Thread by @WeAreDisabled

When I first began to experience neck & shoulder pain in 2015 and the inability to digest food, I switched my 2016 insurance plan to a barely affordable PPO, determined to find out what was ailing me. Here's a diagnostic thread for #InvisibleIllnesses. - @jenna_payne

Like most people who thought they were healthy (more on that tomorrow?), we've been told that if you feel sick you go to the doctor and they can fix you unless it's something like cancer or Alzheimer's. I was in for a rude awakening....

CW: diet, eating disorder?
This scene from my medical revenge HYSTERIA is more or less lifted from real life. This was my first appointment after starving myself at 1200 calories/day and gaining 40 pounds in 2/3 years. The problem was NOT my diet.

https://twitter.com/WeAreDisabled/status/1396984816382394370?s=20

*** I have not murdered any doctors, but working on this script sure did take the edge off of my boiling rage.
Alt video description is in the YouTube video description.

I did not give up, but a lot of patients (and their family and friends) will take a doctor's word at face value. If the doctor says, "Diet and exercise will fix this," then the patient is stuck proving their illness. This was terrible, harmful advice for me (and for many others).

I had been exercising. I was taking hip hop dance classes where every whip of my neck caused horrible pain and, like, electrical misfiring into my hands. I became incredibly clumsy (not that I was ever graceful) and had a constant throbbing headache for, like, over a year?

I used my insurance company's 24 hour doctor telehealth line (best telehealth experience, IMO) and explained that I felt the doctor was wrong. My whole family had thyroid issues. Who else can I see? I was sent to an endocrinologist.

The endo didn't find that my thyroid was out of normal range, but that panel looked worse than the one the first PCP ran. She asked about hirsutism (my lovely beard hair), thought my Testosterone was a little high, and suggested PCOS. We agreed to put me back on birth control.

The first month was great. I went to the bathroom more easily, but when I hit the placebo week (no hormones), the progress stopped & never came back. Worse than that, I fell into a deep depression & realized my decade of severe depression was partially triggered by the pill.

CW: depression, suicide, hospitalization
I will probably talk more about reframing my medical history tomorrow, but here is an animation I did about my struggles with depression.

*** I would absolutely change the part about going to jail now. I've learned a lot more about the criminal justice system, including denying medications at regular intervals for pre-trial detainment. This leads to people being found unfit for trial and being held even longer.

I went off the birth control and will never go on it again. Polycystic Ovary Syndrome is no longer considered very relevant in my case history. I was referred to a rheumatologist and an allergist/immunologist.

The Rheumatologist ran a basic panel and did a points test for fibromyalgia. She officially put down fibromyalgia but dismissed my thought that Sjogren's Syndrome was very relevant due to years of eye drops, dry mouth, and receding gums.

I was #HLAB27 positive, which is a DNA marker for the autoimmune arthritis that attacks the spine #AnkylosingSpondylitis. She cheerfully told me to come back in a year despite being in a lot of pain already. She then left the practice, and I have never received these records.

Quick note: my most trusted doctor - a D.O. I saw first in 2019 - seconded my eventual Dx of AS and said that if you have the genetic marker, you have it. It might not be very bad, but if your spine hurts, that is it.

ALSO, women/AFAB present in their necks first anecdotally. The testing is still built around men/AMAB by focusing on the lower back. In 2017, I begged several doctors to image my neck, describing it as broken, and was repeatedly refused. Anyway....

The allergist ran tests and suggested a pneumonia vaccine followed by another round of bloodwork to see how my immune system was doing. Dear readers, I had full-blown pneumonia in 3 days and never recovered to my previous baseline.

When the doctor called to give me the results, I mentioned this first, and then he stammered that my results were normal and it was not possible to get pneumonia (or symptoms of) from a vax. I found out LAST YEAR that he withheld some of the results. My immune system was screwed.

After that monthlong illness, my back hurt even more. I did yoga for ten minutes every day. When I turned my neck, it sounded like a pepper grinder. I mostly avoided doctors for the rest of the year and swapped insurance again.

In 2017, I ended up at a medical group. In late 2016, it had begun raining inside of my apartment. That winter was really wet in LA, and even after our building reroofed, our apartment continued to leak. I got sick once a month - fever, chills, sore throat - for six months.

My PCP at the new place said either the leaks didn't matter or there was nothing we could do about them (testing-wise). She is wrong. Here was my eventual Aspergillus blood test & mold inspection report.

During this time, I was still trying to work my freelance production jobs. I once left my computer at home and drove all the way to the westside of LA (about an hour) to work and had to order a Lyft for my laptop. Colloquially, we call it brain fog, but it got worse and worse.

