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Son has MS

Hi

My 21 year old son was diagnosed with RRMS in November last year following over two and a half years of tests. His first bout of optic neuritis came 2 months after his 18th birthday so it’s been a case of waiting and then trying to get an appointment to see the neurologist whenever something flared up - have to say it has been a hard slog and I have had to chase lost referrals and fight for an appointment and found we had no support at all to the fact that my son doesn’t really acknowledge the fact he has this condition unless he has a relapse.

I feel very isolated because he does not talk to anyone about it, he is at university and none of his flatmates know, none of his friends know - it’s only the disability service and his tutors who are aware of his condition. At home, only his immediate family know too as he does not want people to feel sorry for him or treat him any different - my husband doesn’t like to talk about it either, so i just have to get on with it and sort of pretend it’s not happening - but I can’t as I’m his mum and he is due to start Tecfidera very soon and I don’t think he realises how this will effect him.

I see most of the people on the carers forums have parents or spouses who have MS but there doesn’t seem to be many parents who post - I am fine but I really could do with someone to talk to who understands from a parents point of view.

I have to say, since he moved to university in September and we transferred his care just before Christmas it is amazing the support he has from the Neurology team there and how quick they get things done!

Anyway, have had my little rant - feeling better now, would love to hear from anyone who would like to chat :slight_smile:

Shelley 101,

I can not help from the parental point of view which I understand must be very tough for you. However I do remember being young (ish) and whilst not denying my condition, I really just wanted to be considered “normal” (whatever that is) and only acknowledge or discuss symptoms as or if they occurred. This is a double edged strategy because some friends or colleagues will be shocked if or when there is a problem. As a bloke / guy we like to compartmentalise so unless there is a specific problem I could leave my MS in a box (or on the back burner) and get on with being “normal”

I am only saying that this was my way of coping so feel free to ignore this notion, but it might be relevant.

Good luck to you and all your family. If I were you I would seek out other people in your position, who might be able to share your concerns (like we are doing here) which should help.

All the best

mick

1 Like

Hi Mick

Thanks for the reply, it’s good having the perspective of a male who has been his position.

This is exactly what he is doing, only dealing with it if there is a problem. He is very good and will go to all his appointments but once they are over he just reverts to being a 21 year old student and forgets he has MS. It is a bit worrying as he is supposed to take Vitamin D drops but forgets all the time, so don’t know how is going to cope with taking Tecfidera every day and I really don’t think he has looked into side effects etc.

I am the first person he rings if there is a problem, but when he is ok he doesn’t want to talk about it so wonder whether I should just leave him be or try to get him to talk?

Anyway, thanks again for the reply.

Michelle

Michelle,

The fact that he comes to you first if there is a problem should tell you something, however if he does not want to talk about it I would suggest you don’t push it. As an adult, not talking about it smacks of burying ones head, but as a youngster it is more like concentrating on the important stuff. As a mother and a lady who cares this must be quite difficult. In my opinion someone with MS requires a support team, you are clearly number 1 in the family category, I would suggest that you try to build a network for him of professionals and friends so that you can talk with them and he can get support when / if needed. I would start with your GP on the basis that you need the help to stay healthy and happy by knowing a bit about the condition and the possible sources of support. (In my opinion) You do not need to be either secretive or bang on about it, but you might feel slightly less afraid knowing that you can speak with people.

Good luck

Mick

2 Likes

Hi, my daughter is 23 but no formal diagnosis. She has currently got optic neurosis but her Gp or optician will not refer for MRI.

She is currently living in blissful ignorance that this will just go away and I am the complete opposite. Without trying to scare her want to push for further tests.

Can i ask what other, if any symptoms your Son had? I am sad to hear a Mother struggling and that it took a long time to be diagnosed.

Being a parent is overwhelming sometimes. I am off work now due to depression and will visit my Gp tomorrow. I feel if I’m in this state then I cannot help my daughter.

X

hi michelle

your plight as a worried mum struck a chord with me.

i have ms, it just is and i don’t expect my family to constantly ask how i am.

however my eldest son (28 yrs) had a psychosis on christmas eve and was rushed to the psychiatric ward.

so although i’m in constant pain, i’m too busy worrying about my boy.

we are lucky to have people who we love.

carole x

1 Like

Hi Seaside Mum

Optic Neuritis was my son’s first episode, a few months later he developed diplopia and that was it for another 18 months. He then had another optic neuritis and 6 months later he had problems with his right leg. As well as that he gets the odd case of tingling in his hand and fatigue.

When he had his first episode of ON we went straight to A&E and they referred him to the opthalmologist who from there referred him to neurology. We then had to wait a few years for the MS diagnosis and he was diagnosed with CIS after the first round of tests.

It may just be a CIS for her and maybe if she doesn’t want to pursue it any further at present, let her just get on with her life and if anything else crops up then ask for a referral to neurology, I know that’s easier said then done but go with what she wants for now. I was going to just let it be after the first episode but then he got the diplopia and I realised things weren’t right but it is awful being in limbo and I understand how you feel.

It has been really hard, I just want him to be well I find I am fine for months then I have this big overwhelming sadness and spend the night crying then I get up the next day and I am ok again for a while. I think the hardest thing is not really having anyone to talk to but I am ok, I don’t feel depressed I just have to keep everything in perspective and live for the present rather than thinking of the future and like Mike said, I think I need to just try and get some professional support.

I hope you are ok, if ever you need to chat then you can always PM me.

Michelle x

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Thanks Mick

I think you are right. He has the medical support down there and I have made sure he has the support he needs at uni, so I should just let him get on with it and make sure I have the knowledge and the contacts available if he needs support in the future.

