Last reply 1 month ago
My 20 year old daughter has MS

We had the MS bombshell dropped on us last week. My 20 year old daughter went to what she thought was a routine check up at the hospital and was told the MRI scan that she’d had in August shows she had multiple white markings on her brain and that it was MS. The neurologist said that she couldn’t believe she didn’t exhibit more symptoms than she currently shows but said she couldn’t discuss her scan further as this wasn’t her area of expertise and that my daughter would need to see the MS specialist, appointment is in 8 weeks time.

We have been left totally in limbo and are worried out of our minds, thinking that it is really serious because of the neurologists comments. So much worry at present that we are now paying privately to get a consultation and to get some information about this disease.

My daughter had been having pins and needles and numbness in her legs and discomfort after walking for 10 minutes. After 6 months of being passed of with a trapped sciatic nerve she then had numbness in her left arm and little and ring finger. The symptoms have been continuous for the last 10 months and had the MRI 2 months ago. She had blood results which were normal and her reflexes are good. I’m in total denial about this disease as to look at her she looks fine, but obviously her brain is far from fine. I’m worried sick for her and don’t know what the future is going to hold. Will she get it faster and quicker because she is so young? We have so many questions and can’t believe we have been left so high and dry by the hospital. There is no history of this in our family. It is such a massive shock. Anybody else been diagnosed so young and so quickly from MRI scan?

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stumbler
1 month ago

Hi @msmothersucker and thank you for joining us on behalf of your daughter.

Your choice of username is understandable, but MS doesn’t have to be the condition that it used to be. It’s not a death sentence and it’s not an express one-way ticket to a wheelchair either.

The NHS do themselves no favours when they provide a diagnosis of a condition that they have no expertise in. Whilst the symptoms are indicative of MS, I believe the diagnosis is premature, as there are specific criteria that have to be satisfied before a diagnosis can be given (https://www.mstrust.org.uk/a-z/mcdonald-criteria). To give a diagnosis and then say that you need to see someone else for further details is, in my mind, unforgivable.

But, it is what it is and can’t now be undone. So, you need to calm all the family down, whilst you put this into some kind of context. Acquiring knowledge of MS will drive the process, but you have to ensure that you use creditable sources. Doctor Google can be a very bad source. Stick with the MS Trust and MS Society.

In fact, the MS Trust has a specific set of brochures for the newly diagnosed. You’ll find them here under the “Newly Diagnosed” button :-

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

The brochures can be read online or hard copies can be ordered, at no cost.

Whilst there is no cure for MS, there are now a range of treatments available to manage/slowdown the condition. Many more than were available 10 or 20 years ago.

Your daughter is young, so is well placed to respond well to these treatments. She has age on her side.

I hope this will calm your family. We’re here to help so please fire any questions our way. We know a fair bit, a case of necessity.

And good luck with the private appointment. Please let us know how that goes.


vickim654
1 month ago

I completely understand your worry, I got my diagnosis on Friday and right now my head is everywhere. I’m 26, was looking at starting to plan weddings, mortgages and a possible family. I joined this group and another on social media and reading everyone’s comments and stories I now feel semi relaxed, I know that it isn’t the end of the world. I just have to embrace it and learn to live with it. Plenty of others do so I’m up for the challenge (not that we have a choice)

I cannot comment on your daughter but thinking of you and her and just remember there are so much support, this group being one of them ❤️ I’m sure others will comment to help calm your nerves


mermaidia11
1 month ago

@msmothersucker (quality name btw best I’ve seen!)
Anyway,,,

Ah my love what a terrible, unforeseen shock for you all. Deep breaths !

At least you got a quick diagnosis…some wait years, but I’m sorry your neurologist didn’t have the temerity to refer you to an MS specialist, before the bombshell was dropped.

It will take a while to sink in flower. So be kind to yourself and don’t let that imagination run away with you.

FYI I was diagnosed when I was 21, 23 years ago. My mother was in a much worse state than me, because at first they thought I had a brain tumour.

I just wanted to get out of hospital and get back to university

My friend went through the same thing at the same time, She thought she had MS and I had the tumour. Logical because I was in bad shape

Alas, I felt I was lucky when i was diagnosed witb MS. (we were all devvo’d when she was diagnosed with, and died of a brain tumour.)

It’s a unique illness, and effects us all differently. I expected another horrific relapse, but it never came and has never been as bad as that first attack.

