undiagnosedanonymous-blog

[undiagnosedanonymous-blog]

Illness Update

Thursday, 8/1

During the day I noticed some difficulty forming my words clearly, but not to the point of full-on slurring them. It felt like my tongue was too big for my mouth and/or that it just wouldn’t move fast enough for the rate at which I was trying to speak.

Later that afternoon I went shopping at HomeGoods. About 25 or 30 minutes in, I bent down and stayed resting bent down with my butt at my heels to look at the bottom shelf of lamps. As I went to stand back up, I had significant more difficulty than normal and my quads began burning. I experienced this the same exact way as I would in the past when I would near the end of a set of squats and my legs would be tired and really working. Once I was fully standing, I no my quads were no longer burning but both of my legs (vs. just my quads) immediately felt like dead weight and felt wobbly. I also experienced this the same exact way as I would in the past when I would leave the gym at the end of a session. My legs continued to feel like this the rest of the day, but the dead weight feeling eased up a bit once I was home and had spent a few hours resting on the couch.

Friday, 8/2

During the day I noticed again some difficulty forming my words clearly.

All day my legs felt extra weak, but the dead weight feeling I had the day before was gone. That afternoon, I had an appointment with my PT who used the same ART protocols as he usually does for me, specifically for my hips, glutes, and quads. As he was working on my quads, toward the end of working on my right quad, it began to burn a bit and was feeling extremely fatigued each time I brought my right heel back to my butt as I laid on my left side. I had to stop. Also, as he was working on my wrist, my upper arm/shoulder area began burning slightly–though less than that for my right quad–and were feeling a bit fatigued and I couldn’t keep my arm outstretched any longer.

When I got home and tried walking up the stairs to go inside, I barely made it up. My quads were burning and weak, and my calves also felt weak. As I got to the top of the stairs, I began panting and was breathing very fast and could feel a fast/strong heartbeat.

An hour or so later my neck also was bothering me a bit with the normal associated left-sided headache, so I tried the technique my PT showed me, which did help a bit.

By the end of the day, when I was in bed, I got an ice pack and moved it around to different part of my legs, especially my quads and hips. That also helped quite a bit.

Saturday, 8/3

I worked at my computer most of the day today, so there wasn’t a lot of getting up and moving around. As I was driving to pick up my dog from the groomer, I had to lower my arms to the bottom on the steering wheel because they seemed to be getting too tired from holding the steering wheel too high up.

Sunday, 8/4

I worked at my computer most of the day again today so there wasn’t a lot of getting up until the late afternoon when I had finished my paper. As I was working on my computer, I felt some burning and aching in my right hand/wrist area (which currently has tendonitis and associated neuropathy), but then I thought it might have been spreading up the arm and perhaps also to the left hand. I attributed it to just a lot of typing (though no more than I typically do during a full day’s work). I didn’t think anything more of it until later.

I took a shower around 5 PM and around 6 PM I walked outside with my dog to take her for a walk. As soon as I got outside, the sunlight burned my eyes, though I wasn’t actually looking directly at the sun. We walked down the street and back. When we got back inside, I again had mild burning in my quads and calves and immediately fell to the couch from muscle and physical fatigue. I was panting before I had even reached the top of those seven stairs, though I didn’t feel “air hungry.”

I remained there for the next few hours. My parents and I watched two DVRed episodes of NCIS: New Orleans at the end of the night. I noticed a spreading of not so much weakness but pain and aching throughout not only my muscles but most of my joints. I also noticed some mild burning on my outer upper arms, outer lower legs, and quads. Being engaged in the last two episodes of the season had me a bit distracted I guess, and I was able to push it enough out of my mind during that time.

As soon as the last episode ended, I immediately turned it off and went right to my bedroom and plopped onto my bed. My entire body ached and all of my joints were terribly painful—even those of my fingers and toes. Although this phrase is used quite frequently, I did feel like my entire body had been hit by a truck and it felt like every fiber in my body was affected. While this wasn’t the worst occurrence of this kind of experience, what concerned me was the burning sensation/possible neuropathy since I don’t remember ever having experienced that with these past episodes. For a few seconds, my body felt so heavy and was aching so much that I began to feel lightheaded. I began hyperventilating, but then I burst into tears because I was in so much pain and there was nothing I could do about it except ride it out. I felt a bit better emotionally and physically after finishing my episode of sobbing. Simultaneous with the pain, though once the intensity had subsided so that my attention wasn’t 100% focused on the pain, I noticed painless muscle twitching/fluttering across my entire body every 10-20 seconds, though it seemed to favor my legs. Also, the twitching/fluttering sensation I typically get on my right side just below my lung on a now daily basis was occurring frequently during this episode.

Monday, 8/5

Muscle pain and aching was virtually gone today, but mild to mild-to-moderate joint pain remained. Despite taking my Adderall at 9:30 AM, I fell back asleep from 10-11:30. I tried going to Target to get out of the house, but I had to leave. It was a lot of work to walk around and I was becoming very tired again and my neck ache and headache were returning. I slept again from 4-5:00 PM. Lying in bed at night, I again noticed painless muscle twitching/fluttering mostly throughout legs every 10-20 seconds.

Sincerely,

[undiagnosedanonymous-blog]

Illness Narrative Summary (Part II)

Welcome to Part II: Something’s Definitely Not Right

At the end of August, I moved to a new geographic location to start a PhD program. By this time, I’d been having increasing frequency and severity of endometriosis symptoms, as I’d been off the birth control pill now for 3.5 months. To me, pain was just pain, and I was insistent on pushing through. But I didn’t know. I didn’t know what would happen next.