My last production job was March & April of 2017. It was a 4 day shoot going from days to nights with no travel day to/from Vegas in between. I worked one 24 hour day and then was awake for 36 hours. I never, ever recovered from this job. Two months later, my spine caught fire.

Rheumatology insisted on imaging my lower back even though I begged someone to look at my neck. I could not bear to be touched along my spine. My neck seemed unable to keep my head up. No painkillers worked.

She auditioned several Rxs - opioids, Gabapentin, Diclofenac. I found out later, though, they were all at the lowest doses. I applied for and received California state short-term disability, which was a lifesaver for me twice. I was referred to Neurology for numbness & tingling.

Sorry, back a few months, the one thing the PCP did do was put me on thyroid medication as I now had 3 panels moving closer and closer to out of range, but this was a contested hypothyroid Dx until #Hashimotos this year.

Neurology ran me through some coordination and mental exercises. I remember being asked to name as many words that begin with the letter F in 60 seconds and being unable to come up with more than 5 even though we had just discussed my Face and Fingers (and I did not say those).

I was sent for a nerve study, which I was told was the gold standard. I had numbness and tingling all down my arms and legs. If I turned my head while holding something, I would often drop the object.

Nerve studies are TORTURE. They literally shock & stab you for what feels like an hour. They also are NOT a gold standard because it only found carpal tunnel in my left arm. I am right handed. My neck was "normal." I suspect my spinal inflammation was marked as psychogenic.

How about some good news before I need to take a break and throw up a To Be Continued...?
After Rheumatology didn't do much & did NOT Dx with anything, I found a nutrionist. This is EXPENSIVE but it does help.

I was put on natural anti-inflammatories, immune boosters, and laxatives. At this point, [gross spoiler!] I had been basically bleeding into the bowl whenever I could go because my intestines felt like a hot oven baking my insides. IT WAS SO GOOD TO GO TO THE BATHROOM!!!

Ok, TO BE CONTINUED....
I have a chiropractic appt and some errands, so I probably won't be back for a few hours. I'm hoping to get through this sordid tale today. We're halfway-ish?

And I'm back! Quick note on this long form story: While everyone's autoimmune journey is different, I have learned A LOT from other patients. I'm trying to include the broad strokes in case it jogs an idea for someone else.

After Neurology & Rheumatology declined to Dx anything, my PCP also began to freeze me out (due to the hospital overbilling & me disputing as I found out later). I was recommended a second nutrionist, and he suggested an Epstein-Barr test. Here's a recent one marked up by my D.O.

I was referred to Infectious Disease. The doctor started the appt off with a curt, "What are you doing here?" even though that department ALWAYS demands records before scheduling. He then said that those results mean that you previously had EBV but are not currently active.

This is NOT CORRECT. He asked me if I had been sick lately. Remember those monthly fevers? Well, they had stopped about four months before this appt. What I didn't know is that you can just stop running a fever, stop being regular sick. I didn't run a fever for two years.

The top number is considered a current infection with the bottom two being antibodies from an old infection. Was I supposed to get the lab while running a fever? Also, the bottom two numbers should be in the double digits for an old infection - not off the charts.

Frankly, my experience with the 8-10 doctors at Cedars, including the endo who thought the EBV was a good catch and then never called me again and (sort of) got me fired by my PCP, was so bad that I changed my PCP out of the medical group and stopped going to doctors.

A lot of chronically ill patients take breaks from (can we even call it?) medical care because it's traumatic and can do more harm than good. I had nothing to show for thousands in co-pays and so many hours other than a contested hypothyroid Dx.

At the same time, I ceased being able to walk up or down stairs. I only left the house for doctors appts that fall. I could no longer read because I could not retain the information. I had to use my GPS to leave the house - even to the grocery store.

A friend recommended a chiropractor in late 2017, and I only went to get neck x-rays since no one would order them. My neck was degenerating. It explained the numbness & tingling, and the chiro was an artist.

I had to pay out of pocket and go 3x/week to start, but I regained the ability to go up and down stairs (but slowly!) & hold up my head within a few months. If you suspect inflammation, generally avoid torque adjustments. I wonder what an MRI would have shown prior to this.

I stayed home in that apartment that had deadly mold growing in the walls & above the ceiling. I believe one of my downstairs neighbors died and her husband became disabled over the same period of time that I did. My short-term disability was running out, and I had to find work.

A friend put me in for a full-time job at a post-production house (editing) just in the nick of time. The commute was an hour each way. I couldn't even make dinner when I got home. I just lay down on my heating pad. I rarely saw friends going on two years now.

