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Sorry to keep asking questions

Hi again, my darling daugher has been really struggling with pain and balance and headaches and fatigue, she was diagnosed with rrms in May/June this year. She has had 4 relapses in the last 6 months, the second to last one is the one that led to diagnosis as it was a cracker, vertigo, vomiting, headache, falling over and body pain and numbness. She had what the neuro called a sensory relapse a couple of weeks ago which she got intravenous steroids. Today she got up with her left fingers feeling numb and her left leg from her toes to half way up her thigh being numb. We are all new to this so still trying to get our heads around what happens, how long relapses last and what is involved. Is this or could this be another relapse? Is it the one from a couple of week ago still going? She started rebif after the last relapse so she has been doing that for 2 weeks now. I don’t know what to tell her when she is crying on my shoulder really fed up with feeling bad and asking me how long this will last, will she get better or is she going to just keep getting worse? I have no answers for her and as a mum it is my job to make things better, I don’t know what to do or how to comfort her because all I want to do is cry too and I can’t infront of her because if she sees me upset she will know that sh1t just got serious. I am the one in control, the one who does not get flustered and has answers and makes her life better and with this I can’t. I feel totally at sea and helpless. I want to scream. Please can someone tell me this gets better. Linda x

Linda You poor love I could cry for you. I can’t even begin to imagine how frustrating this must be for you as a mother, I was 26 when I was dx’d and I remember back then how hard it was for my parent’s to deal with it. No one can tell how long relapses will last & how frequent your daughter will have them, we just have to hope that they won’t last long. My longest relapse was 18 weeks when I was numb & tingling from the chest down. Does your daughter have an MS nurse? maybe the two of you could make an appt to go see her & talk about your fears etc. 2 weeks into Rebif isn’t a very long time, maybe with time the Rebif will start to eliviate the amount of relapses she’s having. Sending you (((((hugs))))) try stay strong Sue xx

Hi Linda, my heart cries for you. I’ve had ms for 17 years now, I can’t imagine what my Mum went through in those first days. I was living 120 miles away so she didnt see the early stuff so much. I guess it’s more real for her now as I use a wheelchair much of the time. Your daughter is going through a huge bag of stuff at the moment, just as you are. I went on Rebif after about a year past diagnosis. I was relapsing every month or so and had numerous stops in hospital for steroid treatment. Once the rebif had got into my system properly I had very few relapses. Every relapse in my case had a different length of time that it affected me, its one of those horid unpredictable elements of ms. Does your daughter have an ms nurse that you can talk to? This person may be able to suggest stratergies. I just needed to know my Mum loved me and that she’d be there when I needed her. Keep going, one step at a time will get you where you are both going. Much Love Sara xx

Hello Linda,

Its such a worrying time for you and your daughter and I’m glad to hear you are supporting her by staying strong in front of her (cry away from her so it doesn’t upset her further, as stress can keep a relapse going). Relapses are different for different people so no-one will be able to tell you how long it will take to get over or how often they will happen. But as your daughter has only just started on her DMD then it needs time to work so hopefully she should start to feel an improvement soon. If you are really stuggling you could contact your MS nurse to help. I was diagnosed young (around 18/19) and I’m near retirement age now, but I wanted you and your daughter to know that it is possible to have a fulfilling and eventful life even with MS. I’ve travelled and worked all over the world, have children, have a successful career and still work full time (I’ve had relapses over the years, but managed them). The positive for your daughter is that now research has come up with DMDs so the future is brighter for your daughter, so please know that there is hope of curing this disease in her lifetime. I hope her present symptoms pass quickly so she can move forward with her life and ease the worry for both of too.

With love and ((((((((BIG WARM HUGS))))))) Mary

Thank you, just having a sorry for myself moment. She is only 16 and her life has not even started yet and it all seems so hopeless sometimes. We are encouraging her and she does most of the time look forward to what she wants to do with her life and is waiting on the prospectus coming out for college next year to see what she wants to do with her life re: career. She was at college doing a beauty course but missed the last month due to being in hospital and ill after and now can’t do the intricate work involved as she has a tremor in her hands now. It just every now and then becomes overwhelming. Will take a deep breath and enter the fray once again, giving the impression that it is no big deal and we can manage the M.S. rather than the M.S. managing her. Thanks again guys, it’s good to have somewhere to go to offload. Linda x

Linda,

As I understand it, with RRMS relapses can last anything from a few hours to several months, depending on what part’s being affected and how.

