Primary Care Appointment

I had an appointment last week with my primary care physician (PCP). I had a wonderful PCP when we lived in the most recent town we were in in Illinois, so I was extremely sad to leave him! Thankfully my geneticist used to live in Cincinnati (where we recently moved to) and still has connections here! He was able to give me a recommendation for a PCP who is knowledgeable about Ehler's-Danlos Syndrome (my connective tissue disorder). This doctor was not taking new patients, but since my geneticist referred me to him he was willing to take me on!

I had a few questions for him, so the appointment was timed perfectly. Firstly, I have been taking a muscle relaxer for about 8 months now for the extreme tightness in my neck down into my shoulders.  The muscles that run down from my neck into the top of my shoulders get as hard as rocks (literally, not an exaggeration). This can be caused by many of my conditions (chiari, EDS, and instability) and is extremely uncomfortable for me. When I saw my genetesict last fall he recommended that I start a muscle relaxer called Flexiril to attempt to alleviate some of this tension. This helped a little bit, but every time I saw a new doctor or therapist they still were amazed at the amount of muscle tension that I held in my neck and shoulders. I asked my PCP if I could increase the dosage of the Flexeril, but he said he was not comfortable increasing my dosage. Flexeril can cause electrical changes in your heart and that risk increases as the dosage increases. Instead he recommended that I change to a different muscle relaxer called Baclofen. He started me out on 10 mg once a day and I will increase that dosage to twice a day and then finally three times a day over the course of three weeks. I am currently on 10 mg twice a day and it has helped so much!!! My muscles are not constantly tight and do not feel like rocks! It is so nice to have some of that tension reduced! One note of caution is that my doctor did say that if I had not had my cranial cervical fusion (screws from my skull down to my second cervical vertebrae) that he would absolutely not recommend a muscle relaxer since I am an EDSer. This is because the tightened muscles are actually helping to hold your cranial cervical joint stable and when you relax those muscles the instability that many of us with EDS have gets worse.

I also asked him to check my thyroid and my electrolytes. My thyroid is considered to be borderline hypothyroid, so I like to monitor my levels and make sure they do not tip into the range where I would need to be medicated. My levels were still borderline, so for right now we are good to go! I get my electrolytes checked because a medication I take (florinef) depletes my potassium and thus I need to take prescription potassium. Low or high potassium can cause serious issues with your heart, so it is essential to monitor my levels to make sure we are not over or under supplementing my potassium. Thankfully my electrolyte levels all look good! I was able to take my orders for the blood work down to the cancer center and have the labs drawn through my port. It is incredibly convenient that the cancer center is located in the same office as my PCP because then I do not have to drive to a separate office just to get my labs down.

As I mentioned in my last post that I also was able to get a recommendation for for a doctor who will do the botox injection into a muscle in my stomach (see this blog post for more info on that), so I was incredibly thankful for that! I will see that doctor next week, but I am excited to try the botox inject and see if I get a symptom relief from my gastroparesis. I also got a prescription from the PCP for a brace that my physical therapist recommended that will hopefully help support my spine and improve my neck pain and discomfort. I will write a blog post more on that when I receive the brace and have a chance to try it out!

I believe that those are all of the major this that we discussed at my primary care appointment. I will go back and see my PCP in 3 months. In the mean time I have a few appointments coming up in the next week or so, so I will update on those as they happen. I also had an appointment for my hip so I will write an update on that ASAP. Thanks as always for following along on my journey!