My beautiful, brave, charming, funny 16 year old daughter has just been diagnosed with M.S. She only started having problems about 6 months ago, nothing that we were too worried about. Her back felt a bit numb but after mentioning it she never mentioned it again, then in Feb her leg went numb, she went to doc who diagnosed a trapped nerve. She hardly mentioned it other than it was not getting better, then in May her hand and arm went numb. Again, back to doc who think this time was a bit concerned as her right eye was blurred as well. He arranged an urgent app with a neurologist, I googled her symptoms and came up with M.S. Before her urgent app came through she took very unwell, dizzy, very sick and could not stand. I phoned the doc who said to bring her down, tried to get her up but she could not move without throwing up so phoned the doc who came to the house, she gave her anti sickness jab and spoke to me about what I thought it could be. I said M.S. and she agreed that the symptoms were more likely to be M.S. or brain tumour. She phoned an ambulance and she was rushed in. She was in hospital for over 2 weeks and was violently throwing up for 6 days. They tried to give her an M.R.I. but as she was so sick and threw up in the machine they had to wait till they got that under control. They gave her an M.R.I. finally and then a lumbar puncture and confirmed the diagnosis within a couple of days. She was given steroids and after 15 days was sent home. She has been given an M.S. nurse, who she saw and he explained everything to us including starting Rebif, she has saw a neurologist who showed her the M.R.I. scan which has lesions in her brain and spinal cord. She was slowly getting feeling back but still very dizzy and had bad balance. Now she has numbness in her left leg and lower back. Phoned her M.S. nurse who has made an appointment for the relapse clinic on Monday. This would make 4 relapses in 7 months. Is this normal? I am so very very worried about her.
Hi Rachelsmum,
Firstly i am sorry to hear of you daughters diagnosis, must be very hard for you both given her age, but i’m sure with a loving mum like you it will make it easier on her. It’s good she had such a quick diagnosis and is starting treatment so quickly, it should help reduce the number of relapses she is having. There is no ‘normal’ with MS, it is such an individual condition, two people are unlikley to ever have the same problems. If she has improved well between relapses though, i would say this is a positive sign. It might be worth asking the nurse at the relapse clinic about neuro-physio, if her balance is still poor, they should be able to give her some excercises to help.
I am fairly new to MS myself, so hopefully somebody more knowledgeable than me will be along soon with some more practical advice. I hope your daughter (Rachel?) continues to improve and wish you both the best for the future, Laura x
Hello! Laura has given you good advise I am so sorry to hear of your daughters diagnosis at such a young age. You both must be devastated. I was diagnosed 8yrs ago and was put onto rebif pretty quickly. Your daughters ms seems to be active at the moment but that does not mean it will continue to be. There is evidence to show the sooner you start the medication (dmd’s) it should help to reduce the relapses in frequency and severity. The dizziness/balance issues may get better as she comes out of relapse and if not the ms nurse can refer her for neuro-physiotherapy. My ms was simular at the beginning and i had the phisio and went on rebif and my ms is now under control. I have a teenage daughter and i can’t imagine what you are going through. Take care and if there is anything anyone can help you with don’t be afraid to ask on here. Teresa.x
M.S. nurse phoned back this afternoon and after talking to neurologist she thinks starting rebif next week is the way forward. We have booked a holiday for August and because of the side effects they thought it better to wait till she came back from holiday before starting it but due to the relapse they think starting it next week is better and hopefully any side effects she may suffer can be managed before we go, I would cancel holiday if they are too much for her. She has an appointment with the physiotherapist next week to start exercises to help her balance and core muscles. We are all devastated and don’t know what to do or how to react. I am trying to play it down so she does not panic but inside I am screaming. My husband, Rachael’s step dad has been a tower of strength but I can see he is suffering too but like me he is trying to downplay so as not to show me how upset he is by it. My oldest daughter just keeps crying every time she looks at Rachael, trying to get her to not show how upset she is is hard as she is an emotional type of person. The uncertaintity of it is the worst I think. If someone could just say this is how it is and this is how it will progress it may be easier to deal with. I keep watching her and everytime she winces or sneezes I am all over her making sure she is fine and googling to see if that is another symptom. I know I need to relax as I feel as if I am losing it a little and I need to to be fine to take care of her. Thanks for replies, I really appreciate being able to get stuff off my chest. Linda x
Hi, you’ve had some great advice from Laura and Teresa.
