I haven’t posted here in years as by the grace of god i have been symptom free for probably 12 years. However just a few months ago my son was dx with ms and now the baby of my family Donna is going through the dx process. I am so bloody angry and upset. I took my daughter to A&E today she is waiting for an MRI. i feel like such a low life for passing on this crap to my family. I also blame my side of the family for not knowing medical history as i am sure there was more than me further back must have had this fkn brain rot. Sorry im ranting im just absolutely gutted that is all needed to blow off
you will be told it’s familial - It can’t be said to be hereditary because no specific m.s. gene has been identified. Like me my daughter has m.s. I believe she has inherited m.s. from me. The medics have NO interest in testing/examining us for a common m.s. gene. Why?
surely if genetics was researched it would give clues as to how to stop it.
it’s bloody awful when your kids have a long term condition.
both of my sons have one.
eldest recently diagnosed with type 1 diabetes.
youngest has a connective tissue disorder.
i have ms.
husband is in rude health!
as a family we gel together extremely well!
Myself, my sister and my first cousin all have diagnosed MS, and the sister of my cousin has been told that worrying symptoms that she’s been showing over the last few months could be MS, she’s still having tests. Hereditary, I dont know ? Family link within genes, in my opinion without a doubt.
MS cannot be considered an hereditary disease because it is not directly passed to every child of a person with MS. There is no doubt that genetics plays a part in our risk of developing MS, but there are many other factors too, including especially environment. Were it based entirely on genes, where one identical twin has MS so would the other. And they don’t. Plus, it would be dire news for all parents with MS.
Have a look at https://www.mstrust.org.uk/a-z/risk-developing-ms
Having said that, I really do feel for any parent with MS whose child develops MS. It must make you feel at fault. It’s a terrible shame, and those families where MS strikes many members are obviously more likely to believe that its genetic.
I am the only one of my family to have MS. Although my family is plagued with a variety of auto-immune diseases.
Amazing how little is still known, only a few stats, from very select places, and years ago. Yet the research stumps up a few old variant cancer pills, and potions to slow the immune system down. Agree if your body’s weak to the cause you get it, so it has to be genetic by the procreation factor, but how can anyone know this? Your never warned by doctors of the risk, so how can you take the blame for this? Wonder if Hitlers mum, and dad carried a rare gene too? As he was gifted with their genetic pool, and what a great chap he turned out to be, but was it their fault?
hi Thank you all for replies, I was very upset when I posted my rant…You know what life goes on we will all get over it as there is nothing I could do about this I realise. I will always be here for my kids and will help all I can. My poor babies didn’t deserve this though. Lesley xxx
Hi Lesley There is no MS history in my family – I’m the first – but I believe my 24-year-old son is now showing symptoms. I mentioned my fears to my neurologist at my annual check-up last month and he suggested Dan sees a neurologist and even put this in writing to me so Dan could show his gp. Much to my frustration, his gp didn’t refer him. It’s gonna be a long road! Emma x
Newbie here, Just been diagnosed with CIS, although to be honest I’ve already convinced myself it is/will become ms. My mum had Ms, and although me and husband are trying for a baby, I have serious doubts whether I would want to put a child through what I experienced as a child, and having a mum with Ms. So many question marks over our future at the moment. I know that even if I do develop ms it could be completely different to my mum’s, I’m still petrified.
Welcome to the gang no one wants the right to belong to.
Keep in your mind that at present, you have CIS. If it does convert to MS, then as you yourself have said, your experience will be different to your mothers.
If you are trying for a baby now, then do it before you do (possibly) convert. Then you’ll be able to take disease modifying drugs after the baby’s born. That will help keep (possible) relapses at bay.
If you put off having a child until later you’ll not be able to take DMDs when you really need them (again possibly).
And if you put off getting pregnant, how long would you wait before you accept that you’re not going to get MS? Until it’s too late? Ie you become too old!
Being frightened of the possibility of MS is completely reasonable. MS sucks. Just keep in your mind that right now, and possibly for always, you don’t have it. And if the day comes when you do, you and your husband will deal with it.
So, have that conversation with your husband, decide together what you are prepared to risk. And enjoy being MS free. Maybe for years, maybe forever.
Best of luck.
