Tumefactive MS

Hi, !

I think it's wonderful (and just like a good mom) to be wanting to learn more about your daughter's diagnosis and how you can support her. From one mom to another, I know that nothing hurts like watching your children hurting and being unable to fix it.

A diagnosis of Tumefactive MS can seem incredibly scary and daunting, but please know that people can live well with this form of MS. It is rare and it is aggressive, but it can be managed. Having a medical team familiar with this form of MS is helpful, as this isn't regular ol' MS.

I also wanted to share some stories from members living with Tumefactive MS. This story is helpful, as the writer is also a nurse and she discusses the details of this form of MS a bit -- https://multiplesclerosis.net/stories/years-years. Here's another story from another community member with Tumefactive MS -- https://multiplesclerosis.net/stories/tumefactive-ms. Also, I can't recommend the National Multiple Sclerosis Society and the Multiple Sclerosis Association of America enough. Each organization has great resources and the NMSS had the MS Navigator program, where you cam communicate with trained individuals that can answer all kinds of questions. There should be someone there that understands Tumefactive MS and the unique challenges the diagnosis can bring. It may be a great resource for your daughter as she adjusts to this diagnosis -- https://www.nationalmssociety.org/resources/get-support/ms-navigator. There are support group options as well, depending on your location. I would definitely encourage her to check out the resources available.

And please know neither of you faces this alone. We are happy to help in any way we can and almost every member of this community has been impacted by MS and can empathize.

Please reach out any time.

Best, Erin, Team Member.

Also, because I am limited in how many links I can post in one comment, here's a link to the MSAA -- https://mymsaa.org/.

Best, Erin, Team Member.

Oh my God that is so sweet for you to reach out! Thank you for the resources. I will definitely check them out! It is scary. I've told numerous people, it doesn't matter if your child is 36 or 3. It's still your child and for them to be in pain of any kind is heartbreaking. It makes it worse when they can't tell you what they're feeling. I would take it on in a second if I could. It's just been frustrating because she's seen numerous neurologists and even though they know about it, nobody has ever dealt with it directly. So we are waiting to talk to a specialist but I'm sure you're familiar on that process and how long and drawn out it is. I just don't want to miss an opportunity to do anything I can to help her. And I don't want her degrading in the process. When she was at the hospital she got another lesion that was only found by MRI. Since she's not actively getting MRIs right now, I don't know if there are any new lesions. I can only go by what she tells me and unfortunately that doesn't really help sometimes as cognitively, she's still confused and everything is "fine" . Again, thank you for reaching out so quickly and for the resources. I will definitely check them out! Dena