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Worst timing ever

I can usually shake off most bad days but having a really rough time and think I’m wonder if I’m creating more worry where there needn’t be. Tomorrow I reach my 1 year milestone since my diagnosis which has made me feel rather reflective on how I got here. Then find out today that my dad (who has had an op to remove a cyst from his spine but is still experiencing increasing problems walking and now with his hands) has “abnormalities” in his mri. They are yet to clarify but right now it’s all too much, too familiar and still raw. It also makes me worry I may have passed it to my daughter and truly don’t know how I’d live with myself if I have. There are a few things she had experienced which have caused me concern which whilst no one has raised ms as a possibility I worry if they’re opinion may have differed had they known what they do now. Tbh I am way to terrified to explore the possibility and want to make sure she grows us as unaffected by this disease as possible so I am just adopting a wait and see approach as would not want her subjected to more tests when she has had nothing untoward for years. I am probably making links where there are none but this last year has been a real learning curve and I wish I could just undo it all. Thanks for reading my grumbles, feel like no one else gets it.

hi newbie

the one thing i have learned is that stress makes my ms worse.

therefore i refuse to allow myself to get stressed.

loads of bad things have happened that are not due to ms and i acknowledge that they happen but then don’t give them headroom.

yes, i’m in denial but that’s ok.

as for your daughter, well our kids are a worry but as you say ms has not been raised as a possibility so take it as she is healthy and watch her enjoy her life.

come and join me in denial, i thoroughly reccommend it!

carole x

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Ah the old friend denial, can be found relatively easy, just find brain sand and bury your head and your well on your way !

May I second Carole’s recommendation…

Enjoy your daughter mine is six and it has crossed my mind and made me cry but all the worry in the world wouldn’t change it so I refuse to play that game

I really hope your dad is okay and you get some respite from this worry soon, stress definitely makes my ms worse !

X

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Hi,

It’s not surprising that, when bad things happen that you start lookng around for other bad things. It’s nature’s way of putting you on high alert. The downside is, that even when there isn’t anything to worry about you are still looking for trouble. Your first anniversary is highlighting your MS and together with your father’s illness is close to creating a perfect storm of anxiety.

It’s natural that you worry about your daughter but there’s no point in feeling guilty about somethng that hasn’t happened.

Carry on grumbling because we all “get it” here. And we appreciate the need for a good grumble better than most.

Best wishes,

Anthony

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Hello

MS is not generally a directly inherited condition, genetics does play a part, but just like all other auto immune conditions, there are a whole slew of factors which make a particular AI disease or condition more likely. Have a look at https://www.mstrust.org.uk/a-z/risk-developing-ms It will give you a better idea of how likely it is (or isn’t) that your daughter may develop MS.

In particular, think about the link for identical twins. There is a 1 in 5 chance that the identical twin of a person with MS will also be diagnosed. And when you consider that they share their genetic code, plus have the same environment growing up, have probably had the same exposure to vitamin D, have eaten the same foods, have probably come into contact with the same viruses and yet they are still not definitely both going to get MS. And the link for children of a parent with MS is 1 in 48.

So, unless your daughter shows very strong signs of having MS, I wouldn’t worry her by making her expect it.

Sue

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I truly believe that stress can trigger off your MS symptoms, and dare I say may even trigger off your initial attack !

I don’t mind admitting that I’ve always been a “worrier”, whether that be about work, family, or something that others might find trivial, basically I do stress myself out, always have done.

Not long before my very first attack my father in-law was told he had bowel cancer, and had an urgent operation after which he suffered 3 heart attacks whilst in hospital, 3 weeks later I was told that my company was closing down and I was being made redundant after 32 years working with the same company, going there almost straight from school, so being laid of at 50 and with no other qualifications other than working in a plastics factory for 32 years things didn’t look good on the job front, the stress and worry of everything that had gone on was now starting to build up.

It took a little while to find a job but almost immediately but again was laid off, things were going from bad to worse.

About 3 months after all of this my mother in law was told she has Pancreatic cancer, she passed away within 3 months.

By now I had started to show symptoms of MS.

Within another 12 months of my mother in-law passing away and my own father was diagnosed with bowel cancer, and I was diagnosed with the MS.

1 year later my own mother was also diagnosed with Pancreatic cancer, she passed away 9 weeks later !

Over the space of 4 years I lost my mother & mother-in-law to Pancreatic cancer.

My father & father in-law both diagnosed with bowel cancer, and I was diagnosed with MS, oh and I was laid off twice.

So if stress can be a factor in MS, well I think I’ve hit the bloody jackpot !!!

Hi, you’re already telling yourself that the right way forward is to not cause your daughter any undue concerns re ms.

As others have said, ms isn’t genetic per se, but there can be familial ties to it.

I was wrongly diagnosed with MS for 10 years.

Then my diagnosis was changed to one that has a 50% chance of being passed on.

I worried myself stupid with the same thoughts as you…how can I live with myself if I’ve passed this despicable condition down to my kids or grandkids?

Fact is we can do chuff all about it, can we?

Let’s just do our utmost to be loving parents and forgive ourselves for things we can’t change, yeh?

Love pollsx

Does MS run in the family ?

That was the first question I put to my Neuro.

His reply was that theres no scientific proof that it does, however genetics could play a part, but again it’s only a thought without proof.

The reason for asking the question was that not only do I have MS, but also my sister and first cousin have it, and now the sister of my cousin (my other cousin and same family) is showing worrying signs of MS and is currently having tests !!

Thank you all for your comments. I know they say it’s not hereditary but I just keep hearing of people who have it and their parent /grandparent etc had also suffered with it. I know some of that is just being so much more aware of it to pick up on the links which you wouldn’t have before. It’s always been there as a concern in the back of my mind just this with my dad has dedged it up for me at a time when I’m feeling vulnerable I guess. Everyone has been so supportive but after a year you can’t help feeling they’re a bit bored of it. Jactac - wow… I mean that sounds like an unbelievably cruel set of circumstances you have had to deal with. I really hope things are improving I’ll get back on track I’m sure, just got drag myself out of this mope. I used to do loads of exercise to keep busy but let it slip and struggling to get back on track with it. Got my MRI and annual review coming up so hope will have some positive news. Thanks again x

Just adding my thoughts - re the worry about passing on to children - I comfort myself with the thought that with a 1 in 48 chance, they are much less likely to develop MS than to develop it. Also, treatments are so much better these days in terms of the DMDs that are available.

Hope things are ok with you

Bouncy

My dad has had some feedback on his mri and he had his head and spine scanned and the abnormalities are in his spine and appear to be trapped nerves. So that’s really positive. I am going to make a Dr’s appointment today though as I am really struggling to control my emotions and getting symptoms like I’m hormonal (hot flushes/breast pain) but I went through the menopause about 3 years ago! Not sure what’s going on the littlest thing just makes me so upset and angry think there’s more to it than the ms