I just want to add that there’s a huge amount of research going on into MS at the moment… worldwide… and new treatments are coming along all the time… but the best news is that they are talking about a cure for the first time ever. Your daughter is very young but that does mean that she will be able to have the cure… they are saying 15 years but it could be sooner.
Of course for a 16 year old 15 years is a very long time… but it may be of some comfort to you to know she is not looking at a lifetime of MS.
Take care… this is a great place for you and your daughter for support, advice and friendship. There are quite a few groups for young people with MS around the country… so google and see what you can find… and there’s a great website for young people… wish I could remember the name… but again, googling should find it.
All the very best to you and your daughter,
Pat x
Thanks for replies. M.S. nurse spoke to neurologist and phoned back, they are going to start her on rebif next week rather than wait till we come back from holiday in the middle of August. They wanted to wait so that she could manage the side effects at home but because it looks like her M.S. is active they don’t want to wait. Her M.R.I. scan showed a lesion that could be going either way, the neurologist said he was not sure if it was one becoming active or an old one healing, it would appear it was one becoming active. She also starts with physio the week after next so hopefully that will help with her balance. I can’t believe how well she is taking all this, she has her wee moments of tears but it is only moments then she stops and gets on with things. She was upset about leaving college as she had a 5 year plan and at the end of it she was going to open a salon and run her own business, now that has to be changed as she does not have the dexterity to do the beauty course she started last year. But she is now talking about going back to college next year to train as a Nursery Teacher and says if her hand goes wonky again she will be able to get a scribe at college to do the writing for her. She is being so positive. Wish I was, I can’t wait some nights till she and my husband go to bed and just sit crying and worrying. She is braver than me. Will check out website for her. x
Hi, Rachelsmum - I don’t have anything to add to the replies above - but I wanted to say that my heart goes out to you. My lovely daughter was ill at age 14 with her first MS attack, but not diagnosed until last year, when she was 18. It is a monstrous thing for our children to get that diagnosis. It is a cliche, but true, to say that we would far rather have the illness than let our children have it. She feels that her life has been blighted… I try to show her that isn’t the case, that she will have a long and happy life, but she doesn’t really believe me. She’s off to uni in September, and can’t wait for that - but she feels she must pack everything into her life as fast as she can, for fear of what might happen in the future. So, I know how tough it is to support a child, while worrying ourselves about what the future holds for them. I am generally very positive, but this isn’t easy for any of us to handle… good luck to you and your lovely daughter… I hope things go well for you both. Best wishes, V
Hi, Rachelsmum - I don’t have anything to add to the replies above - but I wanted to say that my heart goes out to you. My lovely daughter was ill at age 14 with her first MS attack, but not diagnosed until last year, when she was 18. It is a monstrous thing for our children to get that diagnosis. It is a cliche, but true, to say that we would far rather have the illness than let our children have it. She feels that her life has been blighted… I try to show her that isn’t the case, that she will have a long and happy life, but she doesn’t really believe me. She’s off to uni in September, and can’t wait for that - but she feels she must pack everything into her life as fast as she can, for fear of what might happen in the future. So, I know how tough it is to support a child, while worrying ourselves about what the future holds for them. I am generally very positive, but this isn’t easy for any of us to handle… good luck to you and your lovely daughter… I hope things go well for you both. Best wishes, V
Oops, sorry for repeat post!