My then boyfriend, now husband had to do a lot of the heavy lifting (figurative & literal) at home. Housework was punitive. Even making my necessary pill boxes cause neck pain just from looking down to put them in the right slots.

Around the same time I started working again, I tried going back to doctors. My thyroid was completely unmanaged. I saw a Rheumatologist who confirmed my positive HLA-B27 marker, but she also was going to decline to Dx me wiht #AnkylosingSpondylitis.

She began to say, "You know, I feel tired sometimes too or have a little pain here or there." I was in so much pain that day, I had been unable to sit up waiting for my appt. She found me lying down on the exam table.

Honestly, I began yelling, "I used to live in New York and walk six miles in heels. I worked 18 hour days in film production, and now I'm struggling through 8 hour days in an office. This is NOT normal."

Any doctors reading, please ask your patients how this differs from when your patient believed themself to be healthy. We can answer this question, and it should convince you we have a significant loss of quality of life and functioning. I have only been asked once over 40 docs.

The Rheumatologist acquiesced and put down a diagnosis of early stage AS/spondyloarthritis based on MRIs from over a year prior which showed inflammation that I was told did not matter. She prescribed Humira + Methotrexate.

If they had offered to inject me that day, I would have said yes, but I posted on one of my autoimmune patient groups (since I was sure prior to Dx) & asked what other people were on. I was on nothing for the pain or the autoimmunity then. People recommended Low Dose Naltrexone.

LDN intrigued me because of the low side effects and rave reviews I was seeing. Biologics, on the other hand, come with a long list of side effects, and I had watched many, many patients have declining relief with their biologics. LDN: amymyersmd.com/article/low-do…

Biologics also work by turning your immune system down/off. One of my nutrionists explained autoimmune disease as your body fighting things that aren't supposed to be there. In my case, I knew that was mold kicking up viruses like EBV.

I understand why any patient would say yes to biologics. I spent a lot of money & got lucky in providers - like my nutrionist & chiro - to be able to avoid them, so please don't read this as judgment call. I just was looking down the barrel at maybe making it to 40 w/out recourse

I told the Rheumatologist that I wanted to try LDN first. She said no and told me to come back when I wanted real drugs. I never did. FYI - this lawsuit happened that same year: sfchronicle.com/business/artic…

My job got onto me about the doctors appointments even though I did not get paid if I did not go in and had to take whole days off of work to go to the doctor. I stopped going to the doctor again after a second Infectious Disease doctor brought me to tears in an appt.

I had not had a normal range glucose test in over a year at that point, but my A1C continually came back normal. I had tested positive for Coxsackie & Herpes 6 - 2 other long-term viruses. He explained that Coxsackie caused autoimmune heart disease and Type 1 diabetes...

But since I didn't have either of those, Coxsackie was not my problem. The glucose test he ran came back at 147, and his office told me not to come back. Not that I wanted to but pretty wow?

My chiropractor, who had done wonders for my spine despite still being severely disabled, kept recommending a Doctor of Osteopathic Medicine, but because I was so scarred from the system, I kept avoiding calling.

I finally called and made an appt. My job was ending, and I was moving to a production accounting job that I did not disclose my disability to (maybe a whole other thread on that later?).

Two days before my last day in 2019, it leaked in our apartment again. I work up around 12:30am with what felt like a jousting stick in my right abdomen (liver/kidney?) and chills but not fever. I woke my husband, and he drove me to the ER.

My temperature was 98.6 or so, which I realized later probably WAS a fever for me, and they missed sepsis. My blood pressure was also extremely low, but they said the machine was broken. I think it probably wasn't.

The ER doctor offered me morphine as I was clearly in pain. I was in so much pain that I couldn't really speak except to breath out "no." I couldn't explain that I knew something needed to leave my body, and morphine was going to keep it inside.

They injected a saline rinse into my veins, and I was able to turn over out of the fetal position. The doctor said I ate something bad. My husband & I both insisted that we had eaten the same thing. The rain didn't matter. I begged for a full urinalysis but was only given a dip.

I hate how the ER works in this country. Any patient under the autoimmune umbrella is most likely to light up when they're in so much pain that they're in the ER versus a normal-ish day when we go to do labs. This is an undervalued diagnostic tool. I did not want to be admitted.

Anyway, I was released with indigestion. I then was homeless for six weeks because every time I entered our apartment the stabbing pain came back. My husband & I had only been married for 6 months, and it was a REALLY BAD TIME.

I did take legal action against my landlord, but it's hardly worth it. I also tried calling the press, the city, the county, everyone, and no one did anything. We got lucky and found an apartment as we were flying out for our belated honeymoon.

