My daughter was diagnosed just over a year ago with relapsing and remitting MS. She is a single parent with a toddler. I try to help as much as I can and be strong for her. She has had one cycle of treatment with lemtrada. Next one due soon. She has brain stem lesions but on previous scan no spinal lesions detected. Have been told a new MRI now requested to confirm new spinal lesions. I am doing my best to be positive and upbeat but I am devastated for her. Natalizumab is now a possible treatment which is described as for severe relapsing remitting. This all seems to be proceeding so fast it is hard for me to cope with , let alone for her. I do not know how to be in order to help her as best I can. Any advice?
tysabri (natalizumab) is highly rated but lemtrada is even more so.
her neuro is the person with the knowledge so has she any appointments soon?
maybe if you describe her problems we may be able to suggest ways around them.
for example continence is a frequent issue that can be helped by the bladder and bowel clinic.
we all find ways around the issues we face rather than finding ways to remove them.
it sounds as though she is in a prolonged relapse in which case she just has to wait it out.
steroids help but she will be having these with her lemtrada infusions.
i understand your worry because your child’s health is immensely precious to you.
my son’s condition is bad anxiety and although i have ms, i’d love to have it for him rather than see him suffer.
encourage your daughter to enjoy the things she can still do rather than fret about the things she cannot do.
playing with her child is precious and lots of cuddles too.
hopefully the lemtrada will enable her to do much more.
also look after yourself because if your own health suffers you will be able to do a lot less for her.
Neurology consultant who is very experienced with MS saw us yesterday and at that meeting suggested she may need to change to natalizumab and has requested JC virus test along with MRI. With the annual lemtrada immunity is compromised post infusion and took several months to recover. How does this work for infusion once a month?
She does have quite a positive outlook, having still managed to work except for the 10 days post infusion. Luckily she does not need to use public transport to get to work and works in a small company so the infection risk is low when her immunity is compromised.
We are trying to focus on what she can do rather than the difficulties.
From what I’ve learned. My is caused from the bodies own immune system, attacking itself. The nerve coatings get a form of decay that causes misfiring of the electrical impulses.
Personally I’ve chosen to help my own bodies immune system to fight & correct itself.
Due to there being no cure & the medications offered making my PPMS diagnosis, much worse.
A change in diet, exercise & avoiding stress has been working far better than what I’ve been advised.
Vitamin D3, B12 & eating plenty of greens. Omega 3 or fish, cod liver oil, Olive oil & walnuts for minerals.
The best off all. A lovely dish of Mushrooms with garlic & cheese, with tomatoes.
It’s classed as an Holistic treatment & way of life. Pot luck medications aren’t as much fun & safety. Often causing a drastic decline, in a condition the so called experts don’t even understand. Let your daughter become the controller & don’t rely on strangers. Your daughter will know what’s best. A diagnosis does not mean, letting others use her as a test subject, to promote their drugs.
My GP said I had an head ache & after seeing how bad the scaring had become from an MRI I was diagnosed with PPMS & told I’d had it for 10 years or more. When I think of all the medications I’d been prescribed in that time. I was shocked. They don’t know & I’ll be choosing from now on.
Improve the bodies immune system & enjoy a better quality of life. Avoid idiots! They cause problems.