I believe that typically, when an ‘attack’ subsides, a person will recover about 95% of the physical function they had beforehand. (Sadly, a relapse will usually take small casualties each time.)

There are a few drugs available now which at least aim to reduce the number and severity, or in some cases almost stop relapses completely. These are referred to as DMDs - Disease Modifying Drugs.

A DMD may be ideal in this case?

Regardless, I honestly think both you and your daughter need to sit down with an MS Nurse and bombard him/her with questions about the condition to understand it better …and the MS Society produce plenty of literature to explain many aspects of the condition. Probably won’t turn anyone into an ‘expert’, but at least you’ll understand MS a bit more!!

The MS Nurse should also be able to guide you both and recommend the best way to proceed.

Hopefully, someone else will be along shortly and be able to clarify my ramblings and expain things a bit better than me.

Best of luck to you and your daughter,

Dom

Sorry, took so long to type my comments that a few other replies appeared of mine

Dom

Hello love.

Oh all this is so cruel to be happening to such a young lady. She should be thinking about school, boys, having fun and planning a career…but life has dealt her this blow and as much as you want, you cant send it back!

as a devoted mum, and you obviously are, you want to take her pain and make everything better for her… that`s what all us mum s (and dads) do. You are doing the very best you can. And it is wonderful that you are helping all you can.

I wonder if you can sort out some treats for you and her to do together, or for her and her pals to do.

maybe something like a cinema trip, or a meal out. Nothing too strenuous. Just something to let her feel she is doing what her mates do.

I dont know what else to suggest…but I am sending both of you an extra long hug…

(((((((((((((((((((((((((((((((((((((((hug))))))))))))))))))))))))))))))))

oodles and oodles of love, Pollyxxxxx

Oh Linda, 16 is very young to deal with all the worries that you and her must have about the future.

I am sure that the Rebif will kick in soon.

Like Dom says, I think a nice long chat with an MS Nurse will be reassuring for you.

I had some good advice at the beginning, 8 years ago, my MS Nurse said not to let the MS manage you. Rachael is the boss and she must give it a kick up the bum from time to time to let it know that she is in charge. It is early days for you and Rachael though. It will take a little time for you both to get your heads round it. In th meaintime, we are all here for both of you and remember, we know how youn both feel cause we felt the same way.

Take care and big ((((((((hugs))))))))

Shazzie xxxx

Hi again Linda,

Clinically, relapses less than 30 days after the end of the last one are not recognized as a new one, but all part of the same thing. It’s not unusual for them to rumble on for quite some time, but unfortunately there is no answer to how long they last, because they may not even be the same twice, for the same person… Mine tend to be on the long side, with a very fast onset (sometimes literally overnight), followed by a much slower recovery (months).

However, I’m told the average is five or six weeks. That might not mean very much, because it’s entirely possible nobody has ever actually had an “average” relapse. If half of them are very long, and the other half very short, it could turn out the average is five or six weeks, without anyone necessarily ever having one exactly that length.

Please don’t beat yourself up for not being able to achieve the impossible of curing an incurable illness! No mum can do that. Your job is to be a good mum - which you obviously are - but not to do the impossible. You can’t make reality “go away”, but you can support her in that reality.

Oddly, numbness is something you can get used to after a while. I don’t mean it won’t get better, but if it’s there for more than a few days, you don’t stop knowing it’s numb, but it somehow doesn’t have such a prominent place in your consciousness. Just my experience, anyway. Still annoying, but not quite as much, once you’ve got over the contrast with how it “ought” to feel.

Tina

x

Just thought Linda, does Rachael go on the Young Peoples part of this site? It might help her to talk to younger people who are feeling like she does at the moment.

