Advice again please 😫
Hey again 👋🏽
a couple of days ago, I wrote about a scan finding two new lesions on my brain and I asked about the different types of medication.
Thank you so much For your feedback!
But what I'm finding now is I'm becoming very paranoid about the lesions and any new thing I'm feeling. I keep thinking I'm having a relapse. It might be a relapse or it might not be. My problem is for so many years I've been stable so I wasn't expecting this at all. I'm also an overthinker which doesn't help!
I've made notes of anything new that I feel And I know I shouldn't feel let down, because the health service have done as much as they can with the resources that they have, but I do feel let down and as if I can't trust them 😫
The MS team takes so long getting back to you and they don't have the knowledge to questions that patients have. And it's unfortunate that we have to over exaggerate symptoms to be heard 😢
Okay rant finished
On top of all that maybe you need a new ms team. Neurologist/ Nurse. I was on betaseron for 15 years, after divorce almost 6 years ago. I flew to Las Vegas to roommate with my cousin in Henderson Nevada. I knew betaseron was ending my ms nurse in Montana. Already stated id have to quit for my kidneys. So I meet highly recommended Neurologist in Las Vegas. As Im talking I could tell he wasnt listening. So before he started his plan, I asked him can you repeat back to me. What I just said so I know we're on the same level. Going after these goals at that time it was ms year 21. So he sat there for 4 minutes and everything thst came from him absolutely had nothing to do with what I said. So I kindly told him that's not the kinda team, I want to be in.
Ok I'll try and keep my recommendations as brief as I can: Yes make the notes but then put the notepad away at the back of a draw and only get it out if you have a consultation or new symptoms to record. When my ms was unstable I felt very paranoid too about every little symptom that occurred. Now 10 years later I realized it was just, well, paranoia, and I imagine in a few years time you'll look back and think the same. Yes you have had a recent relapse (new lesions) but most people unmedicated with RMS have say one a year or two if they're unlucky. Because you have a drug well into your system I can't see you relapsing again soon so you probably have a few months to play with to get onto a new drug using your NHS team. I wouldn't feel let down because the approach my consultant took was if Tecfidera is working then there's no need to change it so your consultant has acted like others (yeah I know Aaron Boster is better). I can give you some contacts for nurses at the MS Society who can help with any questions you have in the absence of your hospital's nurse.