This post has been de-listed
It is no longer included in search results and normal feeds (front page, hot posts, subreddit posts, etc). It remains visible only via the author's post history.
I was diagnosed with Multiple Sclerosis in 2016 but said to have it since 2011. I have not taken medication although am constantly recommended it as I worry the side effects outweigh the benefits.
My problem is my appointments! The doctor will call me 2 weeks ahead of time and ask if I have a quick 10minutes to catch up. Not to prepare for my appointment but to actually replace it. I only have 2 appointments a year and she always ends up getting half of my symptoms and disregarding the others.
I’m so upset and stressed by this. I last had a brain scan in October with changes and my next appointment is in April she called me yesterday afternoon on private number to see if I had a quick 10minutes!! It’s so upsetting what am I speaking about in 10 minutes? I’ve had MS for a very long time and other conditions but yet I know next to nothing about it. Is this normal? I feel like she doesn’t care at all as long as she gets my appointment out of the way or if I suggest starting medication.
You're not stuck with a doctor. If you don't like this one, get another one. You have to fight for yourself in our systems, no matter what. Call your insurance and get a list of covered neurons in your area, do your research, and when you reach out to them, let them know what your health approach is and gauge their reaction. Go without whoever makes you most comfortable.
While I don't recommend avoiding DMTs (I was DXd in 2017, they said it looked like I'd had it since a decade before, so we're in a similar boat), I do recommend getting more specific care. If you're trying to manage a progressive disease sans proven medication, you're going to need to work with a functional medicine doctor as well as your PCP and neuro. Looking up Nicole Apelian and following some of her recommendations could help you as well. She's an herbalist and survivalist with PPMS, and very inspiring. If you want even a chance of doing well with MS while still consistently getting lesions, you're going to have to get REALLY CRUNCHY. And even then, there's no guarantee.
Subreddit
Post Details
- Posted
- 10 months ago
- Reddit URL
- View post on reddit.com
- External URL
- reddit.com/r/MultipleScl...
You have to ask for those things. You'll get the minimum care unless you advocate for yourself. When you go into appointments you need to be the one to ask questions, ask for referrals, say what you need, and ensure you get it..