Michelle

1 Like

Thanks Mick

I think you are right. He has the medical support down there and I have made sure he has the support he needs at uni, so I should just let him get on with it and make sure I have the knowledge and the contacts available if he needs support in the future.

Michelle

2 Likes

Hi Carole

I always say I wish it could have been me but that’s not how it goes, so all I can do is try and be the best support I can. He knows this and I know he is grateful for everything I do as we have been through this long journey together. I think at the beginning I kept asking him how he was but now I know he will tell me when something is not wrong, it’s a case of learning how to let go a bit.

I’m sorry to hear about your son, that must have been a scary time for you all, I hope he is recovering now and has the support he needs but as a mum once something happens we are always on our guard.

Michelle

2 Likes

Hi,

Very sad today just found out my son has MS, we are all in a state of shock. He was on the way to being a professional goal keeper, after having a loss of strength on his right side and an odd sensation nearest description is harlequin syndrome in April, 1Ct Scan 2 MRI’s we were told today , Been given steroids for 5 days and to return for a lumbar puncture in 2 weeks to evaluate what type.

My sister 54 this year is in advanced stages of MS so my son has seen first hand what happens he is scared. Trying the best to not let our worries show but devasted.

Any help

Hi Shelley . Can really understand what you are going through as I have a daughter with RRMS. It is very tough as we feel our job is to make things better which regrettably we can’t always do.

i know that we can only be there for them and support them but it is very tough and the guilt always seems to creep in.

Well meaning people always tell me look after yourself, take a break etc but it is not always that straight forward.

Do PM me if you want a chat.

1 Like

Hello all,

I have MS, I’m 30 now but was DX’d at 16 and I just want to reassure you all, in particular Mrs M, that MS isn’t guaranteed to be dreadful.

When I was DX’d I was told that it tends to have a better prognosis the younger a person’s diagnosed. I have probably had it since I was 14, now 30 and the only ways my MS affects me are the fact I wear glasses (ON in one eye but I do have most of the sight back in that eye) and the fact I’m not much good at climbing ladders (balacn issues), but stairs are fine.

So basically, I look and feel totally ‘normal’, or at least not like I’ve got a neurological condition!

I have a few friends that were diagnosed at 18 and 21 who are in a similar position to me. So what the neuro said about getting diagnosed young looks to be true!

I can’t imagine what it must feel like to be a parent of someone with MS, but as someone who was DX’d young, it doesn’t always have a huge physical impact, plus drugs to fight it are improving all the time.

Much love and all the best to you and your children, X

4 Likes

Hello. I realize this is an old thread but I’d really like to hear more from the parents of people with MS. My son was diagnosed at 17 last year. I’m scared for the future for him. He had trouble all through his teen years with depression and anxiety and physical issues that we now know were due to the MS. He fell behind in school so is still working on finishing up. He wants to go to university but I’m afraid he may not make it because of the fatigue and the slow pace with which he’s working on finishing high school. He’s so smart and funny and kind - I want the best for him. I want to continue to encourage his independence but since the diagnosis I find myself hovering more than I would if he didn’t have MS. I would love to hear from a parent about how things are going now that a couple of years have passed. Thank you.

hi smpin encourage him to follow his dreams. at uni he will have a pastoral tutor and this is the person you can liaise with. he is very young and apart from ms is probably a strong healthy young man. i am a parent but fortunately my sons don’t have ms. they have other medical issues though. the eldest one spent time in the psych ward and has just been diagnosed with type 1 diabetes. the youngest has ehler danlos syndrome. i wish i could have their illnesses for them. except i’d be straight for the knackers yard. just be there to pick him up when it gets rough. my eldest gets carer’s allowance to care for me, although he doesn’t do much at all. i’m thinking of claiming it for him. he has picked me up when i’ve fallen in the house. i pick him up when his mental state falls. cook him high protein, low carbs meals. all my best wishes to you and your son

Hi. I am the mother of my 38 year old daughter with RRMS. she was diagnosed 10 years ago. My only advice I want to share is fight tooth and nail for your child to get as much help you can. My daughter was pushed from one consultant to another because she ‘didn’t fit the criteria’ for their specific drug until they finally realised she was in freefall with the disease. I should have stood my ground and fought harder for her to get onto a disease modifying drug sooner. She falls within the 2% of MSers with severe disabilities now and life is pretty tough. That said she continues to smile be beautiful and think herself happy and lucky.

Thank you everyone. Thankfully we had a good visit with the new neurologist in the adult hospital. MRI in July showed no new lesions on brain or spine. some shakiness in hands and numbness in foot but not so bad. Huge boost psychologically and emotionally for my son - for all of us. For now the medication, Copaxone, is working. He parties a little too much with his friends but seems determined to make school work for him this year and is taking control of doctor’s appointments and his course selection/meetings with principal. Fingers crossed. Would prefer if he didn’t party at all with his friends but given he’s a teenager, I don’t seem to have any control. In the end it is his life and I will support and advocate for him as much as I can. Shazzer1, I’m so sorry to hear that your daughter wasn’t diagnosed in the early stages. That seems to be a common thing. In one way I guess we were lucky that my son’s first 2 attacks were so obvious and he was diagnosed. We were also lucky because he was at a residential school for kids with mental health issues (lots of anxiety and depression about not being able to get out of bed and falling behind in school and sports). One of the nurses there had worked at the Hospital for Sick Kids in our city (Toronto,ON) for 10 years and recognized that what we thought was a flu was actually something serious and neurological. I am forever grateful. I am glad Shazzer1 that your daughter continues to smile and that she has you. I can’t believe how tough it is to be a parent of a child with MS. I understand. Just keep loving her and taking care of yourself. xo