Hi all, I'm a 21 year old female with a long list of health problems and no answers. First of all, my grandmother was diagnosed with MS, and my aunt and mother have similar problems as well, so it runs in the family.
For at least 5 years, my condition has been slowly deteriorating. I had tests done on my heart, lots and lots and lots of bloodwork (including for lupus), and a CT scan, and everything always comes up normal. I recently started seeing a neurologist, and told him all of my symptoms. I have difficulty walking, dizziness, fatigue, memory problems, poor balance and coordination, shortness of breath with little exertion, sensitivity to heat, twitches/spasms, and numbness, weakness, and pain in a variety of places. One significant incident I had last year was when I woke up and the entire left side of my body was numb or in pain, and I was barely able to move. Months later, I found myself unable to walk, I was extremely weak, my hands were moving off from where I intended them to, my vision was blurry, and my words were slow and slurred and incomplete. My experience with my grandmother and my own personal research pointed me towards MS, or something very similar.
My neurologist ordered a VER/VEP (which was normal) and an MRI of my head and neck. Nothing came up except for a small white dot in my spine. It's 1.5mm big, and he said it was too small to be symptomatic. He was totally lost on what it could be after just that, and I don't understand why he didn't think to look for other things that could be causing my symptoms. Instead, he focused solely on the fact that I have an abnormal gait and weak legs, and had me bend over to check for scoliosis. He found a lipoma on my back (which has been there since 2014) and immediately started ordering tests for diastomyelia. He said several times that it must have been there since I was born, and that "it's been there as long as you can remember, right?" But that's wrong. It's only been there for a few years, and I asked my mother and grandmother who both said I wasn't born with it. There was never a bump on my back. He didn't listen though, and has ordered a new MRI of my spine.
The thing is, I'm not convinced that it's not MS, and I'm absolutely certain it's not diastomyelia. For one thing, it doesn't cover over half of the symptoms I'm experiencing. My next MRI has been scheduled for this Saturday, and I'm supposed to have a follow-up with him after, but I have very little money left and no ability to work. I don't want to waste my time and savings. What can or should I do? I want to talk to him again, I don't want him to give up on MS or not even consider other disorders that may look like it.