Limbo land
Hi all. I thought I would post. I’ve been stuck in limbo land since a flurry of neuro symptoms starting most noteable in sept 2022. My symptoms started to improve by December 2022. My mri in March 2023 showed multiple small lesions to the periventricular and subcortical areas. All inactive at the time. The impression was “equivocal” for demyelination. I started having symptoms while I was travelling and I have had insane fatigue ever since. My muscles have become stiff and sore. I’m trying to cope with that as well as not having any answers for the past 16 months. I see neurology in March 2024 and I am nervous and also looking forward to it. I’m curious if anyone else has had a similar experience where the MRI was equivocal and later diagnosed with MS? … I had no other abnormal blood tests or autoimmune markers but was also tested long after the symptoms had improved. I feel like my GP dropped the ball even tho she’s the one who was concerned about MS in the first place. She’s kind of left me hanging for the most part. I understand it’s a long wait to see neurology but I feel so defeated. No one in my life understands what I’m going through. I don’t even understand what I’m going through. And it can’t have possibly been all in my head or due to stress or anxiety. Even though I was under alot of stress at the time. I have a repeat MRI again not until august 2024. I am trying to treat myself with compassion and take care of myself. Any advice is appreciated!!
@chatt99 I was in a similar position to you although I live in the UK so I don't know about the Canadian health care system. My first MRI 3 years ago found multiple brain lesions with some in the petriventricular area with demylination. I was diagnosed with "probable MS" and added to my neuros list and given access to an MS nurse after my first scan. I continued to have annual MRIs and consultations. It wasn't until a new lesion was found last year that I was formally diagnosed with MS and started a DMT. It is a stressful and worrying time in limbo land until diagnosis but doctors need to rule other conditions out. My neuro advised me to take 4000 Vit D after my first scan and you should consider this. My Neurologist also prescribed Baclofen for spasms and Notriptyline for neuropathic pain. You should see what your GP or Neuro suggest could possibly help you with any symptoms you have. You're seeing your Neurologist in March and have a MRI in August so you are now on the radar and hopefully will get answers and treatment soon. Do let us know how you get on. Take care
I think if you have lesions on the brain you could get a diagnosis of clinically isolated syndrome (CIS). This could give you access to some DMTs. For a diagnosis of MS lesions need to be seen in the brain and spine in time and space (McDonald criteria for diagnosis). Charities can be a great source of information. Going through diagnosis is tough. All the best.