kirsten and the quest for a diagnosis Archives

New Potential Diagnoses, New Medications, and More Tests

Posted on June 11, 2018June 13, 2018 by Grayson

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.

End of Year Health Update

Posted on December 19, 2017December 5, 2021 by Grayson

It’s been a while since I did a health update on here. Things are going… okay? As of last week, I was discharged from pelvic floor therapy. This week, I anticipate being discharged from neck/back PT as well.

Around Thanksgiving, I joined a gym. I’ve been working out 3-6 days a week, depending on how my body is doing. I know that when my body winds up being very numb, it isn’t safe for me to go and do much. Despite being on a prednisone burst, I’ve lost ten pounds in the last few weeks.

I had a follow-up with the neurology physician assistant earlier this month. I left unenthused, to be frank, and frustrated with the lack of care I’m receiving. The PA was more concerned about telling me to do things I already do and medication-shaming me than working with me around the very odd symptoms that reared their ugly head big time this year.

I find it alarming to tell a patient in distress that there are medications that can alleviate their symptoms but they’re on “enough already.”

Still, we added in B2 and magnesium which – when I take them both daily versus as needed – have helped with my migraines. This has had no effect on my odd numbness, though, as the PA assumed it would. This tells me that my odd symptoms aren’t related to my migraines (as she assumed) or that these levels aren’t enough to tackle the issue.

a variety of pills, capsule, and tablets of a variety of colors in someone's hand

It takes me about 20-30 minutes to take my morning meds now. It’s frustrating to have to sit with illness first thing in the morning for so much longer. That said, I know doing so helps me to process this stuff all better from a physical standpoint at least.

I’m wondering whether or not my odd symptoms combined with worsening rash could be something related to mast cells like Mast Cell Activation Syndrome (MCAS) more than anything else. I’m playing with the idea of calling for an evaluation. Honestly, I’m avoiding it because I can’t handle another doctor refusing to listen and shaming me for using medications to live a higher-quality life.

On the dental front, there are two crowns we have to do. One is on a front tooth and another is on a back molar that really doesn’t function. I’m not sure that it’s worth saving that tooth honestly. The cavities we’ve been playing catch-up with are taken care of now, thankfully.

My acupuncturist has been incredibly helpful, getting me to unwind more than I was when I was going to a clinic for this. He’s so much fun, too, and we talk a lot about sex education, impromptu consults, and more. I don’t think I’ve ever left every single appointment with a provider with a hug and renewed peace of mind like this.

I was lucky enough to snag three free months of Talkspace back when they were giving free months out for survivors of abuse. I haven’t utilized my therapist very heavily – partially because I always skirt the big things – but it’s been helpful to have. She’s great, only lives a few hours from me, and is incredibly similar to me in the best kinds of ways.

Over the last few weeks, we’ve dealt with Jaq having an upper respiratory infection for weeks (which can be fatal quickly for guinea pigs), major depression, apartment issues, increased rash, interpersonal havoc, and more. It’s been a lot to handle on top of everything going on in our country and world.

Why Should I Pay So Much Because I Was Abused?

Posted on December 7, 2017December 5, 2021 by Grayson

TW: abuse, neglect

I had a dental cleaning today – my fourth that I can remember.

I love my dentist. The whole office gets it. They’ve done a lot of community work for people like me who have grown up with abuse, neglect, and in poverty.

Earlier this year, we got the last crown I needed on… except that, today, Brit told me we’d need to probably do another crown on another front tooth. We’ve been patching it for a long time, but it’s not sustainable.

It’s a tooth that has always sucked. Even when I had my baby teeth, this tooth was awful. Part of me knew this was coming. Like, especially after the one of the other side broke off last year and we had to do urgent crown stuff.

Since I thought we were done with the crowns, we dropped the insurance that covered crowns. Clearly, I should not have. It’s not like we can’t afford it, especially when we space out the payments and now that I’m bringing in money again.

It’s more the frustration.

I will forever be paying for being a victim. There will never be a point where I’m not playing catch-up for 14 years of medical neglect and 25 years of emotional (and sometimes physical) abuse. Comparatively, I have it easy, too.