Shazzie xx

Good thinking Shazzie!

pollx

Thanks Poll

xx

hi again and again thanks for all replies. It really helps talking to people who are going through this too and know it is not the end of the world, just not the world we thought we would be dealing with. She is not ready to join any groups yet or talk too openly about M.S. That may come but for now she only talks to me and even then sometimes I have to wheedle out of her how things are. I don’t think she is ready to accept it yet although she seemed to accept it weeks ago but maybe that was just bravado or just sticking her head in sand. Think sometimes it just gets on top of her and she is fed up feeling ill all the time, she used to love lying in her bed and sleeping but now that she needs to do it she seems to be fighting it and is determined to not lie about in her bed most days. Will phone M.S. nurse tomorrow, he is really good so hope talking to him will maybe help as well. Thanks again guys, you are invaluable. Big hugs to all. Linda x

One more thing Linda. We have lots of fun on here too. There is a lot of laughter on this site. Although, I must admit the thought of a joining a group feels me with dread.

Hope you get on well tomorrow.

Take care.

Shazzie x

Hi Linda

Give your daughter some time to come to terms with the diagnosis in her own way. In a way she is grieving for the life she has lost and at this stage there is no normal way to cope with it. She will come through this stage but it must have been a huge shock for her (and of course for the rest of you and her family). If she still seems to be withdrawn after a few months then you could seek counselling through your MS nurse (who sounds excellent btw).

I’ve had MS for 4 years and in an odd way, the numbness becomes the new normal. Somehow your body accepts it and you do notice it less. It’s always there but it becomes comfortable, like an old friend almost. Your daughter may well recover most of the feeling eventually as relapses can take many months to get over.

I was told that Rebif takes a little while to build up in your system. I started on Rebif in August 2009 and then had a sensory relapse in Ocober 2009 but was told not to worry about it as it didn’t mean that Rebif wasn’t going to work for me. I then went right through until March this year before I had another relapse. I take that as proof that Rebif is working for me. Prior to starting Rebif I had had two severe relapses in three months and I believe another one which I didn’t report as I was so confused as to what was a new relapse and what was part of the old relapse. Not as many as your daughter but still a significant number and a huge difference after starting on the Rebif. I hope it works as well for your daughter.

Take care, sending <> to you and your daughter

Tracey x

Thanks Tracey, I take great comfort in the thought that Rebif may well work for her and halt or slow down these horrible relapses. Her M.S. nurse is fantastic, I emailed him this morning and 2 mins later got response, he thinks this is just a rumbling on of the last relapse but told me to contact him and make an app if I was still worried and he would take a look at her. I also told him my husband was struggling with her diagnosis and now my husband is going in tomorrow to see him and get all the info he needs and reassurance. Nothing seems too much trouble and he always seems available even though we live in the worlds capital of M.S. and being in the West of Scotland we have an even higher than “normal” rate of people with M.S. Thanks again. Linda x

Hi Everyone,

My son was diagnosed at the age of 7!!! i now have to decide what treatment he needs to go on. I have had feedback from my MS nurse but i have also read about bad side effects!!.

Are there any parents who have decided not to go for treatment for their child and if so the reasons why. Help!!! Thank you.

Hi Spursfan, I can’t imagine what you are going through having to face this with your 7 year old, still a baby really. You must be out of your mind with worry. I think you would be better starting a new thread with this question incase anyone can answer it and maybe not check out this question thinking it’s more answers to my question. I hope you find someone to help you with this. If you don’t mind me asking why would you consider not starting treatment, is it just the side effects that worry you? It’s going to be really hard for you as a 7 year old might not have the vocabulary to tell you how he is feeling or what is going on with his wee body or how the drugs should you decide to go down that route are affecting him. I hope you get some good advice from people on here and your M.S. nurse. Big hugs. Linda x

Hi, oh how wickedly awful for a young child to be diagnosed with MS or anything so horrible, bless him.

You may have already thought of this, but might it help to post your question on 2 of the other boards? ie young persons and carers.

luv Pollx