While I wasn't very happy about the diagnosis of Fibromuscular Dysplasia, it matched my symptoms across the board and made sense. It felt relieving to have an answer and to finally be able to.... ya know, STOP LOOKING!.... And start trying to come up with a plan. As mentioned in my last post, my brain MRA was completely normal, so although my CTA showed beading in many other organs, there was nothing significant.... in the places that pose a danger (and my heart was included on the scan) there was nothing at all. The stenosis was really mild and being able to see the scans myself and have the Vascular doctor walk me through each one was helpful. But what he determined is that this is a case of Fibromuscular Dysplasia he usually finds by accident when looking for something else (this is why he thinks it's actually common, but not commonly diagnosed... at least that was my understanding..? Don’t quote me!). So ultimately, we barely talked about FMD or got to any of my questions about training with FMD because he does not think it is significant enough to be causing the claudication so, instead we talked about his differential... which felt a little like an episode of House minus the grumpy doctor. I don’t know if it was the remote format or the doctors personality, but I felt very much like a copilot here instead of just a passenger and that was nice.
This was my first remote doctors appointment, and I've gotta say I liked it more than I thought I would. I got a lot of time with the actual doctor which was nice, and he was only 5 minutes or so behind schedule. I like when a doctor can actually touch and listen to and see ME.... but with a CTA of my chest down and an MRA of my neck up.... He's seen more of me than anyone else! ;) I also made sure to sit at my computer with my running medal display behind me... not to be arrogant or show off... but to remind him how *my* blood flows and what *my* heart rate is, and what *my* expectation of optimal is....n=1!!! He did notice. He said "you are trying to intimidate me with your medals." and I said "is it working?" Then he told me a quick story about his run on the River today, which made me feel good. Runners know what’s up.
Ultimately he determined that the doppler tests and ABI tests I previously had done for the Popliteal Artery Entrapment were done based on the norm. He is not surprised that the reading they got from me was normal because it might not be *my* normal... so his feeling is that it could be a false negative because my fitness level is not the norm (Even though right now I can't run to save my soul and relate more to people just trying to maintain a healthy image than ever before!). That has been my thought all along. How can they just determine that I’m fine based on a scale they’ve developed with people who don’t love their lives like I do abs don’t have a vO2max of 65 (and don’t even know what vO2max is)... so they are essentially scheduling all of that again. He does not feel like Popliteal Artery Entrapment Syndrome (PAES) is off the table and also doesn't feel like Chronic Exertional Compartment Syndrome (CECS) is off the table, but he doesn't think it is either of those things, just that we haven’t been thorough enough with testing. He suspects that maybe there is an injury or a dissection in one of the arteries due to the turbulence heard. I don’t totally understand, but it sounds like there are 3 layers of the arteries, and if an inner layer were injured, the CTA won’t show it... so I'm redoing the doppler test with longer harder running to see if I can get a positive that way first, (He literally told me to start running again to prep for this so that I become symptomatic quicker... so much for never running again!). Then I will be getting an ultrasound/camera in my arteries, to hopefully find out what’s going on. If all else fails I'm going to be getting the Compartment Stryker Test done again since I did get a positive with that. ....
I'll be really happy to just shove a camera up my arteries, because that is the only test remaining to my knowledge to rule out PAES, because I've been so convinced it is this all along, I’d really like to complete that path. There’s a type called Functional PAES.... and from my understanding it’s harder to find because even 60 seconds rest between exercise and the test can make the test negative. In terms of the dissection... that seems to explain some of the very slight beading of my arteries...? Maybe...? I don’t know-I’m new to this vascular thing... We'll see! But... ugh... here we go again!
So I guess all this and last post to say I barely have a rare disease that maybe isn't actually rare and that most likely wont effect my life the way we initially thought, but we still don't know that for sure... And we still don't know why my calf is bothering me the way it has been, which sucks... but on the plus side, at least breaking 3 hours is back on the table as a goal, and if I figure this out there is still hope for me to run fast.... because as of right now there is no evidence that I need to be concerned as much about my blood pressure ... but the doctor said "just put a pin in hard running and lifting for now until we are sure"
Yeah, I'm confused.... but the folks at Mass General seem committed to running every test to get to the bottom of this. Good thing I gif my life insurance already, because tests of this nature don’t look so good!
Welcome to my blog! I've been blogging for a long time on various platforms. My intention has never been to reach the masses, but rather to give myself a chance to reflect and journal. I feel it at least challenges me to be somewhat coherent, however you can expect ramblings and grammatical incorrectness here!
I've recently been diagnosed with CECS and fPAES and had it treated with BOTOX of all things... So I suspect to see more and more people looking for answers with that in the future and hope to continue blogging so there will be easy to access follow-ups as that was helpful for me.
NOTE: Apologies that some of the pictures incorrectly load sometimes. I try to keep up with the glitches, but can't always! Hope it doesn't impact the blog experience for all the PAES visitors.