Doctor’s Update

Today I had a doctor’s appointment to discuss some of the recommendations I received at the NMF conference as well as to talk about some new things that are beginning to crop up. My doc knows me well enough now to realize that it’s sometimes necessary to book two appointment slots just for me. This way we can talk about everything that we need to talk about without making other patients wait. She is always really good at wanting to know how everything is going and chat instead of rushing me out the door like some doctors do.

The most concerning thing that I wanted to go over with her is this tremor that I’ve gotten within the last month or so. It has been getting progressively more prominent and disruptive as time goes on. Sometimes it’s also less of a tremor and more of a difficulty in getting my hands or legs to do what I want them to do. For example, sometimes when I’m driving I have to put noticeably more effort into getting my leg to move from the gas to the breaks then I usually do. Or, sometimes I notice it’s way harder than it normally is to make small movements with my hands/fingers like trying to open a package or to type on the keyboard. When drawing it’s more obvious that I can’t do a smooth straight line anymore without lifting up my hands every few seconds. Hand tremors run in my family on my dad’s side. My dad and his mom both have them as well as some other members of his family. My brother has also recently begun to experience the same thing. Mine differs only in the speed that it’s progressed and the fact that it also effects my legs and feet. My doctor did some quick neurological tests (finger to the nose, different types of hand movements) which didn’t indicate anything too worrisome. She thinks that it’s an essential tremor and the fact that it runs in the family makes it a familial essential tremor. She said to keep an eye on it and that if it continues to become more severe or too disruptive that treatment to minimize the symptoms is an option. She also said that if it’s noticeably bad at the time not to drive. Which isn’t too helpful because it mostly comes on while I’m in the middle of driving. So, that’s that for now. It’s a bummer but not life threatening which is good news. It’ll make some of my hobbies more of a challenge but I’ll work my way around that.

An MRI of my spine has been booked to check on my scoliosis and screen for dural ectasia. I’ve been contemplating asking for an MRI to check for dural ectasia for a few years now because of the link between the condition and headaches.

Tomorrow I go see my optometrist about the drops to restrict my pupil and see if that helps my double vision. I don’t know why but for some reason I think that it’s been suggested before but wasn’t an option. So, I’m not getting my hopes up, I don’t want to be disappointed if I can’t try them.

In august I have a pelvic and abdominal ultrasound. One is to check out a polyp that was found on my gallbladder and to get a better look at my common bile duct because it was a bit dilated. A few other ducts have also been noted to be dilated over the years but personally I’d assume that it can be attributed to my tissue disorder in the same way that a dilated aorta is. They also want to have a look at my abdomen because of the nausea and cramps I’ve been getting daily. Also, in august I have an appointment with a connective tissue specialist.

Now you’re all good and updated. Until tomorrow’s eye appointment anyways. Maybe tomorrow I’ll have good news.

Happy Wednesday.


I am not a doctor and the medical definitions and descriptions featured in this blog post do not and should not replace those of a medical professional. They are merely there to help give an idea of my situation and experiences. If you are in need of medical advice see your doctor.