We saw Dr. Neilson for a follow-up visit on Friday and it was pretty good… I was a bit anxious to be honest, it was our second time seeing him: the first visit can never fully indicate if the doctor will be awesome, bleh, or horrific. So, this follow-up left us feeling fairly content; that is a very good thing that is not to be taken lightly.
We went over the usual with the following recommendations:
- More PT (with EDS, it is always more PT, there is never ever enough): Yes, it is an answer as far as strengthening the muscles and it is obviously necessary with EDS. But, I just don’t believe it is the WHOLE answer for the bone draining fatigue she is experiencing, which has only worsened although her health has vastly improved. I think it is all ‘they’ (the EDS experts) have to offer us but I know there is more than her needing to be more active to solve her fatigue issues. So, we have a couple (bajillion) PT issues that could be addressed, but the question is, do it at home or at Cincinnati. Home is by far most convenient, but Cincinnati has more expertise. At home, we get a month, then dismissed. At Cincinnati, it would be ongoing, but we would go less.
- Shoe inserts to align her properly and help everything work better: she has some and they hurt, so she doesn’t wear them. Which, for some strange reason causes them to be less than helpful… The Strutz were helpful, but hers got stretched out, so we need to get new ones. He also suggested going to be evaluated at certain shoe stores – some will evaluate your gate and arch and so on and fit you with the perfect shoe. I have written about how horrific shoe shopping is for Em, not sure I want to do it in a high tech way, but, then again, maybe it is the answer!
- He is sending us to Cardiology to work up her autonomic dysfunction: I have mixed feelings about this, but we will go and I will try to keep an open mind. He was suggesting a beta blocker to help her symptoms, but I know that beta blockers can be iffy with mast cell, so we will just play it by ear. (We have been referred to Cardiology previously by the neurologist when she failed her tilt table test a year and a half ago. We didn’t make the appointment and let the referral slide because I just didn’t trust them to know what was going on and to be able to help and not hurt, plus it was at the same time that she started the Diamox, so I wanted to give it a fair chance to work. It would be awesome if we get someone who really knows AUTONOMIC DYSFUNCTION (Not just POTS and the misconceptions that go along with it) and who wants to be a team player but forgive me if I am a wee bit skeptical! I will believe it when I see it…)
- A new Miami J collar: he has given us a prescription for a new one to replace the old one she has had for 2 years. She had taken to wearing it at night and it seemed to help control her headaches, but it has seen better days. The pads are worn thin, which makes it very uncomfortable. We could get a new set of pads, but the velcro fasteners that allow you to adjust the collar for comfort are shot as well, so we just need a new one. He said he doesn’t like to give braces because people rely on them to the point their muscles weaken. (I don’t totally agree with that, but whatever.) When we said she wears it only at night and occasionally on long car rides, he was ok with that.
I chickened out about bringing up mitochondrial disease during the appointment. I am more and more convinced that it is a possibility, but he kept going on about how PT and exercise was the answer for her fatigue and I decided to not go there at the time. I just don’t think her fatigue is the ‘golly, my muscles are working twice as hard as everyone else’s so I am really tired’ variety. I think there is something deeper going on and I am highly skeptical that just pushing through is the answer. But, I decided to fight that fight another day, instead of throwing it out there right now. My plan is to talk to the neurologist PA and start talking about mitochondrial disease – see if I can get him thinking about it. If I can get anyone else considering the possibility, then I will talk to Dr. N next time. The snail’s pace of progress that we are making drives me up the wall, but it is what it is and I don’t think this portion will move fast in any case, so I may as well settle in for the long haul.
In general, though, I am pleased with the outcome. There are a couple issues I disagree with him on, but I disagreed with Dr. T at times as well, so no big deal. (Actually, I don’t know what I would do if there was a doctor I couldn’t disagree with about something!) It is a huge relief to have someone on our side, working with us to get us where we need to go. We see him again in 6 months instead of a year and the appointment is conveniently on a Wednesday instead of a Friday; can’t ask for more than both a decent, involved doctor and convenience!