That makes me sick to my stomach, especially combined with providers who refuse to give medications that can aid with quality of life because I’m on “enough meds already.”

Long story short, my neurology follow-up on Tuesday wasn’t great either. The PA was much better than the neuro himself which I appreciated. Still, I get shit explained to me like “you need to focus on getting better sleep” or “skipping meals can cause migraines” and, again, “there are medications that can help with those symptoms BUT…” let’s try these lifestyle things first.

I’ve spent most of the week roughly 75% numb across my body. It’s forcing me to not work – and work out – as much.

Plus, it’s a real mindfuck.

I’m tired of paying for Mother’s mistakes, providers’ lack of empathy, and for simply existing. It’s exhausting as fuck.

Today, I Had to Beg for Migraine Control

Posted on August 31, 2017December 5, 2021 by Grayson

B&W photo of a hand holding three pills (two capsules and one tablet); underneath is a yellow-cream bar with black text "Today, I Had to Beg for Migraine Control" and under this a black bar with white text "not standing still's disease"

Today was my follow-up with neurology, which also happened to be for an EMG and nerve conduction study.

Over the last few days, I’ve been doing research around what might be potential differential diagnoses for what I’m facing. I did research, read research others sent me, and bounced ideas off other smart people. I put together a list of tests I’d like ordered, possible diagnoses, concerns, symptoms (new and old), etc.

And didn’t get to do a goddamn thing with it.

The EMG was uncomfortable. Essentially, they’re sending electricity up and down certain nerves in order to gauge how ‘normal’ nerves are functioning. Obviously, this results in the movement of limbs without trying to move. Both the test and the reactions are uncomfortable and not fun.

The nerve conduction study, also called the needle test, consists of sticking a needle where a nerve and muscle meet. Then, they have you move in a way that would stimulate these nerves while the needle gauges how well the nerve and muscle are communicating. For me, this was far more uncomfortable – maybe in part because some of this was done near my bulging disc and middle of my back.

All of this is done with no medication. The needle test winds up leaving blood spots all over, resulting in interesting looks if you go out afterward.

While this all was uncomfortable and even painful, this wasn’t what bothered me the most about my appointment.

After going through these tests and them not finding anything, I asked my neuro if the bulging disc could be causing/exacerbating symptoms. He flatly dismissed this.

He then returned to my chart and began to look at my medication list. He said he was leery of putting me on anything to control my migraines because I was already on ‘too many medications.’ I explained that I have multiple diagnoses, so obviously I’m on meds for these. He countered with concerns on contraindications and interactions.

He literally didn’t want to do the work to check which medications I could take. I had to make a case for getting my migraines treated. I literally had to beg for pain relief.

I explained that nothing I’ve been using to treat my migraines is helping anymore. I’m having them more often as well. This is what I was referred here for, after all, to control my migraines.

He relented, asked if I’ve been on a tricyclic antidepressant before, and said he would add one and then check the contraindications and interactions to make sure it was safe for me to take.

Yes, the antidepressant he prescribed can be useful in preventing migraines for people. However, I also wonder if this is some way to get a young femme out of his office and to stop annoying him. When doctors don’t know what to do – or don’t believe the patient is in pain – antidepressants are often the go-to drugs.

I find it odd, too, that he would prefer sticking me on a second antidepressant daily to working with a relief medication for when I do get migraines I can’t control through other means. There is a higher chance that I could deal with a severe mental health issue here compared to other, lesser side effects with heavy hitters.

All of that, and I don’t go back until December 1st. I’m supposed to call in a month to report back how the medication is doing, but that’s it. No further tests around my nerve shit, and no more working down that path to a diagnosis for that.

I walked back to my car and cried. I’m very upset. It’s just like my initial illness stuff in 1993/4 and getting a fibro diagnosis between 2010-2012. The whole thing just screams old white cishet abled paternalistic doctor dismissing young femme(ish) patient’s invisible pain, and I can’t live like this for too much longer.