Thanks sue. The baby thing is slow going as I pcos as well. Just feel like we aren’t having much luck over the last year or so (to put it politely). I think we’re prepared to keep trying if the CIS stays as it is right now. Any changes or developments, and I think we would reassess the situation then. But bless him, he’s one of those guys thats born to be a dad. It’s so sweet, and I hope he/we get that chance…
I was diagnosed with RRMS in July last year. My maternal grandma had MS and sadly died from it when my mum was only 10-so I thought that it might be helpful for you if I provided my own personal perspective on this situation.
Naturally my knowledge is quite limited on MS as I’ve only had just over a year to get my head around the whole thing-but I shall certainly try my best.
I certainly do not blame my mother at all, for ‘passing on’ the MS gene to me (if that is indeed what has happened?). When I was diagnosed it was explained to me that although MS was not thought to be hereditary, it was thought that there could be a ‘genetic factor’ involved (the vague terminology, uncertainty and limited knowledge about MS are an aspect that I’m slowly getting accustomed to).
None of my siblings appear to have it and I hope that none of their children will develop it-so in some ways I feel like I’m ‘taking one for the team.’ The only thing I blame my mother for is the amazing, kind and loving environment that she brought me up in-and I’m eternally grateful to her for all of the sacrifices she has made on my behalf over the years.
I personally am extremely aware of the fact that my condition, most probably, is bringing up feelings of guilt and echoes of the horrendous memories of her mum dying from MS (back in the 1950s). So in some ways I feel guilty for possibly being the catalyst for those feelings. I’ve told my mum that I don’t blame her for my MS at all-it’s not her fault as far as I’m concerned and that feeling is not something that’s going to change.
Hope that helps in some way, Matt
Hi Matt## Thank you for your reply, I was dx with RRMS 14 years ago and apart from the three or four years before hand with ms symptoms i have been very well since. Have taken DMDs for years, however i came off them last year as had enough of side effects. My son was dx a few months ago and my daughter is going through the process at the moment My siblings and their children don’t have it, neither did my parents. So how on earth did i get it and even worse pass it on to my kids.## They are not blaming me, I am blaming me. Like you they have both assured me that they had a wonderful childhood. Oh but the guilt i am finding quite unbearable at the moment. Hey ho will get over it eventually though. I hope you are keeping as well as you can be.## Lesley
hiya## Thank you for replying, Yes it could be completely different for you. Don’t put your life on hold waiting for it to happen though. When I was dx in 2004 all i could think about was wheel chairs and incontinence pads, lovely. However my doc put me straight there. Although i had my three kids by then, I went back to gain an education and held down 2 jobs as well.## I have been off my meds now for more than a year as was sick of the side effects and so far have had no relapses. I have been under a huge amount of stress on and off over the years and and still no relapses. My way of dealing with it was to aim for goals and get them done. I don’t know if that has helped me or not. Just don’t let it stop you from having a life you can still achieve your hopes and dreams
Thank you for your reply.
You gave me a chuckle reading it.
You shouldn’t feel guilty over something you have no control over.
Even the experts don’t know what causes MS. The best they have come up with so far is that it’s a mix of heritable, geographic and environmental factors. But that’s just a guess based on what they have eliminated. If there was anything that we could do to prevent it happening we would have certainly heard about it by now.
On the positive side you are not helpless. You are equipped to understand and guide your son through whatever he may have to go through. That’s a gift that some mothers can never offer their children.
all the neuro consultants and all studies and google says no it’s not …but you see …everybody can find a connection of it in the family myself…mother…grandmother so for me is hereditary no siblings to compare but i will watch my son with a eagle eye for it (hope it won’t be paranoia
Not everyone can find a familial connection. I can’t.
I feel for those who have children who have seemingly ‘inherited’ their MS. But it’s more than genetic. Otherwise many more people would have a parent or a child, or a sibling with MS I know there are some families where it appears to be rife. But even in those families, there are members without MS. Thankfully.
Me either… I am the only person in my family to have MS.
I have four friends with MS. Three of them have no family with it but one of them has an extensive familial history of it. Likewise, my hubby inherited the BRCA2 mutated cancer gene from his mother, as did his sisters and he’s passed it on to his daughter. His mother had an horrific history of repeated cancers and yet neither he nor his sisters (who are all in their 60’s) have had a single instance of cancer. So there’s a gene there but something triggers it?? Maybe there’s a similar mutated gene theory to be explored ??!!