I believe this disease is hereditary. My daughter, who looks a great deal like me, has seen my Neuro. There’s something showing on the MRI. At first it was said to be from a nasty life threatening convulsion when she was 2yrs 6mnths.
Fortunately, the Neuro has agreed to keep regular checks due to my PPMS symptoms starting age 47 but not diagnosed until I was 58.
My daughter will be 48 in October and her symptoms are very similar. Thank goodness it is suspected as more than coincidence. She’s had 1 more review since but not an MRI.
Rod Stewart knows of MS, he calls it a cruel, cruel disease. It affected his Mum and one of his sisters.
currently 3 of us in our family all have MS, and now a fourth is being tested for it after developing worrying symptoms. All are brother / sister / close cousin related. We have all sat down and discussed this for hours and hours, and can go back even further and remember at least another 2 relatives who have now passed away that had mobility/sensory problems that was never actually looked into or never had a diagnosis due to it being many years ago when the technology/testing of today was not around… We are all under the same MS clinic and consultants, yet even though we’ve all mentioned the family link nothing is taken seriously. Like Chrissie52 we all truly believe its a family/gene related disease, even if the idea is being dismissed by consultants.
I also believe there is a family link, my mother has PPMS, she started with sight issues when she was 50, she never has had any treatments or dmds, she’s now 81, totally disabled, blind and virtually deaf. I had leg issues when I was 35 and diagnosed with RRMS, then sight issues when I was 45 and started on dmds then, 5 years ago. I’m sure my mum has cousins with MS but I’ve never told my mum that I have it as it would break her heart so I don’t really discuss it with her plus have meaningful conversations with her isn’t easy but I spoke to her cousin once at a family function and he had it and his father also had had it. Thats too much of a consequence for their not to be a link in my view. I was never blessed with children so maybe that was a blessing in disguise.
This is the problem - or at least part of it. Many families are riddled with MS, and others with autoimmune diseases generally. Yet some people are alone in having MS and also in autoimmunity.
So while there’s clearly a genetic link, it’s not as simple as that. If people can be the only one in their family with MS, you can’t say it’s hereditary. Yet there are families like jactacs where there are many cases.
Confusing, difficult, it’s no wonder there’s no cure, no one knows what causes it. Until that can be worked out, a cure is just a unicorn, ie mythical.
Unfortunately I don’t think there will ever be a cure provided to us from the medical world. They have no interest in curing diseases as there’s no money in this. Just imagine a future where there was a cure, that would mean no more drugs are needed , less doctors & professionals would be needed, and in general the medical establishment would not be making any significant profit.
The money lies in creating pharmaceutical drugs to manage symptoms . That’s my two pence on the matter !
M.S of any type is not necessarily hereditary, but my understanding is there can be a rogue gene passed between relatives, leading to MS.
My daughter first saw a locum Neurologist. When telling him of her symptoms, (mirroring some of mine at that age), he virtually dismissed her, and told her the problems she has will not be MS as it is not hereditary. She then asked him to write a letter to the GP, categorically stating MS is not hereditary, and to confirm his own non evidenced opinion of Not MS.
He refused but arranged an MRI. Meanwhile, I spoke to my own MS Nurse who then arranged an appt with my Neurologist.
When my daughter saw him, he has since monitored her every 12 months.
We await her next MRI to see if any changes. She hasn’t had any relapses but shows deterioration in cognition, less stability on standing, worse vision etc.
We’re still praying it’s not MS, but a helluvalot of coincidences.
Now that Ocrevus is approved for around a third of PPMS cases, there’s hope towards more research for all types of MS to stop further damage.
I doubt the next few years will provide a cure, but there is more good results from research than ever before. So more hope.I
there are too many people with m.s. who have a relative - some with close relatives who have m.s. -for there not to be a hereditary element involved. The medics seem reluctant for whatever reason to consider this likely possibility.
Yep, I totally agree. The ‘boffins’ are way too cautious to actually make a decision. Having said that, it’s not nice for us, her parents, to watch our daughter cope with so many of my early symptoms, and know it can only get worse. Chrissie x