Undiagnosed and Frustrated
Urgh where to start. I have been on this road for way too long without being officially diagnosed. I feel like I have zero support and without a diagnosis and it feels like nobody believes me.
I currently take a plethora of pills trying to keep all my symptoms in check - things like fatigue, tingling, burning sensations, frequent urination, etc,
As far as the doctors go, below are some of the more recent comments:
- this looks like MS
- You have an autoimmune disease but we aren't sure which one
- It's MS but we aren't going to treat you because we are saving the treatments for those who really need it as they are expensive.
I feel like I am trying to navigate this blindly. I have no idea how to manage every day symptoms and absolutely no help from doctors or specialists. At this time my way of coping is plowing thru everything until I physically just can't do it anymore - I'm guessing this isn't the best approach.
Any tips or tricks would be appreciated.
K.
I am sorry for what you are experiencing. I'm on a similar path, undiagnosed and struggling.
It's hard. And it sucks.
Personally, I have received a diagnosis of fibromyalgia in my early 20s, around the time the big symptoms started. Then a lot of platitudes of 'it must be the fibromyalgia' as things progressed. And then 'it could be MS, but there's not enough evidence'. And now, functional neurological disorder. Twenty years and still no treatment, no meds, multiple doctors, no validation.
I feel your struggle. And I hope that things change for you, that you make some headway with your doctors.
Sending you much love and respect 💜 💜