But what I can also tell you is that I swerved the ‘dmds’ (disease modifying drugs)

My mother researched and couldn’t find any compelling long term evidence that they made life better; and as I didn’t have cancer and I wasn’t fighting for my life; that was the choice We made.

Others are different, so you will hear many different perspectives. Many.

Anyway, I did my finals at university with an eye patch in a wheelchair, recovered, bounced back and cracked on with life and living

My mother didn’t pander to me, or go on about it , and when she died 20 years later, I had no real issues, bar a bit of a dodgy eye and a bit less energy than everyone else.

I got a degree, had a family, (beautiful children and the apples of her eye) was a lawyer and lived the dream. It’s only now it’s impacting my life secondary progressive. It’s hard, but manageable.

Knowledge is power, but don’t overload yourself or her, too much at this stage, will be too much!

Lots of exercise and a healthy diet rich in anti oxidants will help as much as you not panicking Chick – that was one of the worst things with me at the start, seeing my mother so upset

. Bless you lovely mum, she’s in good hands with you to walk the path with her.

Much love and light to you and yours 💖


gijs
1 month ago

First of all, it doesn’t have to be MS. Lesions and symptoms are not everything (the lesions should be in the right place, the right size, etc.). If in doubt, she can get an LP. Find a Neuro who will get to the bottom of this.
If it does turn out to be MS – I can only add – ten months for the symptoms to remit is not unusual, if she hasn’t been given steroids. Some of my symptoms took as long as 11 months to remit (my first attack happened many, many years ago, I didn’t get steroids, cause I haven’t been diagnosed back then). So, don’t assume to worst case scenario.
She’s young, after starting the treatment, and maybe getting some Solu Medrol, with all probability, she will bounce back and be able to live a normal life for years and years to come.
The DMT’s are getting better, and we’re getting closer to a one that may halt the progression completely, so don’t assume the worst.
What she needs now is to talk things over and not abandon any plans she has. As @stumbler said, it’s not a one way ticket to severe disability and social isolation, far from it.
But first, push for a firm diagnosis (be prepared that it may take a couple of months, in my case it took many, many years, after starting Tysabri recently I feel great, and im an ‘older’ guy (40).)
Good luck, if I (we) can help in any way, just ask.
Btw, some younger people should have more to say about their perception of the condition, it should give you a better perspective ;).


msmothersucker
1 month ago

@stumbler and @vickim654 thank you for taking the time to respond to me. Your comments are very much appreciated. I may well change my username when I feel less scared. It feels like a death sentence at the moment as we are just left hanging.
The neurologist told her she wasn’t allowed to drive home after the appointment so she was stranded at hospital, scared and alone. If we’d realised she was getting her results we would have gone with her, but she thought it was just a check up and didn’t think it was important.

The neurologist said there were 2 separate incidents showing on the scan and that it was MS. I asked my daughter if she thinks that perhaps she had misheard her or that maybe the neurologist said it could possibly be MS, but she said no, the neurologist has said you have MS. I did find this strange after reading how long so many people wait before they get a diagnosis. It’s her comment of being surprised how few symptoms she has compared to what’s on the scan which really concerns me. Will let you know what the private consultant has to say, hopefully we will all feel a bit better when we have some more info. Yesterday she had really bad burning sensations in her legs and felt on fire. Shed only walked 10 mins up the road. She had to change her trousers at work as the rubbing of the fabric was driving her mad.She said she wonders if it is an allergy to the washing powder, making light of it I think,
Think it is another symptom of MS.


gijs
1 month ago

Btw, I’m living, jogging, exercising, drinking, working as a Uni lecturer, and socializing normally. And I’ve had it for around 18 years now.
You have to be very careful about what you read on the internet. It is a very variable disease. Even looking at shift.ms — many people here disappear for years, not because they suddenly become very bad, but because, as @mermaidia11 said, they start to “getting on with it”, finishing Uni, going to work, starting families etc. etc.


stumbler
1 month ago

@msmothersucker , a diagnosis of MS needs to be reported to the DVLA, but doesn’t stop you driving! Visual problems and specific leg weakness would be an issue, but I don’t think that is a problem. So, was this Neurologist saying that your daughter was unfit to drive? It all seems a bit disjointed………..

I’m not a medical person, but I’ll have to assume that this Neurologist could interpret the MRI Scan and see these two events, separated in time.

Hopefully, you’ll get some reassurance on these issues shortly.