Hi everyone, thanks for replies. M.S. nurse phoned and had spoken to neurologist at the rehab centre Rachael is now attending and he thinks she is having a relapse. She has an appointment tomorrow and they plan to start her on rebif this week instead of waiting till we come back from our holiday in the middle of August. Should I cancel as she is having a relapse, will the heat of Italy in August make things worse, she is really looking forward to it. The reason they wanted to wait was so she could manage the side effects at home and not in a foreign country. I just don’t know what to think. Her left leg, lower left back and now her left hand have started getting numb. She is very tired. She is handling this better than me and my husband I think. She got very upset when she had to leave college as she missed the last month and her assessments due to being in hospital and she needs manual dexterity to be able to carry out the beauty therapies she was training for. She had a 5 year plan, college for 3 years, 2 years renting a chair in a local salon and then starting her own business. This was one of the few times she actually cried and asked why her. The rest of the time she has been very brave and positive. She just seems to be taking things in her stride, I just hope she is not bottling things up. I can’t wait till her and my husband go to bed at night so I can have a proper cry. I need to stop googling stuff. Every now and then I forget she has it and then it slams into me again, my beautiful daughter really has a horrible illness. Thanks again for taking time to reply. Linda x
Hi everyone, thanks for replies. M.S. nurse phoned and had spoken to neurologist at the rehab centre Rachael is now attending and he thinks she is having a relapse. She has an appointment tomorrow and they plan to start her on rebif this week instead of waiting till we come back from our holiday in the middle of August. Should I cancel as she is having a relapse, will the heat of Italy in August make things worse, she is really looking forward to it. The reason they wanted to wait was so she could manage the side effects at home and not in a foreign country. I just don’t know what to think. Her left leg, lower left back and now her left hand have started getting numb. She is very tired. She is handling this better than me and my husband I think. She got very upset when she had to leave college as she missed the last month and her assessments due to being in hospital and she needs manual dexterity to be able to carry out the beauty therapies she was training for. She had a 5 year plan, college for 3 years, 2 years renting a chair in a local salon and then starting her own business. This was one of the few times she actually cried and asked why her. The rest of the time she has been very brave and positive. She just seems to be taking things in her stride, I just hope she is not bottling things up. I can’t wait till her and my husband go to bed at night so I can have a proper cry. I need to stop googling stuff. Every now and then I forget she has it and then it slams into me again, my beautiful daughter really has a horrible illness. Thanks again for taking time to reply. Linda x
Hi everyone, sorry for duplicated posts, pressed the button twice quick and it posted it twice. On re reading my posts I see I have duplicated some info. Again sorry about that. My head is all over the place. I find it hard to concentrate and organise my thoughts. I am just so worried about the outcome and what the future holds. Again, please forgive the duplication of events and worries. Linda x
Hi Linda,I imagine your head is all over the place at the moment…don’t worry about duplicating posts! Do you have holiday insurance that might pay out if you don’t go to Italy? The heat might be exhausting for her (my daughter gets wiped out by it) Maybe you could go later in the year instead (cooler, and no crowds!) and deal with the possible side effects of the medications now. Also, I wonder if you should go to a counsellor for some help to deal with your own grief and shock? This is a trauma for you, and it would be good for you to be able to talk it through with a professional. Your gp would be able to put you on a waiting list (tho the wait might be quite long). Good luck. V
Thankfully only paid for flights, transfers and parking. Booked hotel through Booked.com so you don’t pay hotel until you arrive and it’s free to cancel it. My daughter starts her rebif on Wednesday and also be getting steroids on Wednesday, Thursday and Friday. She is having a sensory relapse which apparently is not something to be worrying about . I am worried. Will speak to her M.S. nurse on Wednesday regarding the holiday although when we last saw him he was all for it but that was before the relapse and her starting the rebif so maybe he will advise not going too. I am trying to weigh up what is best for her and balancing her needing something to look forward to. I have been to counselling in the past when my first husband died and it was not for me. My poor daughter has had such a lot to deal with in only 16 years. Her dad dying when she was 5, been bullied so bad at school that they allowed her to leave at 15 and wrote a letter to allow her to attend college which is why she was nearly a year through her first college year at such a tender age, the bullying was so bad we moved 15 miles away to get away from them so she was in a strange place and knew no one. She was enjoying college and finally had friends and was no longer scared. Then this happens. I don’t know how she is still standing and not buckling under the pressure. She is so brave. Braver than me. Thanks for replying V. x
