2nd Neurology Appointment & Next Steps

So when I went to see my neurologist on Tuesday, she basically said that they were happy with their diagnoses of migraines and didn’t want to investigate further. 

For my hand/arm numbness they said the nerve testing showed that there were no pinched nerves in my elbows (imagine that!) but that there could still be nerve damage that just isn’t showing up on the testing. They recommend I sleep with knee pads on my elbows so that I’m not putting pressure on my elbows when I sleep.

They still said that my lower back pain and urination issues were separate from my neurological issues and that I probably have an overactive bladder. 

My vision problems, twitching, and everything else that is going on they see as symptoms of migraines because they said even though it is uncommon, people with migraines can still exhibit symptoms such as dizziness and everything else even when not experiencing a headache. 

When I asked about why they don’t think Chiari could be the culprit they had to look back through my chart to even see why I was bringing it up. Then, they said, “Oh, it’s only 4mm. There ya go, that’s why. It’s not even big enough to cause those symptoms.”

At that point I wrote them off and just nodded the rest of the time because I knew I was not interested in anything else they had to say. Even if Chiari is not what is causing everything, the fact that they said that 4mm couldn’t cause symptoms shows their lack of knowledge on the subject - and worse, their lack of curiosity. I know for a fact, as does everyone else who knows anything about Chiari, that the number of mm doesn’t have anything to do with symptoms or their severity.

People with 3mm sometimes have symptoms worse than mine and some people have no symptoms at all with 8-9mm herniation. What bothers me is that they blew it off each time I brought it up. 

After I left the neurologists’ office I went straight to my bladder study appointment. A bladder study is where you get all hooked up to a computer through wires going all up in your business so that the sensors can report everything going on when your bladder fills and empties. 

Long story short, the study showed that my bladder is normal and that there is a neurological issues causes my frequent and random urination, etc. 

Proof that there is something going on and that this is all connected.

Next steps: I will request certain imaging from my primary and request her to refer me to multiple other neurologists and specialists in both Jacksonville and GA.