Physical fatigue and sensory symptoms are part of MS. It’s caused by messages from some nerve endings not getting to the brain with the correct level of integrity. If the brain doesn’t know what’s happening at these nerve endings, it sends inappropriate responses. As a result, we get weak muscles, which aren’t physically weak and burning, itching, pins and needles.

The symptoms of MS are fairly extensive but we don’t usually suffer from all of them. 😉


msmothersucker
1 month ago

@gijs and @mermaidia11 thank you so very much for such useful and heartfelt responses. I’m so glad I joined this group as from the responses I’ve read already I feel far less panicked.

It really helps hearing that people have been diagnosed for 20 years and are living happy lives. She is so young, beautiful and I thought so healthy, but looks are obviously deceptive. she has a great outlook on life so hopefully this will stand her in good stead. I’m eager to look in to diet and exercise as ways to help along with medication. She will never be short on support, that’s one thing I can guarantee xxx


msmothersucker
1 month ago

@stumbler I think she told her not to drive because of the shock of just being diagnosed, but we will alert the DVLA, and the insurance co as well, thank you x


gijs
1 month ago

Well, not entirely happy lives, I’m bothered by stuff – rent getting higher, my date being boring, my students getting more and more stupid each year.


marcyg921
1 month ago

Hi @msmothersucker,
First of all I’m very sorry to hear about your daughters diagnosis. It’s something no one ever wants to go through. Now like your daughter I was diagnosed at a young age (diagnosed at the age of 24) after suffering from pins and needles, heavy legs etc, and again like your family, no one in my family has any history of MS so I’m the unlucky soul to get the dam condition. Now believe it or not your daughter is actually at an advantage being diagnosed this early because now there’s a ton of treatments available and those treatments can help repair any damage that MS has caused and also help prevent any further damage in the future.
Next month will be 2 years since I was diagnosed and after having 2 rounds of Lemtrada, multiple sessions of both physiotherapy and talking therapy, things do seem to be on the up for me and if I can do it then your daughter definitely can as well. The acceptance of diagnosis can take a long time and both you and your daughter will go through a wide range of emotions before you finally reach that point where you both truly and fully accept the diagnosis. It just takes time and its also very important to get the help that you both need. It’s there for a reason.
If you ever want to talk just we’re all here for you if you have any questions or if you just want to get something off of your chest.
Best of luck to both of you


maryjane
1 month ago

@mymothersucker
I was diagnosed at 24 and will be 51 next month. If you met me, you wouldn’t even know I have MS. My life has been normal but have slowed down some recently. I don’t know if that is my MS, crazy work schedule or just my age. I have the pins and needles and lost some vision in my right eye but my life is still full and enjoyable. My best advice to your daughter is to not let MS become who she is. She is a person with MS. I hope your daughter is as fortunately as I have been.


brando
1 month ago

it is scary especially when its fresh and everyone handles it differently, I had doctors tell me I wouldn’t be able to play sports or be able to be very active at all.

I have had ms since 2008 and at first I had troubles but after roughly a year of sorting it out and getting the right treatment I have been normal since.

as a lot of people above me have said it’s not a death sentence, it’s just something that needs managing.

best of luck this is scary but you will eventually get through it.

Brando.


edmontonalberta
1 month ago

@msmothersucker

First things first – no use getting worried unless you know exactly what is going on. There are 4 types of MS; be sure she has it & what type. The progression & dmt’s (disease modifying treatments) are all different.

Second – don’t baby her. It is her life to lead; let her lead & step in only when she needs for help. Believe it or not, she is the exact same person you have always known – nothing is different.

Third, there are many examples in my family of leading a very successful life when others say it is impossible. My sister was diagnosed with polio as a baby – the medical profession tried to convince my Mom to put her in Government care since she had five children under the age of five. Mom refused; my sister graduated from University, traveled the world, got married etc…

Her only restriction is how she sees herself & how others relate to her. Both of these are intertwined… Something to think about.


