New Potential Diagnoses, New Medications, and More Tests

The last few weeks have been incredibly hectic. I will say, though, that’s hectic in a good way. After putting up with issues for a while, I’m finally getting them addressed.

photo inside a GI exam room with tan exam table and white pillow against a blue and tan wall

I feel like I’ve already perfected the art of spending time in exam rooms.

Neuro

My migraines have been getting worse again. Unfortunately, our insurance doesn’t want to cover much of my Maxalt. They only want to cover three fills in sixty days. That’s 27-36 pills. When I have to take two to kill a migraine, that’s not enough. It means that, instead of being able to take these pills and move on with my day, I’m still having to try to treat my migraines with other things.

It just doesn’t work.

My neurologist has upped my nortriptyline to three pills at bedtime instead of two. I’m really hoping that it helps. For now, it’s helping me sleep through the night more. I’ll take that!

MCAS

I finally got a response from my allergist/immunologist office. The pee tests I did for MCAS were mostly within normal limits, though one showed higher mast cell activity than the others. Since I’m still having what we think are MCAS symptoms, though, they prescribed me montelukast or Singulair. What it does is block leukotriene D4 from hitting leukotriene receptors. This is especially helpful in the lungs, but also helpful throughout the body.

After a few nights of this, I’m already seeing benefits. The biggest one is that my rashes are not showing up! My face, chest, and arms have been normal looking for a few days. I’m absolutely floored and thrilled.

It does make me wonder if my rashes lately have been more due to MCAS than SJIA. Notably, I haven’t had much of my odd undiagnosed symptoms the last few days, either.

K's hand with three green and white capsules (nortriptyline), one pink pill (etodolac), one white capsule with black writing (Lyrica), and one pink square pill (Montelukast)

Birth control

I opted to get an IUD in order to get off my birth control pill. The extra estrogen could be increasing the frequency of my migraines.

That got put in on Tuesday. The process was incredibly painful and I almost passed out and/or threw up. I’m still kind of processing it but, to be honest, it was traumatic. The strings have, at least, stopped poking my insides.

GI

I also had a GI consult on Thursday. It was a really thorough visit and the NP I saw was incredibly understanding. I was migraining while there and she was very patient with me having a hard time with some words.

After talking more about my history and some of the things going on, she is concerned that I may have a type of IBD instead of IBS. Things like waking up at night to poop and rarely being hungry or only eating three bites of something to feel full are apparently not normal for something like IBS. In order to rule IBD – or another digestive issue – out, there are a few tests we have to run. Next week, I get to collect my poop and bring it to them for testing.

At the end of the month, I’ll have an endoscopy and colonoscopy. It may be able to give us answers or, at the very least, it can rule out something more serious.

Unfortunately, we noticed that my heart rate has been faster for… a while now. Combine that with my lightheadedness and nausea, and the NP is concerned about my heart… which means yet another appointment I’ll have to make.

Funny enough, it’s that issue that I’m focused on… mostly because heart stuff could easily point more towards MCAS or something else. If I’m honest, that’s scary. I’ve spent several days recently contemplating mortality because that’s what I do best. It’s not been great for my mental health.

So many appointments

This has been a collection of a ton of appointments and calls. It means that I’ll have a ton of follow-ups coming up, too.

I’m tired. It’s exhausting to have to stay on top of busy providers, try to get test results, and wait for calls back. People don’t always understand how tiring it is. It’s definitely worse than having a full-time job. Hell, it is a full-time job.

Thankfully, today’s appointment is for our car. It’s nice to be on the caregiver side of things sometimes, even if it’s for an inanimate object.

Hopefully, getting my things addressed will lead to positive results. I just want to feel better physically, mentally, and emotionally.

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