Hi, I’m Natalie and very new to this. My mum had primary progressive MS from the start of her diagnosis, it took over thick and fast within the first year of diagnosis she lost her ability to walk and was catherterised.
I’m really confused as I’ve read a lot of MS and a lot of people although a challenging life they live on… my mum only had 8 years of diagnosis, she was unable to walk, hold things, talk, swallow or hold her head up… this is only 8 years! Her diagnosis come on thick and fast and 100 MPH, why is this? Why did she have to have such a horrific version of MS? Is this a popular thing dying from only 8 years? She was a adult baby, but my baby. I miss her so much.
Sorry to hear about your mother Natalie. Ive only been diagnosed with primary progressive in last September but can tell in that short time my balance and walking has gotten worse.
My Mum was exactly the same. I was 15-16 when she was diagnosed and 23 when she died at 59. I’m 46 now and was diagnosed myself last year.
Obviously as it was a long time ago, there were no treatment for any MS at all. There were some trials, but they decided my mum was too progressed to try any. I think that maybe my Mum had it for much longer than we all knew, but it was perhaps put down to other things, both by herself and the doctors or ignored.
I guess there is not much anyone can say except to say that it’s so unfair. I was told by my nurse that she felt it was not usual for it to progress so quickly, but like I said, maybe it just seemed that way, but actually she had it for some time without knowing.
I feel a huge sense of appreciation that I am receiving treatment that is working, but also some sense of guilt that my Mum didn’t get that opportunity.
I am so sorry for your loss and I hope that in time you find some peace.
Hi @Foxy. My mum was also too advanced for any treatment, I’m only learning now that there is some! My mum had nothing at all only vitamin injections and something in her stomach as she was sat down all the while. I’m so sad but I’m also so scared I may get MS, I was told it’s not genetic but I am seeing lots of people who’s parents or parent have Ms turn out to have it too.
My understanding is that the treatment for PPMS is not as advanced as it is for RRMS, but if I’m wrong anyone, please correct me.
It isn’t genetic or hereditary because it’s not guaranteed that you will get MS. It’s just that you have a higher chance. No one else in my family has it and I have 2 sisters and a brother, all with grown up children.
Please don’t let this fear get in the way of living your life or grieving for your loss. It’s out of your control, so try to concentrate on what you can control.
Hi there,
My husband was diagnosed with PPMS in 1998 but officially 2003 so 26 years in total.
He is now bedbound, has a suprapubic catheter and some swallowing issues. Hardly talks but I keep on until he counts to 10, says the days of the week and tell him if you dont use it you will loose it. It makes him respond.
I gave up work 2 years ago to officially care for him as I knew the gaps between carers would leave him alone. Best thing I did. I can see what is going on and better peace of mind.
He is also at home but under the local Hospice who phone and meet at least once a month.
Everyone’s condition is different even if it has the same name.
Dear Nat I’m sorry. We spoke on Tiktok but you removed me as a friend so I guess you didn’t want to talk anymore. It sucks. There’s no reason Ms progresses this quick it just does. Today I crashed my car I’m 39 35 when it began and diagnosed this year. It happens. It’s genetics and it sucks. My mother had Ms but went undiagnosed. My brother has mild symptoms. A, chap called luke callinan died of it after three years. The ms charities don’t tell you this crap. No one does ppms gets swept under the rug. I’m sorry for your loss and I get why you removed me from tiktok. No one wants to deal with this.
Hi Foxy
I have PPMS but have never been offered any form of treatmant apart from pain killers. What are you receiving so I can ask my MS Nurses about it
Thank you
Liz
I have RRMS and have Tysabri monthly. As I said in my post, I am unsure what treatments are available, but it is always worth a chat with your MS nurse to see if you have any options available to you.
