Hi, I am 25 years old and I have MS, as well as another condition called Hereditary Spastic Paraparesis. My partner and I have been looking into starting a family, the genetics clinic told us if we decided to have a child that the chances of the baby having MS are extremely low, however for the HSP the chances are 50%. I’m feeling so confused, I have always seen myself as a mother, and just the thought of never being one is unbearable. Would I be selfish to want one??? Please help x
Oh wow! I have also been diagnosed with HSP!!! It isnt often I come across someone else with it.
I was previously mis-diagnosed with PPMS for several tears.
So I have learned a lot about both conditions.
Is it definite that you have both illnesses? have you found other family members with HSP?
In my own case, there is no-one on my mum
s side with it, but I was brought up by my step dad and know nothing of my natural fathers family history. Therefore my current diagnosis is spastic paraparesis/cause unknown.
last year, i saw a neuro who had extensive experience of MS and HSP, so felt he was giving me the right information. He said if I did have PPMS I would be in a worse state than I am and that there would have been some positive results on the many, many tests i`ve had.
I suffer from severe mobility problems and bowel and bladder problems too. My upper body, apart from a deaf right ear, is good. I also have spasms and spasticity in my legs.
So back to your question…would I have had my children if I had known they could be affected by HSP? I dont honestly know. my sensible head says no, but my heart could have said yes.
Have you had genetic counselling? I have declined an offer of genetic testing. This is beacuse there are currently 30+ hsp genes known, but they may not show on testing. Are you a member of the HSP support group? They have a lovely lady called Stephanie, who is a counsellor and may offer help and advice.
I`d love to keep in touch and learn how you go on hun.
Good luck and lots of love, Pollyxxx
Wow! You’re actually the first person, other than my dad, who I’ve spoken to with HSP ever lol. Lovely to speak to you hun.
I definitely have both conditions, as I say my dad has the HSP and the MS has shown up on several tests, they can’t say which kind of MS I have because of the similarities of the 2 conditions.
I was told that there are only 4 known cases, including me, of people having both illnesses in the UK.
Hopefully you’re neurologist is right hun, and you do only have the 1. My boyfriend jokes that I’m being greedy having the 2 lol.
I also have bad problems with mobility, can still walk but spend most of my time in a wheelchair, because I can’t walk far. Have a hand tremor, which makes certain tasks difficult. Also have bladder/bowel problems. Spasms. Muscle tightness. Bad fatigue (think I dislike that bit the most, try and sit down to watch a film and nod off half way through lol. Cognitive problems/memory problems, the list goes on hehe. Lost vision in one eye once, but luckily didnt last long and it healed properly, was scary though.
Do you work? I can’t , very annoying, seeing as though I went to uni especially, but it’s just not possible, have done few hours volunteering before, but even that proved to be too much.
Do you have a family then, Polly?
That’s exactly where I am, sensible head says no, heart says a big, big yes! Really is confusing and so frustrating.
I have been to a genetics clinic and also to speak with fetal services. Genetics told me the chances, they also mentioned IVF to maybe lower the chances, but as you say there are a lot of genes that can cause HSP, so firstly they’d have to identify which one I have, then send me and boyfriend to London for special genetics IVF. I said no to them, but the more time goes on, the more of an option it is. Luckily, fetal services said the pregnancy and labour needn’t be any different to anyone else’s with extra support.
I wasn’t even aware that there is a HSP support group, didn’t think that there would be, considering it’s so rare. Do you have details on how to join, please?
We should definitely keep in touch.
Thanks for your help.
Take care, Sarah xxxxxxx
d love to keep in touch and a pm is on its way to you.
Thanks hun x