I shot my GP/GYN a note and explained about the bulging disc. I also explained that I do acupuncture – a common first-line in reducing pain, according to this med system’s website – and I wanted to see what else we need to/can do to deal with this. I’ve barely been able to sleep and, when I do, I usually wake up around either midnight or 5 am to move to the couch because of pain.

This whole day went to shit. I should not have had to beg for control of my migraines, especially when it’s because a doctor couldn’t pull up a goddamned color-coded alert in the MyChart system. It’s not like he even had to look on Drugs.com like a normal fucking person.

UGH.

I cried, drove to Target to get my new script (fawning at the gorgeous pharmacist like the queer newbie I am), and rage ate a large frozen custard with peanut butter cups. No, not the best decision, but something I needed to do for me right then.

And so was pizza because fuck cooking tonight.

No one should have to beg for pain relief, especially when it takes so long to even get in front of a doctor who can help. Period.

Research Mode: Expert

Posted on August 28, 2017December 5, 2021 by Grayson

photo of a lab setup with beakers and test tubes filled with various colored liquids; under this is a white background with green text "Research Mode: Expert" under which is black text "Not Standing Still's Disease" and under that is a line of diamonds in the same green color as the other text

When I was little, doctors couldn’t figure out what was going on with me. We had to find an answer and bring it to them. This seems to be a running theme in my life.

My recent “bladder cramps” (we think?) were investigated. Nothing odd showed up on my transvaginal ultrasound or in test results. *I* had to check back in with my GP (also an OB/GYN) and see if she thought pelvic floor therapy would be a good idea. After several days (and asking me to re-explain symptoms in my records from our last visit), she said yes.

Now, with another neurological test on the horizon, I find myself doing the same thing.

[Book with a dark background and cells/biologic drawings on it; "Pathophysiology: the biologic basis for disease in adults and children" by Kathryn L McCance, Sue E Huether, Valentina L Brashers, and Neal S Rote]

Obviously, having a rare disease is tricky. Knowing more about my familial history of weird undiagnosable neurological stuff makes it extra fun. Naturally, I’m starting to do my own research on some things.

Because, again, running theme.

My latest MRI showed a bulging disc that was noted to be more severe in my records (that I received on Friday) than was listed in my test results. Instead of listing just that there is a bulging disc at L5-S1, it lists the following:

L5-S1: There is a broad-based disc bulge with more prominent far lateral components causing mild-to-moderate left and mild right foraminal narrowing. No canal stenosis.

Now, that makes it sound worse than a simple wear-and-tear or overweight-patient version of a bulging disc, right? I think so.

What is also important to note here is that the bulge is worse on my left side, just like anything else in my body. Based on my pain, I knew this already. However, it is somewhat bilateral (on both sides), which is important to note as well.

This also sounds much more like it could be contributing to my symptoms – and even potentially the “bladder spasm” stuff. Of course, neither my neurologist nor my GP/GYN have addressed the disc… which pisses me off.

In addition, I’ve begun having headaches that start intensely anytime my head goes forward past a certain point. When this has happened before occasionally – mostly after being very physical – I’ve been able to ease them by relying on my chest for this movement as opposed to my head/neck. That’s not the case now, nor is it only when I’ve been active.

It really sucks, especially on top of the other symptoms. That said, it does keep pushing me in the direction of more rare conditions like a CSF leak. To be honest, when my symptoms could be relieved earlier this year with being horizontal, I thought this could be a thing – and this can happen in the spine.

I should know more once I get my medical images and/or after my EMG and nerve conduction test on Wednesday. I’m hoping I can also start a medication for migraines, which should have been done already.

Oy.

I’m not ecstatic about these tests. However, I know that they might help yield some answers. I’m just hoping the range of testing that lies before me won’t also cause a ton of extra pain. I’m not equipped to deal with as much as I’ve been facing as is. Adding more in without adding in any actual painkillers might, well, kill me.

Not if I find the answer first.

