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My daughter's situation - advice needed

Hi, I would really value any thoughts or suggestions here (actually, what I really want is a magic wand, or failing that one of those “and then I woke up and it was all a dream” moments!)

So - my 17 yr old daughter (perfect, funny, clever, loving, looking forward to a fabulous future, just like all lucky 17 yr olds) was ill 3 yrs ago with what was initially described as ADEM, even though we suspected it wasn’t that, as there were too many differences btwn that and MS. Last year she had a bout of ON, and she has had a number of signs and symptoms since the ADEM (including just yesterday a shooting tingling pain in her neck when she moved her hand.) She also has overwhelming fatigue. Her paediatric neurologist has been seeing her every 6 months or so, and recently asked for another MRI scan. This has shown that there are new areas of demyelination.

She has never been on any medication.

My daughter ALSO has symptoms that seems to suggest some arthritic condition (she has very achy joints and sometimes very severe back pain (right at the point of the lumbar puncture she had 3 yrs ago - the pain she felt then has never gone away). Her joint pain is on-going and causes her distress on a daily basis. She has been referred to an arthritis consultant for this.

I suppose my questions are - is arthritis or joint pain something to expect with MS? Or is there something else going on altogether? And more pressingly, should I ask for my daughter to see a specialist MS consultant? I’m thinking of Dr Wassmer in Birmingham (who previously saw my daughter and told us she hadn’t had ADEM but a CIS).

If I’m honest, I’m desperatelay reluctant for my daughter to be given a diagnoss, as she would find this so traumatic (hence my reluctance to ask for a referral). BUT - does she need medication, or some more pro-active treatment (our consultant is pretty laid-back about all this)?

Help! I am floundering through this and can’t see clearly what I should be doing. Any suggestions gratefully received!

Hi anon,

It was frightening enough for me when I was in limbo a few years back so it must be ten times worse for someone so young.

I can understand your reluctance in your daughter receiving a formal diagnosis of any kind but ultimately it’s got to be preferable to the not really knowing, particlualy in terms of all the worry. A diagnosis will also go a long way to seeing your daughter getting the right treatment & medication.

When you see the rheumy guy I would definitely mention all her symptoms to him - jot them down - and see what he says. If he feels it may be something of a more neurological nature then he may be able to refer her to a neurologist himself. If not get onto your GP. It might also be worth contacting her current neurologist?

Mention to him about her lack of medications - you don’t normally need a diagnosis to receive help for some of the symptoms.

Good luck. Will you keep us posted as to how she gets on?

Debbie xx

Some people with MS have joint pain and muscular pain is quite common, but it’s also possible to have more than one condition, so it’s best to see experts in both to properly determine what’s causing the problem.

I really think your daughter should see the MS specialist. The fact that he previously said she had CIS and she later had ON and has more lesions very strongly suggests that she now has MS. If the diagnosis didn’t make any difference to treatment and prognosis, then I suppose there wouldn’t be any need to seek one, but the fact is that there ARE treatment options that could help your daughter, and she can only get these if she sees the right consultant. By seeing the MS specialist, she will also get access to an MS nurse and to people who are experts in helping MSers - very much better than battling along without the right support. She will also be able to get the right meds, e.g. for pain and fatigue.

And the right treatment, meds and support mean staying as well as possible for as long as possible.

I appreciate that your daughter might find the diagnosis traumatic, but as many people on here can testify, not having a diagnosis can be very much worse. Not only do we know what to tell people when we have a diagnosis, we know what we’re fighting - and that in itself is worth it.

Karen x

Hi,

I know you’re right. It’s just facing up to this condition will be so painful - my daughter has always been very scared by thoughts of dying, and when she was in hospital with ADEM a doctor told her that she might have MS and might die of it, and then sent us home. My daughter was sobbing hysterically all the way home. The massive impact a proper diagnosis will have just fills me with horror.

