laura_thomson 02/04/17
Last reply 1 year ago
17year old son diagnosed, lots of q's?

Hi everyone,

I’m new to this forum and also new to MS and was hoping that someone might be able to answer a few questions for me and my family.

A bit of background first:
My son was diagnosed with MS on the 15th of March 2017 following numerous tests which involved scans, X-rays, blood tests and a lumbar puncture after he developed sudden double vision in Jan last year and an abnormality was spotted on an MRI scan. It took 10mths more to see a neurologist and here we here. Unfortunately it has not been a smooth ride as the hospital have let us down many times by misplacing his notes etc (long story!) we found out he had MS by a letter that was meant for the GP but got sent to our home by mistake. In realising their mistake they squeezed us in with a different neurologist who was very nice but didn’t feel like we had chance to ask many questions. We were told that a nurse would be contacting us to start my son on Rebif and we are still waiting to here back. In the meantime I have contacted the original Neurologist’s secretary and she is arranging for the Dr to refer us to a specialist.

So the questions;

1. How long do people normally wait for their first contact with the MS nurse?

2. We have a young family and my daughters have been asking questions. They wanted to know if my son is classed as disabled. Sorry for the bluntness of this question, I don’t mean to offend but 9yr olds are quite relentless and matter of fact about things and I think she’s getting frustrated with my “I don’t know” answers

3. Who do we contact if he gets new symptoms?

My mind has gone blank now and this post is quite long anyway but thank you in advance for taking the time to read. Ps we are in Surrey, England.

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joolzmac
1 year ago

Welcome and sorry to hear of your sons diagnosis x I believe it is a long wait as I’ve been told.
I had to be admitted in January 17 to get iv steroids after I had all the tests ct, MRI lumbar puncture. I was told I had ms on 30 January.
Wasn’t getting any better back on 3 days steroids.
I still haven’t been given Meds yet.
You should have an ms nurse to contact and ask loads questions they are so helpful.
I am still very new to all this as well, hope I’ve answered some questions ok. Big hugs Julie x


cameron
1 year ago

Hello – welcome to the site! First off, delays such as yours may be commonplace but that doesn’t make them right. You would be in a much better place to be able to cope with the diagnosis if you had had access to an MS nurse immediately. So – you are going to have to do a lot of finding out on your own. I say that because IMO it’s not acceptable to be ‘told’ your son will start on Rebif. Choice of MS drug is not a straightforward matter! You need to know that there are three levels of drug available and that there is debate about the pros and cons of each. When I was diagnosed in 2003, the drugs to choose from were Copaxone, Rebif, Avonex and Betaseron. Their efficacy in reducing relapses averaged 30%. In 2003, they were still very new but even to choose between these four wasn’t straightforward. All have side effects and it took several conversations with MS nurses plus an information video before I came to a decision. No-one ‘told’ me – I had to weigh everything up and take responsibility for that decision. Since 2003, many more drugs have become available and the original four, the so-called ‘CRAB’ drugs, are now considered a first-line treatment and of limited efficacy. The debate among neurologists is whether to start gently on a CRAB, then move up when the MS worsens, or whether to hit it hard with a second or even third line drug immediately. The weight of evidence is building very much in favour of hitting it hard, because accumulated nerve damage cannot be reversed. One of the drugs is proving so successful that it is tentatively being regarded as a cure. You need to gen up on all this so that when you meet the neuro you know what you’re talking about. One of the best sources is the Barts MS Research Blog. It’s a daily blog by probably the most up to date and forward thinking research teams in the UK. You can search for every kind of information and if you follow it daily, you’ll come to grips with the way treatment is heading and what you should be demanding of your son’s MS team. I don’t wish to be pessimistic, but it is certainly the case that some neuro teams are not up to speed. My first one wasn’t and I had to change hospitals. I sincerely hope this is not the case with your son, but it rather sounds as though they have their heads in the sand. xx


stumbler
1 year ago

Hi @laura_thomson and welcome.

As you’ve already witnessed, the NHS aren’t always as efficient as they should be. So, we do need to become our own advocates, to understand what treatments are available, argue to get what we want and to keep our fingers on the pulse to make sure things happen when they should.

As far as your MS Nurse is concerned, you should be able to find their contact details using the following website:-

https://www.mstrust.org.uk/understanding-ms/living-ms/map-ms-services

Do give them a polite courtesy call to see when things are going to happen.

Is your son disabled? Well, he has a progressive and disabling condition, but I would say no, he is not disabled. MS is now a manageable condition, with a range of treatment options now available. Having MS makes you as disabled as the symptoms make you. In the majority of cases, you can experience long periods of remission, which can allow normality to return to life.

The MS Nurse should become your first point of contact for all things MS and also things that may be MS. MS Nurses are specialist Nurses that only deal with MS patients so are very knowledgeable about the condition. If necessary, they can liaise with your Consultant and your GP on your behalf.