Throughout the next 3 months, I became completely inundated with a whole host of new symptoms that did not appear to me to be related to my presumed endometriosis diagnosis.

It was during an acute storm of mostly new symptoms on September 12th that I wholeheartedly (and broken-heartedly) knew that something was genuinely wrong with me. This storm of symptoms included difficulty focusing my eyes, which led to a general feeling of dizziness; lightheadedness; hot flashes; depersonalization/derealization; and significant trouble with recall; the last of which persisted for (but lessened up over) the next 3 days.

September 2014

Throughout the rest of the month began other new symptoms, which included light sensitivity, impaired concentration, confusion/extremely slow recall of time and place, impaired balance, dyslexia, rapid mood changes characterized by sudden and severe depression, complete loss of appetite, and weight loss. Furthermore, the episodes of nausea and hot flashes that had begun the year prior became much more frequent and severe.

October/November 2014

Throughout October and November began yet other new symptoms, which included malaise, muscle weakness/stiffness/pain, neck ache, headache, ear pain, joint pain, low-grade fever, swollen lymph nodes, sore throat, hoarseness, insomnia, panic attacks, hyperexcitability, disinhibition, pressured speech, and feelings of grandiosity. I also noticed that I was peeing more frequently, though this was usually confined to the nighttime during which I would wake up 3 times on average per night to pee. Furthermore, the fatigue, night sweats, and sleep apnea that had began the year prior became more frequent and severe, and the diarrhea, constipation, and lower back pain that appeared associated with my presumed endometriosis diagnosis and that had began soon after going off the birth control pill in March were also more frequent and intense. 

December 2014

By mid-to-late December, my symptoms had hit a plateau, and had even somewhat lessened up a bit, though they were still very much present. However, I developed 2 additional, somewhat unique, symptoms: widespread noncontact bruising on my legs and an enlarged, scalloped tongue with bouts of slurred speech.

Figure 1. Left leg bruising.

Figure 2. Right leg bruising.

So, during this 3-month period, not only did I experience a serious onslaught of new and terrifying symptoms, but the ones that had began roughly a year before--after my experience with mono--became significantly worse. I think the only thing that did not worsen during this time was the hair loss in the shower.

Sincerely,

[undiagnosedanonymous-blog]

Illness Narrative Summary (Part I)

Welcome to Part I: The Mystifying Mononucleosis

I can’t say for sure how long ago illness began—5 or 6 years—as this is a difficult judgment to make without a diagnostic lens through which to interpret my symptoms, but I’ll begin at 6 years ago.

Roughly 6 years ago, just around July 4th weekend, I became ill with infectious mononucleosis as confirmed by EBV antibody testing.

Within the year that followed after recovering, I began experiencing a handful of symptoms about which, during this time, I was mostly unconcerned and to which I didn’t really give second thought.

My symptoms included fatigue; nausea; hot flashes; night sweats; infrequent episodes of waking up unable to breathe; significant hair loss in the shower; loss of interest and pleasure in doing things I normally enjoyed, leading to a chronic state of boredom; and decreased libido.

Figure 1. Hair loss.

While I did acknowledge that these symptoms were not normal, they did not impair my daily functioning nor lead to personal distress, until the decreased libido, as it was creating problems in my relationship and therefore significant personal distress and guilt. So, I sought the advice of my new gynecologist, as many of these symptoms seemed to have a hormonal “feel” to them.

My gynecologist told me that my symptoms were related to depression from endometriosis, with which I had already been clinically diagnosed. She also said that hormone testing was not possible as I was on the birth control pill, which would alter my hormone levels. I left the appointment with no answers and no options.

Had I not been in a relationship at the time, I don’t know that I would have continued to pursue my symptoms any further since the loss of libido was the only way in which any of these symptoms were interfering with my life and causing distress, as I was constantly worried and felt guilty about my lack of desire.

I took to researching my symptoms online to see if any websites would be more help than my completely unhelpful gynecologist. At some point I stumbled across low testosterone among females who are long-time users of the birth control pill. And, after about a month of research and deliberation, that following March, I took myself off the birth control pill for the first time since starting it about 10 years prior. I needed to do something, and I didn’t know what else I could do.

Bad idea. I had no idea that all that I had been experiencing that year prior would be the very least of my worries.

Sincerely,

[undiagnosedanonymous-blog]

About This Blog

I’ve been chronically and perplexingly ill for 6 years. I’ve been undiagnosed for 5. During these 5 years, I’ve had many interactions, many negative (but also some very positive), with the healthcare system and its providers. During the first 2 or 3 years, I kept a journal of my illness and my encounters with the healthcare system and it’s providers that I believe shed light on fundamental flaws in diagnosis as it currently stands and patient-clinician interactions inherent in this process.

I have a 200+ page manuscript written, but I don’t know if I’ll ever get a diagnosis, so I don’t know if I’ll ever be able to get it published. In the event that this is true, I’d like to continue sharing my story on here as it unfolds. I believe it could provide valuable information for both patients and providers that I hope would foster important insight for multiple stakeholder types in addressing fundamental flaws in the diagnostic process but also patient-provider communication as it currently stands.

Please stay posted for a few initial postings on my illness narrative summary followed by updates regarding my quest for diagnosis and commentary of clinician encounters.

Sincerely,