Look at this! I didn’t wait another month before writing a blog post! I just wish I had some better news to share, but I at least have a lot of news. This last week, I went to a neuromuscular specialist that was 2.5 hours away after a referral from a rheumatologist. The plan was that they were going to run some tests based on what I had already had done. The whole process of even getting an appointment was a pain because I needed a referral and I needed a doctor to complete a packet of paperwork to go along with it. They also needed to forward all of my current records for review. So once I was accepted, I thought I must have finally found the right place.
Arrival
My wife and I drove up to the town the day before so we didn’t have to deal with all of the Monday morning rush hour traffic and stayed in a hotel close to the doctor’s office. That made getting there early easy. Right away, the office started to worry me as the chairs in the waiting room were some of the worst I have ever seen in a doctor’s office. They were the awkward kind that are too tall so your feet don’t touch the floor fully, and the back was super short so you can’t really lean back either. For a place that helps people with nerve problems, it doesn’t make any sense to me. Everyone in the waiting room was hunched over in pain, my wife and I included. We got there about 15-20 minutes early, and they were about 15 or so minutes late before they even took me back, but they were very busy and overbooked from what I could tell. The bad news was that they said the back room I was going to was very tiny so my wife wouldn’t be able to go back with me… another bad sign.
The Back Room
They took me to the back room where the nurse asked rapid-fire questions, going over a bunch of the information I had sent them—even things I had just filled out on the pre-check-in paperwork. I don’t know how they expect someone who is in pain to keep all that info straight, but luckily I had a bunch of mine already typed out and saved on my phone. I still found it very unpleasant to go back over everything that I had already sent them. It also frustrated me that the nurse was just going so fast as he went over one question after another. We finally got over the question part, and he said the doctor would be right in, then left. The room was just big enough for the bed, which was touching three walls, a chair for the doctor, and the machine they use for the tests. I got to hang out there alone until it was 45 minutes past my appointment time, awkwardly sitting on the bed.
The Doctor
Finally, the doctor walks in and quickly bashes my dreams of getting some answers, as the first thing he says is, “Why are you here?” I was like, “Um, because a doctor referred me here?” He then said, “Well, you have already done this test twice though. It won’t change, so why did they want you to do it again?”
Oh my gosh… I was so frustrated. So it turned out that the rheumatologist, who also did a bad job of looking over my paperwork, had specifically requested a couple of tests that I had already done twice. And to make things worse, at this point I had done them on each side of my body and on my face, so they didn’t have anywhere else to test. The doctor said that once you get a result, it isn’t going to change, so after looking over my data (which is what took him so long to come into the room), he agreed with the diagnosis from the neurologist, which is that I have idiopathic small fiber neuropathy.
The whole point of going to the rheumatologist and then to this specialist is to remove the idiopathic from the diagnosis so that we can get to a treatment for whatever is happening to me. I couldn’t believe that both doctor’s offices had screwed up so badly. The doctor said that the only other test he would recommend was to do a biopsy of my skin to see if that provided any new information. Luckily, I knew all about the test he was talking about because my other neurologist had already talked to me about it. We had decided not to do it at the time because it doesn’t change the diagnosis or treatment, just provides more information about how bad the damage is. At this point though, I had already spent the time to drive up there and had taken a day off work, so I told them that I wanted to do it.
The Test
For the test, the doctor actually left because the nurse practitioner of the office actually does the biopsies. The good news there is I got to spend about 30 minutes talking to her about my symptoms and getting her opinion about what is going on as well. She agreed with what we have done so far, and she also said they could mail me a DNA test that would check to see what kind of small fiber neuropathy I would be more likely to develop. It won’t be a sure thing, but we could get lucky, so I said that it was worth a shot. So maybe the trip won’t be a total waste of time. Oh and get this, the biopsy results? They won’t come back until the last week of December! Or that is when the follow-up is. Maybe they will show up in the portal and I can just cancel the virtual follow-up with that office and leave them a long review. I mainly just want to tell them that they should buy new chairs.