New here - father of a recently diagnosed teenager
Hello everyone, a worried father here.
I'm joining this community not for myself, but for my 17-year-old daughter, who was recently diagnosed with MS.
Her MRI showed multiple lesions in different locations, with evidence of lesions occurring at different times. Needless to say, receiving this diagnosis has been quite overwhelming for our family.
I've already spent quite some time researching MS and its available treatments, trying to understand the different disease-modifying therapies, their potential benefits, and what the future might hold. Her neurologist has started her on treatment, but naturally, as a father, I'm trying to learn as much as possible about this disease and the options available.
I'm not here to challenge her neurologist or look for miracle cures. I'm simply trying to learn, explore different perspectives, and make sure my daughter has the best possible chance of living a healthy and fulfilling life.
One particular topic I'd like to hear your experiences and opinions about is the Coimbra Protocol. I've come across discussions about high-dose vitamin D and this protocol in the context of MS. I'm curious whether anyone here has seriously investigated it, tried it, or discussed it with their neurologist. What are your thoughts, experiences, or concerns about it?
I'd genuinely appreciate hearing from people living with MS, parents of children with MS, or anyone with relevant experience.
Thank you for welcoming a worried father into your community.
Hello, I was diagnosed at 16 and am now 41 so I can probably relate to how your daughter is feeling. It is a very scary thing to be diagnosed with, but there is light at the end of the tunnel, especially with all the new treatments available. I would also recommend not making any big life decisions at the moment (apart from which DMD to start of course!). She will get through this. Please feel free to message me if I can be of any help at all, hugs to you and family, 🫂
Dx at 27. Im 55, now. RRMS. I was on meds w in the first month of dx. I started on copoxone, then rebif, then ocrevus. As the Medicine gets better, i switch to the newest and what works. Mediter diet. Yoga, swimming,,adult trike bike, stretch daily. Mine is a full time job. Mayo clinic website for accurate info. Its the only place i go for info or ms website. Mayo clinic “living a stress free life” good read. Ms meditation, cds help me, also. Im still walking. Not far. No new damage for years. Its scary yes, but not a death sentence. Your not alone, neither is she. :)