vixen
1 month ago

Hello @msmothersucker, what a terrible time for you all. I hope she will want to join Shift too, as there are lots of young folk on here too. It’s a shame you’ve had to resort to private consultation, I had to do the same. But once the diagnosis is clear, the NHS will hopefully provide everything she needs, as it did for me. Definitely stick to official sites like MS Society when you are researching as there is a lot of inaccurate and alarming stuff out there. Most of us on here would probably agree that limboland is the worst thing. Have courage, things will start to roll out gradually, and you and your daughter will be OK. Stay strong, and help your daughter focus on a healthy diet and lots of sleep. All the best x


hester58
1 month ago

Hi @msmothersucker
The really tricky thing about ms is that nobody has the same symptoms, but once you have got used to this news and have found out exactly what your lovely daughter is facing, you just get on with it. I am convinced that looking after yourself and eating well makes a difference.
I am 60 and have had it since I was 16 although it wasn’t diagnosed until I was 40.
You probably don’t feel very positive right now but that will come back and your daughter will surprise you with how well she copes – my gorgeous father used to say “things are never as bad as you think they will be” And that is SO TRUE. We always imagine the worst.
Sending you all lots of love xx


jeanie
1 month ago

Hi, my daughter was diagnosed last year. Symptoms very similar to your, she was 19, left arm and hand went numb, stiff neck, then 6 months later right eye went blurry with loss of sight. Severe optic neuritis, was given steroids. Very active MS, we opted for Lemtrada as other treatments she did not respond to, she has had the 1st lot of treatment. I feel for you as I know exactly what you are going through and still now I feel emotional exhausted as it was a bombshell. Anyway, she appears fit and healthy, fingers crossed the treatment has put it in remission, she is so brave and I am proud of her, such a strong person, but still does not stop me worrying as a mum.


msmothersucker
1 month ago

@jeanie sorry that you and your daughter have been through this horrendous ordeal. It’s such a massive shock isn’t it, especially being so young. I never realised that it effected younger people until now.

Did your daughter’s sight loss become a permanent thing or did it return after the steroids kicked in? Fingers crossed, toes and everything else crossed that the Lemtrada does it’s thing and works for her. She sounds very brave and obviously has a good support in you. I hope everything continues to go well for you.

Has your daughter changed her diet and exercise at all? I’m very interested to see if eating certain things/cutting certain things out can help. We see the consultant tomorrow so I hope that we will find more out then xx


msmothersucker
1 month ago

@hester58 @vixen @edmontonalberta @brando @maryjane @marcyg921 thank you so very much for taking the time to give your support and such kind and helpful comments. I can see already what a positive and helpful forum this is. I feel so much better after reading all of your experiences and suggestions and no where near as scared and panicky.

We see the consultant tomorrow so hopefully we may get some answers xxx


stumbler
1 month ago

@msmothersucker , you might want to have a look at this website for lifestyle ideas :-

https://overcomingms.org/

You can even request a copy of their accompanying book (for free in the UK) :-

https://overcomingms.org/recovery-program/overcoming-multiple-sclerosis-book/


msmothersucker
1 month ago

@stumbler thank you so much xx


cloudy
1 month ago

@msmothersucker as you can see there are a hell of a lot of us out there but a lot living our lives with only the inner circles knowing that there is anything wrong . I was adamant I didn’t want my distraught mother telling people because I didn’t want or need anyone’s pity I didn’t need to be looked at in any way differently , I had ms since 17 but only half diagnosed 13 years ago mri showing lesions but then lumbar puncture coming clear and we kinda put that to bed and it also calmed my mother down life was great got into exercise and healthy diet which was going great then I got lazy and gave up the running and reverted to not such a healthy diet and earlier this year had another bit of a wobble so mri again funny lesions didn’t go away so it was ms again but my new lumbar puncture is still showing clear so there are completely different disease paths for everyone but for your daughters sake try to not live & breath ms you’ve got to take a breath and try to distract yourself the more stressed you get it will rub off and they do say stress is a big factor …. There is a lot of options and choices with what course of dmt that people can use if indeed any but the neuro will never tell you what to do so wait & see what the private neuro has to say & go from there but there if definitely no need to panic just yet 28 years later and still not on drugs ……. Think I did ok and hopefully fingers crossed your daughter will have a good run 2


annie13
1 month ago

@msmothersucker, I truly feel for you. It is a parent’s worst fear to see your child go through something so big and not be able to do anything to change it.
I don’t think I have much to add to what everyone else has said but I just wanted to say that you, your daughter and your family are in my thoughts.
You asked about diet and exercise. There are a few different diets out there that you can try, I myself follow the OMS low saturated fat diet as the science behind it just makes sense but the one thing that everyone agrees on is that exercise is so important. I was a total couch potato until my diagnosis nearly 2 years ago. Since then I have taken up running for cardio exercise and pilates to build up core strength. It definitely helps with fatigue. Hope this helps. Best wishes


jeanie
1 month ago

Hi sadly my daughters eye sight in one eye has not returned but it was severe….. it can return, but she can drive, had to take a eye sight test and every 3 years from now on. Was speaking to her about you early this evening, she is exercising most days and by looking at her you would not know anything xx


mermaidia11
1 month ago

As I’m up…

@msmothersucker
Thanks for acknowledging my response and your kind words. Appreciated