I’m sure you will find time for more questions. MS is a whole new ballgame and we need to educate ourselves in this subject. Then we can enter into informed discussions with the medical professionals, rather than be talked at.

The MS Trust provides a range of publications, which are a good source of information:-

https://support.mstrust.org.uk/shop

The “Newly Diagnosed” section is a good place to start. But, also read up on the Disease Modifying Treatments (DMTs) now available. There’s a growing school of thought that we should treat MS with the most aggressive treatments, to minimise the risk of acquiring any disabling symptoms. However, others are still adopting a more conservative approach. I would place Rebif under this “more conservative” approach.

Please feel free to pose any questions that spring to mind.


laura_thomson
1 year ago

Thank you so much for your replies, it really does mean a lot as my family is feeling very much in our own at the moment.

I will definitely look into the reading material mentioned. We are off on hols next week so am hoping to return to some communication from the nurse etc, if not I will be contacting them.

Will definitely read up on DMD’s too, it’s all such a lot to take in but by being a bit more informed ourselves we can get the most out of any appointments.

Best of luck with all your journeys through this whatever they may be xxx


lucyh
1 year ago

Hi @laura_thomson

This might not be what you want to hear right now, i.e. may be too far into the future to think about, but my friend definitely had MS in secondary school and was diagnosed in her 20s. She is in her late 40s now, mother of two children etc. i.e. when you get meds sorted (I’m not on any, so there’s no telling) life will go on for your son (simply awful as this period has been).

He is covered under the Equality Act, so take a look at that….depends on whether he wants to be regarded as having a disability or not (i.e. he could get a govt. job under some quota system, as MS is recognised as a disability). Perhaps his siblings could be told he has a dis-ease, as opposed to a disease (my friend explained it to me like that…a lack of ‘ease’ rather than disease).

In my case, I contact the MS Nurse if I feel I have a problem. My GP, wonderful as she is, will refer any MS stuff onto the MS Nurse (I was told about MS nurses by a local charity…the hospital failed to mention their existence!).

Take care and post your queries on Shift MS when you want to…I have found people are willing to offer advice from-the-heart if you know what I mean…most of us have been-there-done-that-got-the-tee-shirt! XX


thecuriosity
1 year ago

As a note, you are supposed to be provided with a carbon copy of correspondence your Neurologist sends to your GP for your own records, so while it’s not ideal that you weren’t told in person, I’m not surprised you received a letter from the neurologist to your GP as they are supposed to keep you in the loop as to what they advise. What they should do is give you advice not hard and fast rules.

I was quite annoying at first but that has helped me get in good contact with my MS nurse and allowed me to make it clear that I didn’t want this disease to happen to me, and that I’d do my best to happen to it, and it seems to have worked quite well. Stumbler says you’ve got to be your own advocate and I agree with this. Do discuss your options and work out what’s best for your son, ideally with him so he can deal with this and feel like he’s in control of his treatment.

As for disabled, I feel like that’s something other people call you, and first and foremost he’s your son, and will always be your son. If this condition limits him in some ways maybe it will make him feel disabled but just remember it won’t change who he is and that he’s a part of your family.

just take this as it comes and remember that we get a lot of crap stuff happen but we don’t need to let it ruin the good things in our life.


chris3127
1 year ago

Hey Laura,
Sorry to here about the way you found out about your sons MS, it can’t have been easy but unfortunately I think the amount of time it takes to get a diagnosis for MS is quite commonly a long one. It is quite a lot to take on at first and 6 months or so into my journey I think I am just about to settle into things. The only advice I can give is to really take time with choosing medication. I chose my mine eventually on which one causes less harm to other body parts, kidneys, thyroid as before you know it there will be extra medication to counter act these issues. Another thing to consider is the side effects like gastro troubles or the inconvenience and pain associated with injection sites. Also there is a lot that diet and lifestyle can help with too, When I was first diagnosed I read Dr Jelinaks evidence based guide to recovery. It was really useful and answered a few questions for me< may be worth a read. The main thing is to re assure your son that it is not the end of the world. I am a 37 year old Firefighter that just takes two tablets a day and carry on doing my job. Everyones MS is different but all can be managed to some degree. I am local to you so if you would like to chat about things feel free to give me a shout.
Good luck and take care
Chris


lilbird
1 year ago

Hello @laura_thomson

Firstly big virtual hugs! I know my own diagnosis was difficult to get through but can’t imagine how I’d have dealt with it if it had been 1 of my kids so give yourself time to breathe & process (in between the regulation NHS faffing!)

My son was a little older than your girls when I was diagnosed but he was given a book, think it was “young person’s guide to ms” or similar title. It was an ms trust bk & we were given it by the MS nurse but I think you can order them, & other leaflets & info online.

Hope this or something similar out there might help you & your girls with that part of the process ☺

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