This last month has been fairly uneventful, physical-health wise, up until this past week. Mental-health wise it has been a rough month, honestly. The medication I was put on for MCAS didn’t work out. I gave it two and a half weeks of trialing it just at night since it made me so sleepy, and the sleepiness just never got better - and I’d wake up multiple times a night with severe stomach pain. I let my GI doctor know it wasn’t working out and he agreed for me to stop it. My GI repeatedly called my cardiologist to try to get my dehydration handled, but my cardiologist wouldn’t return the calls so up until now this still hasn’t been handled - keep reading for some good news though!

I followed up with my neurologist (well his NP) for the first time since getting the lumbar puncture on April. They let me know that they didn’t get enough fluids to get proper results on if I have MS or not (which I was already aware of) and decided that we’re going to get another brain MRI to check on the lesion, and they’re also going to do a blood test on me called AVISE which will tell them more information on what I may have going on. They may want to do another lumbar puncture after that, so we’ll see. I’m waiting for insurance approval to schedule both of these. 

Today I had an appointment with a new cardiologist who is more familiar with treating POTS. When I tell you this is the best doctor I have seen so far, I am not exaggerating! I went in prepared with all my test results, notes from my doctors, etc. and he looked at everything and thanked me for being so organized, and without hesitation said he’s sending me to a vascular surgeon to get a port put in and he wants me to get fluids twice a week! He’s going to try to get home health to do it, but if insurance won’t cover that he’s going to find me an infusion center here that will. 

As of that weren’t enough, he asked what medication I was on for MCAS and I told him what I had trialed. He immediately said that medication is more sedating and he wants to put me on the one I wanted in the first place! So he prescribed me that today as well. This is another medication that has to be compounded, so insurance unfortunately doesn’t cover it. Hopefully it will not be too expensive. 

He also wants to put me on a medication for POTS that’s actually used in heart failure patients (but has been used to treat POTS for the last several years and has done extremely well), but unfortunately it’s only manufactured in Canada. Because of the current tariffs, the price is way too high to be able to access it affordably for now. However, there is a pharmacy in the US working towards FDA approval to use it for POTS and if that goes through I’ll be able to get on it (or if the tariffs get lowered first). 

I am so thankful for answered prayers that I finally have a doctor who listens, understands, and actually takes action to help me! This appointment today just may have been the major step in me being able to get my life back, and I am so beyond grateful! 

Going forward I have a GI appointment next week with a different GI doctor because my GI doctor is out on medical leave for a few months. We’ll be working to figure out what this irritation around my tube is and talk about when my tube will be replaced (it has to be replaced every 3-6 months). I’m hoping to be able to get a “low profile” tube that isn’t this dangler I currently have. I honestly don’t even know why they make these - they always have to be secured to your stomach and they’re so heavy and painful and make wearing normal clothes difficult. I’ll also be asking about the test for gastroparesis to see if the plan is for me to do that test or not yet. 

I’m a short summary of what you can pray for:

Thank you for your continued prayers in my health journey! I’ll update once I get any new information.