January 10th, 2018 the paperwork was written up by my neurologist and the request was made, we are headed to DUKE Medical.
A couple of things:
1. This Is Not A Bad Thing:
We are going to get several of our questioned answered. Hopefully qualify to get on their “Active Patient List” which would allow me to be considered for trial treatments and research.
2. I Am In A Better Situation Than Most Myasthenics Headed To DUKE:
I tested positive in blood-work, therefore so much workup was done locally, my time with the specialist will be extremely targeted and very efficient (hopefully) .
3. No, I Do Not Know When I am Going:
Once the paperwork is sent out, it could be a week or months before I get a phone call from them. Especially since I am currently undergoing one of the more major treatments.
4. I Cut My Hair!
Due to my current treatment, my hair is starting to drastically thin and fall out. It should not get super patchy, from my understanding, and I will not lose it completely, but I will see a noticeable difference. This week I believe, has been the hardest as it is starting to come out by the handfuls. So I decided to take control and cut off almost 6 inches !!! I actually really like. I am still adjusting.