Don’t jump the gun chick, remember that a inexperienced neurologist can only have speculated, unless they have started diagnosing without the benefit of a lumbar puncture; and proper consideration and examination from an experienced MS neurologist…

Wait to see what the next dude says when he has done just that, and know that whatever happens, everything will be alright
Hugs

…and the dam dude @gijs you had me laughing mate, creased (that acerbic wit …quality)

And isn’t laughter and more laughter the best medicine (and distraction it’s sista?!)

@stumblr u had me gigglin like a geisha over your sex toy post too …!

@jeanie I’m sorry that your daughters eyes are playing up. I can recommend krill oil? It’s just potent omega fish oil, but excellent for eyes.

As princess @nutshells excellent u tube vid will attest. Good research skills there princess.

You asked whether to believe him. Well I know from reading the recent edition of “what the doctors don’t tell you” that PQQ has done amazingly well with mitochondrial repair on initial trials with mice, and they are trying to get finding for trialing for further research, if that helps?
I’ve just started both FYI (forgot what granny always said bout cod liver oil ..)

Good luck and good research princess x


msmothersucker
1 month ago

@mermaidia11 @jeanie @annie13 @cloudy @stumbler @hester58 @vixen @edmontonalberta @brando @maryjane @marcyg921 @gijs @vickim654
Hello all,
We saw the consultant yesterday. A very nice and informative man. He diagnosed my daughter with RRMS. She has 6 lesions on her brain and 2 on the spine. The 2 on the spine have caused her symptoms. The 6 on her brain we have been lucky with and not manifested as a physical symptom.

So he said she is classic MS case, he is going to now be our Dr, but will do it through the NHS. He is going to put is in touch with the MS nurse who is going to teach her how to inject plegridy every fortnight. This all should happen before Christmas. He has told her to take daily vitamin D, the strongest level we can get over the counter, and to eat well, take exercise and get out in the sunshine.

He says with the drug it should keep the MS at bay and for symptoms not to worsen. He says she should be able to lead a full normal life and it is very good to have been diagnosed so young and early on in the disease.

He was very positive and we all felt much more positive coming out of the consultation. I’ve looked up plegridy since getting back, it looks like it has a 30% chance of working. He didn’t mention that to us, but maybe it is a case of seeing how she goes and keep monitoring. He said that he will do a contrast MRI next year and that she will need blood tests regularly to see that the drug isn’t damaging any other areas of her body.

All in all we now feel like we have a plan and don’t feel quite so much in limboland anymore. Thank you all for your support, it really has made a difference xxx


vixen
1 month ago

Hello @msmothersucker, great that you have a good consultant. Living near good services is key, lots of people don’t get access to an MS nurse. And he’s right, thirty years ago people often waited a decade or more for diagnosis.

Don’t worry about the 30% statistic. Your consultant is the closest to an ‘expert’ you can get. He will be comparing your daughters mri and patterns with other cases. And the thing is, after a time and if your daughter does happen to have a relapse, she can be moved to another DMD. Us RRMSers are overrun with DMD choices these days!

The most important thing your daughter needs is lots of rest, balance and a good diet. You can help her understand that MS needn’t cut off all the options that her 20 year old peers have. She hasn’t changed as a person, and can still do everything in life’s plan. There may be modifications along the way, but she will be fine, and so will you. X


stumbler
1 month ago

@msmothersucker , it was worth the money to feel that you are now more in control.

As well as the great advice from @vixen above, you also need to ensure that any stressful situations are effectively managed. Stress can be a major antagonist of MS.

Let’s hope your daughter can now get her life back on track. 😉


strictlysoca
1 month ago

You’ve done research about effective disease modifying treatments and you are right to question the decision about the drug offered. The latest thinking is treat early with the most effective treatment rather than use the weakest and see if you have a relapse.
Check this out
https://www.msbrainhealth.org/treatment-decisions/early-interventions

This is a great initiative by some of the most progressive neurologists.

To be frank I can’t understand why anybody is prescribing the injectables CRAB drugs any more unless the patient is very risk averse. They also have some rubbish side effects such as flu like symptoms and other problems. Sorry if that’s a bit strong but time is brain.

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