Forum

double heartache

Hello, could anyone please give me a bit of advice , I am very worried, My daughter has Primary Progressive MS, she was diagnosed in 2006 after the birth of her 3rd child, she is now in a wheelchair, she is being looked after by her husband, 2 weeks ago he became ill, he was taken to hospital and was diagnosed with Relaxing Remitting MS, they are both 32 yrs old, the dr says the odds of them both having MS is very rare, I am now worried about my three grandchildren 12, 9 and 7 does anyone know if there could be a chance that they both carry a gene that they could have passed on to the children ? maybe i am worrying for nothing but this has been a real body blow to me, and my family I would love to know my babies are going to be ok in the future

hi

what a blow, double whammy!

just ask a doctor if there is a childrens brand of vitamin D and what dose they should take.

please dont worry yourself into the ground.

your daughter and her family need you

carole x

Thank you Carole

Do you think that would stop the onset at all

Carolyn

Hi Anon,

I’m sorry to hear that both your daughter and son-in-law have MS.

There was a similar post just recently, but it’s still very rare for both parents to be affected. So rare, that I’m not sure there are reliable statistics on the odds of children being affected.

Yes, they will have a higher risk than the general population, I’m sorry to say, but they still have more chance of NOT being affected.

We already know MS is not caused by a single gene, that is either passed on or not, but by a combination of (at least) dozens of genes, and possibly many more, yet to be discovered.

Someone with one or both parents with MS obviously risks inheriting a higher proportion of “risky” genes. But they inherit only the risk, NOT the disease itself. It’s known that by no means everyone with “risky” genes goes on to develop MS. Even among identical twins, who share the same genes, the odds of one getting MS if the other does are only about 1 in 3 - i.e. there’s more chance they would NOT get it! This means genes alone don’t “give” somebody MS. You can be born with a predisposition towards it, but not with an inevitable destiny that you WILL get it. Unfortunately, there’s still a lot we don’t know about why the same genes that give rise to MS in some people seem completely harmless to others.

Tina

Hi Anon

I jsut wanted to offer my thoughts on this - what a blow for your whole family. I am in a similar boat, my husband and I both have RRMS. Although we dont have children yet - we will be trying as soon as I get the guts to come of Tysabri. In talking to my Neuro about the chances of our children having it he really mirrored what Tina says above - there is very little evidence to back this up but he said to us that the chances are, although higher than parents without MS - very slim and if it were him (opinion - not medical fact) he wouldnt even take it into consideration.

I would imagine its harder when the children are already here. I am sorry about your news, and I hope you find a better answer than mine.

xxx

Hi Anon

(I already posted this but it disappeared…)

My husband and I both have RRMS. Although we dont have kids yet we will be trying as soon as I get the guts to come off Tysabri.

In talking to my neuro about it he said (like Tina above) that the chances would be higher than if we didnt have MS but if it were him (personal opinion not medical fact) he wouldnt even take it into consideration.

I am sure my original post had more info on it, I dont know what happened to it.

I am sorry to you and your family for this news.

xxx

Oh love, that is a big worry for you.

it never rains…etc…

as a loving mum and grandma, telling you not to worry is as daft as telling you not to breathe, eh?

That`s what mums and grandmas (plus loads of other folks) do!

I also am worried that my daughters and grandchildren will develop my spastic paraparesis, which means they have a 50%chance of getting it or not.

Worrying makes not a blind bit of difference, I know.

Fingers and toes crossed for you hun.

luv Pollyxx

God, I am so sorry to hear that. I was on a newly DX day last week, the consultant spoke about factors they think causes m.s. In the venn diagram we were shown there were 1.environmental factors, 2.genes and 3.chance. There is not one specific gene that causes m.s, they also think that epstein Barr and glandular fever could be a ‘trigger’ for the development of this horrible disease. Vitamin D also plays its role, but like most things to do with M.S no one knows for sure…otherwise we would have a cure by now!! He also said that if one parent has M.S, there is a 97% chance the child will NOT get M.S…so a 3% higher risk than the general population…i’m afraid no info if both parents have it. I hope this makes some sense. Take care xx

Thank you everyone who has replied to me, we will all stay possitive and take all your kind words in and hope for the best

Carolyn

Both my ex husband and I have ms. We have a 21year old son together. I tell him to keep fit, take vit D. Any other advice I can give him? Lynn

lifes cruel, this illness is cruel, the chances of both parents having ms is so rare its awful news.I think you cannot pass it on to children through genes me and my husband both have autoimmune problems.I was worried our children could have autoimmune problems too as they get older.Best not to dwel on what could or could not happern it will only make you ill with worry. xx julie