My 20 year old daughter has had what I think are a several red flag episodes pointing to ms. I don’t know whether to encourage and advise her to see her GP or leave well alone. Sometimes ignorance is bliss; I don’t know how I would have dealt with my diagnosis if I had found out years earlier. I know when I was diagnosed it made a big impact on my life and I wouldn’t want her to go through that unless it was absolutely necessary. Of course the episodes could relate to something completely different but if she follows it up she might be put on the ‘limbo list’ which must be devastating in itself. The episodes weren’t severe enough for her to get medical advice but they were certainly neurological (for instance numb leg and double vision) and she is forever tired out and she’s not anaemic- OR am I overreacting because of myself? I just recognise similar episodes from when I was younger and I fear the worst. I don’t know what to do. Should I keep my nose out because I know the MonSter will rear its ugly head eventually.
Difficult one Sue, as you say ignorace is bliss, but early access to a DMD could help with long term symptoms/disabilities caused by relapses going unchecked.
i’ve had the same concerns with my youngest son. it was torture so it was a relief when he decided to go to the gp.
fortunately it wasnt ms but something else that was easily remedied.
are the symptoms bothering your daughter? just imagine if you didnt have ms, would you tell her to see the doctor?
it could be totally unrelated to ms and could be treatable.
good luck to you both
Such a dilema for you. Just wanted to say that crochunter posted on here a little while ago and was going through something simular. Perhaps you could pm her to ‘talk it through’ with someone who understands what you are going through. Just a thought.
I hope this is not ms but if it is then the treatments are progressing so well now that it may not even impact on her life at such a young age.
I sympathise with your dilemma, but guess it comes down to what she wants to do in the end. Have you discussed the matter with her, because I suspect the possibility of MS may have crossed her mind?
One thing worth considering is taking a vitamin D3 supplement, as several studies suggest that low levels can increase the risk of getting MS. It helps with a variety of other medical conditions, so worth checking out in my view.
Hi - for my two pennies worth I expect she will already be thinking about MS herself having seen you with it but is probably worried about voicing it to you.
I think you should broach the subject and advise her to get checked over because as Carol said, you would both be relieved to find it’s something else entirely or, god forbid, as ‘Floopy’ says, if it is MS she should have access to DMDs as early as possible for her longer term good.
I sincerely hope it isn’t but better to face facts rather than sustain fears…GOOD LUCK!
I had the same worry about my daughter a couple of years ago - turned out to be B12 deficiency, which is and should be treated because it can be serious if left alone.
So my vote is encourage her to see her GP.
As the daughter of someone with PPMS I knew what I had got as soon as symptoms started.
I did nothing for many years until the symptoms were affecting my abilities at work,because I knew when the ball started rolling it wouldnt stop.
I chose when the time was right for me to seek medical advise.
I have no idea what your daughter is like or your relationship with her. If you normally talk openly about things I would suggest you are both in the same wondering whether to say something boat.
To me would the episodes she has already had meet the mc Donald criteria for DMD? If so then starting them sooner rather than later would prompt me to raise the subject with her.
At the end of the day I would go with your gut reaction.
You know where I am
Thankyou for all your valuable replies,its no longer a dilemma, you have all helped me to make my mind up on what to do.
I am going to get her to take VitD3 straight away and suggest she goes to see her GP with a list. She did ask me a while back, very dubiously because she thought it would upset me so I made light of it because I didn’t want to worry her.We are very close and open so maybe it’s time to broach the subject again. Like you Pip, my mum had PPMS and I just knew when I started so I think maybe she is the same with me. Thanks Karen, even if it’s not ms and is something else it still needs seriously looking into.
Your comments have made me realise that ignorance is not always bliss, sometimes it’s burying your head in the sand.
Think I will ring her this evening for a chat…
All the best for both of you.
Hi, I would have a chat with her to find out if she feels she should see her gp to find out why these things are occurring. You never know she may be worried and not want you to be worried as well. After all as Karen has said it could be something else altogether.
Get her Critical Illness Cover before she mentions any of her concerns to the medics.
Top tip!! Wish someone had told me that before I was diagnosed, I’m kicking myself now.
How scary for you and your daughter especially with the multi-generational history.
I really hope your daughter doesn’t have MS (obviously) but if she does it is more important than ever nowadays that she be diagnosed as early as possible. The evidence is well and truly in to show that the earlier one is started on a DMD the better the long-term outcomes are. Longitudinal studies are now showing that the fewer relapses there are in the first 2 years of the disease course, the longer it will take for the disease to convert to SPMS. Also there is evidence showing that the more disability one accrues early on the faster you will become more severely disabled in time. Here in Australia it is now standard procedure for people to start on a DMD after their first neurological event if the MRI is suggestive of MS (Clinically Isolated Syndrome) as starting DMDs so early has been shown to delay and even prevent true MS developing.
Very good reasons not to delay getting a neurological opinion and ruling MS out or if it is MS getting your daughter started on DMDs.
All the very best and do let us know how things turn out,
Hi Belinda, yes it’s very scary. When I first went to my neuro I mentioned my mum had PPMS and I am sure she said it wasn’t hereditary, it makes you wonder doesn’t it?
I rang my daughter last night and arranged a girls night in at the weekend and I will discuss it with her then, I think we need eye contact on this occasion and I can’t give her a hug on the phone…
Thanks for listening all
Do let us know how you get on. Thinking of you.
hi sue. when i first got my symptoms i went to my gp,which in turn didnt help me as he recorded nothing bar a few thins relating to my regular visuits. i was told i was an attention seeker,and to “get on with it”. i duly did,and i got worse. this was 95,i was diagnosed in 98. the damage that was done during those years,were seen very clearly on the MRI. i was driven mad knowing something was really wrong,but the only person who did believe me was my mum! dad still thinks im not really ill,lol. mum sadly died in 2010. i was relieved that i wasnt imagining these symptoms. for me ignorance made things worse.
MS isn’t hereditary in the strict sense of the word in that it isn’t passed on from parent to child without fail and isn’t purely a genetic condition. Identical twins for example have about a 40% chance of having MS if the other one has it whereas if it was strictly hereditary and purely genetic then they would both have it 100%.
But there is a slightly increased risk of getting MS if a direct relative has it. The risk factor of getting MS if no immediate members of your family have MS are 1 in 750. If you have a parent or sibling with MS, your risk increases to 1 in 100. So yeah, given your Mum had MS it put you at higher risk and your daughter is also at higher risk than the rest of the population too.
Thanks Belinda, I didn’t realise that was the case. It explains a lot…
Thanks everyone for all your advice, it’s helped me see the wood through the leaves! I will update you when I have some news.
I am hoping this thread will be valuable because there will be others out there with exactly the same dilemma I had and the advice has been priceless for me. If only it could be put in a questions and answers book form!