On the other hand, I see exactly what you’re saying, and I do agree with you - I’ve just not been brave enough to make that call. I will do it, though.

Thank you both for your replies - much appreciated.
V

OMG! That doctor should be SHOT!

MS is NOT a terminal illness! Yes, there is an unfortunate minority who die because of their MS, but the norm is for people with MS to live only slightly fewer years than people without MS. It is really common to find MSers in their 70s, 80s and 90s even! My local MSS branch is full of them!!!

There is an extreme version called Marburg’s variant which is often fatal, but this is a very quick acting variant which your daughter DEFINITELY DOES NOT HAVE!

Please please please believe me - for the vast majority of people, MS is NOT the end of the world. We live really quite normal lives doing what other people do: getting married, having kids, working, enjoying hobbies, going on holidays, etc. Yes, we have to face some unpleasant challenges along the way, but we can still have long, happy and fulfilled lives.

Some doctors! Geez!!! No wonder you’re scared!

Karen x

Thank you for that!!! When the time comes for my daughter to learn about this, I am going to print out your post and give it to her. We will need all that positive attitude and information - thank you so much!

V

Hello there, It must be a very difficult time for you both and all your family and I would just like to wish you and your daughter all the best of outcomes. Take care…xx Maria.

I don’t know what it is with some Dr’s. My old GP had leukaemia and he said we both know our diseases will eventually kill us. Thankfully I knew the facts but did wonder how a person who didn’t would react.

They are now finding out more and more people are having a milder, more benign MS. Optic neuritis is seen as one of the better symptoms to have.

You will find many people still live fairly normal productive lives. There are Dr’s,nurses,teachers, university students, people in every walks of life.

If your daughter does have MS there are now treatment options that can help cut the attacks. Seeing a neurologist could mean the possibilty of getting a diagnosis and possible treatment sooner.

My daughter has health problems and was being investigated for late onset cystic fibrosis at 21. We wanted the correct diagnosis so we knew what we were dealing with and we could educate ourselves to the best way of living with it.

Make that call and if she does have MS there is a young peoples forum on here. Your daughter will find others in the same situation and she’ll become less fearful.

Let us know what happens.

Jacqui

x

Hi Vicky

I’m absolutely disgusted by what that so-called doctor told your daughter!!! There are very strong words for people like him, which I shall refrain from using…but that doesn’t stop me from thinking them…

Like Karen has already explained MS is NOT a terminal illness. I completely understand why you’re so scared at the prospect of seeing yet more docs but it is important that your daughter sees one and gets a proper diagnosis.

It’s not going to be easy persuading your daughter to see a specialist - and who could blame her after the experience she’s had with that…doctor…but if I had a chance to go back and do things again, would I still have gone for the referral, seen the neuro for tests etc and then receive an eventual diagnosis? Yes. I would. I shan’t tell any porkies and say it’s been a breeze since receiving my dx but I definitely wouldn’t want to be in limbo again. Now I’m on medications & treatment and yeah okay, life has changed but I still hold down a responsible grown up job, I still have a laugh and enjoy my life - it’s just that it’s different from what it was.

Maybe when the time is right your daughter could have a little look at this wonderful website herself - see some of the posts and read things written by people that do actually have MS. I’ve made some great friends here and I’m sure she will too. The young peoples forum may be a good place for her to start as there are others in the same age group who will therefore have the same worries & questions.

Whether your daughter has ms or not it may give her a better understanding & help to alleviate some of her fears.

Debbie xx

Thanks for the encouragement - and yes, I agree that the doctor who said that to her was a total - well, you can guess what I think. (I did complain to the consultant, but no one was v interested…)

Anyway, I have now phoned Dr Wassmer in Birmingham and am waiting for a reply, so I have taken the advice from pple on this list! Thank you!

My reluctance is that my d just thinks she has some irritating problems - she isn’t aware that I think she has MS! So if/when she finds out, it will be a bolt from the blue…