Hi Linda, my 18 year old son has not yet been diagnosed but has had optic neuritis, fatigue, and double vision, swallowing difficulties and his hands and feet go burning hot and painful. We saw his neurologist after the optic neuritis and MRI showed one lesion but since then has had other symptoms so has had further tests VEP last week and more opthalmology appts and we are waiting for neurologist appt again and we have prepared ourselves for a diagnosis of MS at some point and this has all been going on since Easter. Like you I am absolutely devastated that my gorgeous boy who at the start of his life might have something that will challenge his future, he has been off college since it happened as he suffered terrible headaches and fatigue and by the time he started feeling better college finished. I try not to think too hard about what the future holds as I think I will just curl up and cry so I am trying to treat him like I treat his brother and sister and encourage him to live his life like a normal teenager whilst he is feeling fairly ok. We have a holiday to Tenerife booked in a few weeks time. Have been worrying about it myself and have emailed the hotel to ask for a cooler room and they have a 24 hour medical centre in the hotel so we are just going to hopefully ‘go for it’. I really hope your daughter starts to feel better soon, it really sounds as though she is going through an awful lot at the moment, I know my son hasn’t been affected as much as her, but I feel your pain and worry about the future so please take heart that you are not alone in being mum to a young person in this situation. Take care, Michelle xxx
Thanks Michelle, if I could I would take this from her and suffer all the pain in the world to save her. M.S. nurse says to go ahead and go on holiday, he advises that I contact them and arrange to have a fridge in room to keep her meds in, and that while there she listens to her body and when she needs to rest she rests and goes in the pool if she feels too warm. While she was receiving treatment the nurse left her notes lying. No way was I not reading them. She has 4 lesions on her brain and something about Dawson’s fingers perpindicular to corpus callosum and a significant lesion in her spinal cord, it also says due to the aggressive onset they advised she started rebif sooner rather than later. All very scarey, even though I don’t understand most of the words (anyone help there?) or understand what it means for her. She got her training on self injecting and starting that tomorrow and has her last steroid infusion tomorrow too. She is having more and more breakdowns this week, think it is finally sinking in. I love her so much my heart hurts for her. Good luck with your son and I hope you get some news soon and even if it is M.S. (it may not be, fingers crossed) I think it must be hell to be in limbo and to not know for sure. I had googled my daughters symptoms early May and guessed that M.S. was something to be worried about but kept telling myself that no way as she was too young. Then she became so sick and was diagnosed at end of May so we did not really have a lot of time to prepare or actually worry. I really feel for you and hope you get all the help you need. Linda x
Hi Linda, It sounds like all this has been a whirlwind for you with information coming from everywhere. I’m so you have been told to go on holiday even though it may seem like a scary thought, it will be good for you both to have something ‘nice’ in all this chaos and the rest and relaxation may make your daughter feel a bit better and more positive. You sound like a lovely mum and your daughter is lucky to have you. Stay strong and try and keep positive and if you need to talk you can private message me at any time. Take care, Michelle x
It’s unbearable when it’s our children who suffer. You’re right - I’d do anything to take this away from my daughter, including having it myself. My daughter is off to uni in September and I am worried sick about how she’ll cope (and can’t even let myself think about how I’ll deal with missing her!) Linda, Your poor girl has gone through so much in her young life - it is just not fair, is it??? I have to say, a holiday in Italy is going to be the perfect thing for cheering her up - and of course she can just jump in the pool when she gets too hot! I hadn’t thought of that as the perfect way for cooling down. And she can have a siesta! It will be a lovely chance for you all to get away and hopefully not think about MS too much. Good luck!! And Shelley, I’m so sorry to hear about your son…what a nightmare for you. I hope you get things fixed asap…there does come a time when diagnosis (and possible treatment, and support) is actually a good thing… good luck. Apologies but I can’t put in paragraphs as my return key seems to ahve stopped working…
Hi,
So sorry to hear that your daughter is going through all this at such a tender age. No wonder you are so worried about her. It sounds as if you are getting the best medical attention possible.
You’ve already had some really good advice and support from others and I don’t have much to add as I’m way older than your daughter and I know it would break my heart if it was my son with MS and not me.
I just wanted to say that you must make sure that you take out travel insurance for your daughter that specifically covers her MS. Don’t just rely on the EHIC or the travel insurance that comes as part of a package as it often doesn’t cover pre-existing conditions. You may have to pay a bit extra for it but it’s worth it just for the extra peace of mind. It’s worth shopping around to get the best deal.
Have a great holiday. It will be good for you all to get away from everything and relax together as a family.
Tracey x