Latest MRI Results

Posted on August 15, 2017December 5, 2021 by Grayson

In my last health update, I shared about how I had an MRI coming up on what was last Friday. In reality, it was two MRIs scheduled back to back (HA!) – one of my thoracic spine and one of my lumbar spine.

The MRI team was great. We talked about tacos, guinea pigs, and fun things to do in the area. More than that, they were incredibly caring and very helpful.

I took a Valium before the MRI and it worked much better than the last time. I was incredibly groggy and wound up sleeping for a good amount of the time I was in the machine. To be honest, I don’t even remember how much of the time I was awake.

That was perfect – exactly what I needed since my head got to be in the most narrow, coffin-like part of the machine for nearly the whole time.

T and I went out for tacos at our favorite local place, and then I came home and slept for a few hours, waking up incredibly alert and ready to do things. In the middle of writing my last paper for my masters, I got an email about my test results.

My thoracic spine MRI came back completely fine. This part of the spine, for those unfamiliar, is between the neck and the lower back. My lumbar spine, though, did not.

“At L5-S1, mild broad-based disc bulge results in mild to moderate foraminal narrowing on the left.”

Yeah, I had to look that up too, but I knew it wasn’t great. The note said that these were ‘degenerative’ changes, though knowing my body this may not be entirely true. The short story is that I have a bulging disc, causing stenosis that is smooshing some nerves.

Now, the note from the radiologist in my test results says this isn’t causing my symptoms. After doing my own research, I feel like this could be, though. Everything I’ve found discusses how back spasms can be a part of this – something I’ve had since 2012-ish but was told this was due to scoliosis that my physical therapist at the time and I found on my X-rays.

Anyway, the symptoms can include pain (duh), muscle weakness, pain along nerve paths, pins and needles or hot feelings, numbness and tingling in the extremities, and more.

The symptoms that worried my neurologist as I explained them were bowel and bladder incontinence that came up during my last big neurological thing. It’s important to note, though, that having IBS can explain that in conjunction with all this. Think about it – muscle weakness and an already-upsettable GI tract?

My back pain is becoming more prominent. I think part of it is because I know this isn’t something to dismiss as I was told to when it was ‘just’ scoliosis-related pain. Thinking back, the summer of 2012 is the first time I also had some of the neurological symptoms I’ve complained of recently, including issues with temperature regulation.

It could certainly be coincidence, but I don’t know. We shall see. I haven’t heard directly from my neurologist’s office. I suspect I will sometime this week, though. If not, I know that my EMG coming up on the 30th is with him so we can talk more about things then.

Health Update: Yet Another MRI

Posted on August 2, 2017December 5, 2021 by Grayson

Back in March, I had seen a neurologist in one health system. The entire department left and I got a referral to the department in the other system. Unfortunately, my initial appointment wasn’t scheduled until the end of August.

I woke up Monday morning at 8 am to a call from neurology, though, to offer me an appointment at 8:30. I got up, took meds while on the phone, and sped over to the clinic. My primary doctor only referred me for my migraines, leaving out the weird neurological stuff I’ve been dealing with all year.

I made sure to share what was going on, though, on the off chance he would be as concerned as I was. And it paid off.

We honestly didn’t talk very much about my migraines. I wish we had a treatment plan there, but I also understand that my symptoms would be more alarming. Doc ordered an EMG to test my nerves for the end of August. I also have another MRI on the 11th to check the rest of my spine.

I didn’t even need to bring it up, but doc was upset that this hadn’t been done before. He might’ve been more worried than I was, which was a nice change. Various illnesses and nerve problems can be found further down the spine and not always sit in the head and neck… including MS which keeps popping up as a potential.

We will see what the MRI shows and go from there. Since the EMG is done by the neurologist himself, that will be a follow-up appointment with him and I can bring up a treatment plan for the migraines.

These are all tests I asked my previous neurologist for before he left, and there just wasn’t time or he didn’t think these were necessary. It was so validating to have someone new share my concerns without me even having to state them. I’m really grateful that I was able to get in early and get things moving more towards a differential diagnosis.

For now, though, I’m off to D.C. to present on chronic pain and sex!