← Return to Living with Neuropathy - Welcome to the group
DiscussionLiving with Neuropathy - Welcome to the group
Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)Comment receiving replies
Replies to "Hello @jessamyn, Welcome to Mayo Clinic Connect. I know it must extremely difficult being an only..."
Thank you for this. She hasn't had much of a diagnosis besides fibromyalgia. she hasn't wanted to get a neuropathy test because she feels like it might trigger more neuropathy. She has a primary care doctor and we had been using a medical advocate which I think I might look into doing again. They have also been discussing getting her some palliative care even though she is not dying. This seems like a very helpful group. I also had been going to a caretaker support group for a while before COVID, but didn't find very many other people who had parents as young as my mom. She is only 66! She has had pain since I was 8 and she got a Traumatic Brain Injury and everything kind of spiraled down hilll after that, but she has been able to manage her pain until this past year when it became neuropathic. She got into the SCIPP program at Stanford, but decided she wasn't interested in going because it wasn't focused on diagnostics, mostly just on managing pain meds, but I am not so sure that we shouldn't just have her go there for a week because they have a psychiatrist and PT and NP.... Thanks for reading!