or How to accidentally terrify a nurse, discover epi doesn’t stop you from bleeding, and set off a CRPS flare all in less than 3 hours.
bout a month ago we hauled me off to my twice delayed nerve conduction test and Small Fiber Neuropathy Biopsy at my newest neurologist, (Also probably the most pleasant of ALL the neurologists I’ve had to encounter and the least jerk like). We pre-medicated me as usual because the biopsy involved lidocaine injections and that’s an actual issue for me. I don;t usually tolerate it very well and honestly it barely works. My dentist actually discovered that he had to use Provocaine or Prilocaine (old school versions) and numb my nerve root then wait for 40 minutes and then squeeze all dental work in as fast as possible because it fades fast in me.
Anyway, we show up in the tiny office and explain that, trust us, they want my mom back there with me. No nurse wants to babysit a fainting nightmare like me, who had exactly ZERO sleep prior to this early AM appt, and it wasn’t beta blocker time yet so we knew my blood pressure and heart were going to be chaotic
It should be no surprise to anyone that we barely made it into the room before my sitting in a wheelchair ass promptly POTS fainted onto my mom. Except we didn’t get to explain to the nurse what to expect. So OUT OF THE ROOM SHE RUNS SCREAMING for help. Now, my POTS faints are like these fade outs to gray. I can usually hold some muscle control and I can still hear or see if my eyes get stuck open). Anyway, in come 3 nurses and probably an NP to take my BP and heart rate, it’s sky high and my mom has to do the abridged, “this is every day for us, don’t worry, let’s lay her down and I know when shes going”. Fun fact, my blood pressure did NOT go down for a while…Or my heart rate.
So eventually the Nerve conduction lady comes. She factual and a bit short but does her job well. In case you never get one of these tests (and I hope you don’t), here’s the short version of how it works. They stick electrode stickies at your nerve ends then take a shocker and shock your nerves and measure if it shows up at the electrodes and how fast. It’s also able to measure if there is damage coming from the spinal cord to your peripheral limbs but NOT any central nerves or nerves into the internal organs (where we suspect I have some damage). Then move them around some and repeat. She only did my left leg. And here’s the thing I wasn’t expecting, IT HURTS. It’s deep, strong, and like getting punched hard and burned as they increase the shock. Some of it was like getting laser hair removal on your face but others were way worse. Low and behold, for the next week I was having CRPS flares and it felts like electricity and pain running through my leg over and over again. But those results came back as normal. Which is both good and bad. Good because it means there isn’t spinal cord based damage and nothing in the big nerves. The bad news is the biopsy had to happen.
Luckily I had my actual Neurologist come do it for me. Dude is an artist with that they have to do. He wanted me to be seen at Vanderbilt because my case is outside of his specialty and my cardiologist should review my results from his tests since he asked for them originally. But he also agreed to a brain MRI (no contrast so it’s basically useless unless I have some kind of physical problem up there- we need it with contrast but that means steroids and Iv Valium on standby for my reaction) for my inverted colors, weird vision, and other very odd symptoms, especially the pseudo-bublar affect style symptoms [hysterical laughter or crying you can’t control at incorrect times- it’s usually a brain injury problem but it can also appear with a few weird cases of other things and my Psychiatrist is confident it’s not some magical manifestation of a brand new psych disorder soooooo] and an AAG blood test [autoimmune autonomic ganglionopathy- a rare sub type of dysautonomia that would explain a heck of a lot].
Okay so on to the biopsy, which I though would be my biggest issue. The inject lidocaine (with epi thankfully) into your thigh and your lower leg about 6 inches above the ankle on the side. It burns like heck. Then they literally apple-core your nerve. Like a tiny circle cutter the digs in deep. Of course it takes forever because apparently I have tough skin… By the time we got to my thigh I could feel some of it but didn’t want to risk more lidocaine. The worst part is mom actually had to watch some of it and this is NOT her forte. Then they tweezer out the samples and ship them off. The epi did NOT prevent or stop me bleeding like it was supposed to. Surprise Surprise right?
And then we are done. 2 hours total later and I’m being wheeled back to the car and off to home. I had to spend the next week recovering that left leg being a bitch to me. It;s healing fabulously for such a deep cut but apparently that’s the silver lining of my conditions.
We got the test results yesterday finally during my cardiology appointment (and yes there’s a frustrating update there too). It’s Small Fiber Neuropathy, which is basically like permanent CRPS of sorts but with loss of sensation and appropriate control. The positive? There are some theories on treatment for improvement like IVIG. The negative? It’s not something you can put back in a box like I did with CRPS twice [by some miracle]. And it’s pretty bad. My lower leg scores (how responsive they are) were very low and even my thigh was just barely in the low normal range. Now this is the sting side so that does factor in, but both legs have issues and my arms are starting to as well. Despite there not being much medically that could help, we are going to do every single alternative method of massage, movement and whatever we can possibly do to help me. It also means we can hope that when my Medicare insurance starts they’ll cover me doing the VERY overpriced IVIG.
In other news along with that, my cardiologist NP is amazing. She faxed everything to Vanderbilt’s Autonomic Function center to try and help me get in. And they DID accept me. But bumped me from October to next February due to them wanting not just an EKG, but a Tilt Table test (my nightmare), and now we hope a meeting with a neurologist my cardiologist knows and has recommended I see as well. The biggest concern I now have to figure out is how we safely prep me for that tilt test because it’s very stressful and nausea doesn’t mix with it well. We also have to stop beta blockers for who knows how long. Our current plan is to find out the time frame, appeal for neurologist appointment as well, and get me up there before we have to decrease or change any meds so we’ve got their hospital there and can just try and get me admitted for my safety.
But all in all, we’ve got more information slowly coming in. it;s not changing anything yet, but at least we know.
Stay strong my friends.
Life On Fire 