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Autoimmune disease

To wonder why this is ignored

6 replies

ShoeGenie · 02/05/2018 01:02

Ok, so I did HSCT, I had MS. Thankfully now stopped.

However talking with DH earlier. Since HSCT over a year ago I've read a lot of blogs of other people that have done HSCT for MS. Overwhelmingly the people with PP just seem to have it randomly, but the females with RR seem to have been triggered by pregnancy (myself included). Yet the effect on auto immune disease triggered by pregnancy is never talked about. Why?

It's really pissing me off. Why don't they tell you and say 'You might get this' along with all the other risks?

OP posts:
timeistight · 03/05/2018 13:29

Can you explain the sets of initials please?

TeeBee · 03/05/2018 13:32

Because it's the symptoms of subclinical MS that are triggered by pregnancy, it doesn't cause MS. Would you have changed your mind about starting a family if you knew of the small risk of unrecognised conditions coming to light? Or would you think it might just cause unnecessary anxiety?

SleepFreeZone · 03/05/2018 13:33

It stands for Haematopoietic stem cell transplantation. Shoe my DP has RR MS. Has had it got around 10 years, under control thankfully. He takes Interferon every week. We have looked into this therapy but it really seems to be a mixed bag of results. It’s definitely helped some people but seems to have had no positive effect on others.

ShoeGenie · 05/05/2018 14:55

Would you have changed your mind about starting a family if you knew of the small risk of unrecognised conditions coming to light?

Honestly, if I knew what was coming we would have adopted. I had a terrible pregnancy from start to finish and was hospitalized many times, then I found out about the MS. Pregnancy was not good for me.

SFZ Glad his is under control. The aim to to stop progression, if you see any improvements that's a bonus.

OP posts:
TeeBee · 07/05/2018 05:17

But pregnancy completely skews the immune system otherwise your baby would be rejected. It can exacerbate all sorts of conditions and make the mother vulnerable. What can people do though? Never have babies?

ThumbWitchesAbroad · 07/05/2018 05:26

I think if you already have an AI condition, then you are given extra advice about what may happen in pregnancy, but no hard and fast info can be given because it's different for everyone.

Some people experience almost complete remission of their symptoms while pregnant, while others seem to get worse.

Because the immune system does have to be adapted in pregnancy, as TeeBee has said, then it can cause all sorts of interesting knock-on effects, but they're relatively rare in terms of the number of pregnancies that happen. You can't warn everyone about everything, so they tend to stick to the more common occurrences as warnings.

But then most people who don't have an AI condition get pregnant before consulting a medic of any kind - they only go once they're pg, and it's a bit late by then to warn you.

I understand your frustration but I think you're being a touch unreasonable.

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