I started this journey in 2010 in my early 20s, when I noticed that I was having involuntary hand movements and numbness/tingling. Didn't take the visual disturbances as a symptom until the first neurologist asked about it. I had an MRI without contrast in 2010, nothing abnormal to note but no follow up with contrast. The doctor said he suspected early stage MS but without any evidence on my tests his recommendation was to follow up if I noticed any new or worsening symptoms. How vague.
Fast forward to December 2023. Suddenly hit with this feeling in my legs, like I was on a rocking boat or trying to walk down the aisle on a plane in turbulence. And it didn't go away. Since then, more and more symptoms are emerging, and looking back I recognize so many signs that I missed.
Now I'm waiting for my MRI, of course they are so booked that the first available appointment was three months out, and I have one month to go. It's frustrating. And I really want someone that I can talk to. I don't want to burden the people in my life without having an answer, and I feel lost at sea. My current neurologist said he suspects migraine disorder, without me experiencing migraine, headaches, auras, or any of the other classic symptoms other than visual issues.
I feel like I'm just venting at this point, but it's so important to have a safe place to share and speak freely about our experiences.
Hopefully the MRI next month will help give some definitive information. All I can do is keep recording my experiences and stay positive.