variable, but most of us do not end up in wheelchairs full-time. In fact, most of us manage to have really quite normal lives. Yes, MS sucks and it brings challenges that we’d much rather do without, but for the vast majority it is not the end of the world. Life can still be good!
The having more children question is a really difficult one and what I am about to say is possibly completely irresponsible as far as most neuros would be concerned, but there is evidence that becoming pregnant while on Copaxone does no harm to the baby so I would be awfully tempted, if I were you, to start on Copaxone but to be careful about stopping as soon as I was pregnant (and then start up again after having the baby). This would almost certainly be against medical advice though - I’m pretty sure that your neuro will not approve. Here is a good source of information about all aspects of MS. The link takes you to a page about DMTs (T for treatment; we tend to say DMDs on here) and pregnancy. http://multiple-sclerosis-research.blogspot.co.uk/2012/06/research-pregnancy-and-exposure-to-dmt.html
Karen x
Hi,
I am sorry you have a diagnosis of ms. You will have such mixed emotions at the moment.
There doesn’t need to be a choice here. Treatment or children? You can have both!
All you need to know is that you cannot take the DMD drugs whilst you are pregnant or breastfeeding. When you decide you are ready to try for another baby then you will need to come off the medication beforehand (i believe it is 6 weeks) to get the drug out of your system.
The DMD drugs are to reduce the frequency and severity of relapses.
You are more likely to suffer a relapse after birth so you can restart the dmd then.
So as i see it you can either try for another baby now and put off starting the dmd or you could start the dmd and then when ready for another child come off the dmd whilst pregnant.
Your neuro has not got a crystal ball - he should not have said wheelchair in 4-5 years.
As the diagnosis is so new there is no need to make any drastic decisions yet. Take it easy - the time around diagnosis is pretty grim. Be kind to yourself and give yourself time to come to terms with it all.
I have 2 kids and did not know i had ms when i was pregnant. I did however relapse after birth which lead to my diagnosis. I would advise getting on a dmd after birth to avoid the possibility of relapse.
Hope that helps. Best wishes
Teresa.x
So sorry for your dx - I understand why you feel sad and frightened. However, as Karen says MS is hugely variable and no one can say how well or otherwise they will be in 5 years. Be kind to yourself and take things a day at a time atm. You don’t need to decide things in a rush and just because you have MS does not mean you cannot have more children. Many MSers on here have done so! I just wanted to lend you my support and let you know that I’m thinking of you. Teresa xx
Hi, only you can decide. I wanted to reply earlier and suggest this but thought that I better not in case others thought me irresponsible. However, since Karen has just suggested the very thing that I would like to suggest, I’ll just say that I would do what Karen suggested. I would start the copaxone and try for a baby at the same time. Just be very aware of your dates and be ready to do a pregnancy test as soon as possible and stop the copaxone as soon as you have a positive pregnancy test. Yes this will be against medical advice but it might give you the est of both worlds at the moment. Just for the record I became pregnant twice while on betaferon. I stopped as soon as I realised. I now have an 11 year old and a 7 year old, there are not now or ever were any apparent problems from my betaferon use. Just in case you think I am totally stupid and irresponsible, I knew, both times, exactly what I was doing. The reason for my decision was that 12 or so years ago it was hard to get on betaferon and my hospital had a waiting list, I knew if I told them I was stopping to have a baby I would go to the end of te waiting list, so I felt I had very little choice. Best of luck whatever ou decide. Cheryl:-)
Sorry for the delay in response been feeling very low recently, thank you all so much for your replies. I had the JC Virus test for Tysabri which has come back negative at this point. I am due to have my first infusion in next month or so. I’m still frightened abut the PML risk and even more so that the treatment will not help me at all. I have watched many many videos of those on Tysabri and many blogs, comments about it bth positive and negative…how much does it suck that no one knows how it will effect each person. If I knew for certain I would not have a relapse in the next year or so, I would try for another baby now but if I knew I would have a bad relapse in that time I would risk the treatment. However no one can tell me either way so im finding it hard to make the decision. Any way, thanks again and I wish you all the best xxx
It might be worth noting here that the symptoms are ‘put on hold’ during pregnancy so you won’t get any worse at that time, the testing time will be after the new baby when you are likely to relapse. but the pregnancy itself need be nothing different to what you are experiencing already. good luck with your decission xxx
Hiya!you can defo have both! I was diagnosed at 22 and I’ve since had three children - only had one mild relapse whilst I was preg with my second, it only lasted a week. The nurses are really good at monitoring you once you’ve had the baby - apparently your chances of relapse go up slightly after birth as the lovely hormones that keep them at bay whilst preg start to disperse. I never experienced this though. I hope this helps Katie xx