I should show you guys the 1-10 pain scale, which I'm going to leave to OCR to alt text because it's long. I lived at least 3 years, every waking minute between 6-8, but I thought it wasn't THAT bad and kept saying 4 or 5 when asked. You get used to the pain. I don't moan at 9?

@AltTextCrew Can you OCR me?

Follow that reply if you need the Alt Text while I continue here.
Back to this doctor that my chiro recommended. I walked in and said that I was HLA-B27 positive and had just gotten out of the ER after another leak. I brought my EBV results.

He told me the following in the first few appts:
1. I make an anti-inflammatory.
2. Ankylosing Spondylitis is so painful. My Rheumatoid Arthritis patients usually improve faster (not that it's a contest but FYI).
3. How can you walk?
4. The mold, EBV, etc. are all problems.

It felt SO GOOD to be validated. He gave me my first dose of his anti-inflammatory immediately, and it really boosted me for a week. He was right about the walking. If not for the chiropractor & nutrionists, I don't think I should have been able to walk.

I struggled with high expectations and low ability at work all summer and was essentially bullied into quitting for a second round of short-term disability. I had just barely put in the 18 months required to requalify.

I ran my first fever in two years that fall! Someone at the office came in with strep, and I missed a friend's bachelorette weekend. Ugh.

A few days after Christmas 2019, my husband & I both ran fevers while watching the news of #Covid19 in China. My trusted DO immediately put us on Tamiflu (anti-viral) & Augmentin (antiboitic) as there was a nasty rhinovirus going around. I'm pretty sure we beat the rush to Covid.

I think we only left the house twice for anything social in January. My brain still wasn't functioning in February. I'm pretty sure my thyroid had had it and argued with two endocrinologists about Hashimoto's Syndrome.

My doctor prescribed a top tier anti-viral in March that would have cost $3k without the help of non-profit pharmacy AHF. I finally felt myself start to come back - just in time for everyone else to join us in lockdown.

I forgot to mention the summer before he also put me on Voriconazole for the mold, which I had to fight with my PCP to get covered by insurance for two months after the ER. It WRECKED my liver, so not a decision to be taken lightly. I had to eat liver 2x/week for months.

Covid prompted me to get (now) 4 stem cell infusions, which did wonders for my spine and organs. Again, from the DO. Again, off insurance. The stem cells cause something akin to growing pains as the body sends them where they're most needed (my spine & abdominal organs).

I wish insurance would cover this treatment. It was a huge improvement for me. My neck moves better. My digestion improved. I believe I finally have my blood sugar under control.

I've recovered so much over the past year. We also decided to leave LA. His job went remote, and I knew it would not be very safe for me to interact with the general public for a long time. We also needed to cut down cost of living b/c I cost ~$2k/month just for healthcare.

This year, my Hashimoto's antibodies skyrocketed to 133.9. Normal range ends at 38.5. I now have uncontested autoimmune thyroid disease five years after I went to the doctor to suggest hypothyroidism.

Since I moved to a small town with far fewer doctor options, I undertook a project to print and organize all of my medical records b/c I cannot keep doctor shopping. Here is my 4 inch, 10+ pound medical prop that was rage inducing. Red flags are abnormal. Blue are borderline.

But you know what? IT WORKS. My care is already so much better. I haven't quit a doctor yet, and I underestimated how intimidating, as my attorney friend put it, building the exhibits to a medical malpractice lawsuit would be. Why yes! I HAVE tried turning it off & on again.

The latest news? I flew out to LA to see my DO and get another round of stem cells. He noticed my growth hormone was very low, so we're looking at that, which would improve healing.

Big thanks to @Be_Kinderr for this study, which made a lot of sense to me that the mold you breathe knocks out your pituitary, cascading to growth hormone & thyroid: pubmed.ncbi.nlm.nih.gov/19808744/

I have NOT taken the #Covid19 vaccine due to my last vaccine experience & immunocompromised state. We also moved to give me more space & less exposure.

Given that, I thought pursuing a prescription of Hydroxychloroquine for my autoimmune arthritis would be a prudent move. I dig more into that in this thread on my own account:

https://twitter.com/jenna_payne/status/1394397326333169674?s=20

Now, I had an absolutely horrific migraine over the weekend that triggered vomiting, so I'm not sure what the results will be long-term. That said, I think a combo of factors triggered that, and the HCQ will just take some time to hit full effect.

I'm sure I'm missing some hot tidbits & dirty details, but that's the big picture of my illness & diagnosis. I'm going to field replies & questions but sign off of threading for today. Watch my medical revenge teaser HYSTERIA! - @jenna_payne

https://twitter.com/jenna_payne/status/1361364122110226440?s=20

Please unroll @threadreaderapp?