Thread by @kazweida

I'm struggling with serious health concerns that I'm going to go public with here for 2 reasons.

1: @UofUHealth has bungled my care on several occasions. After 8 months, I still don't have a diagnosis
2: My insurance company @BCBSWNY is obstructing my care & I need help
(THREAD)

(2) I'm a pretty healthy, active woman in her 40s. In March of this year, I developed intense migratory pain and fatigue. It began suddenly one day in my thighs, a bone-deep ache that worsened in the afternoons and evening.

In truth, the feeling was familiar.

(3) I'd had short episodes of this for the past several years but hadn't thought much of it. These aches usually occurred after a long flight or in a new climate that was cold or wet.

I assumed it was evidence of circulatory problems or the beginnings of arthritis.

(4) The intensity of the attack earlier this year startled me. And it turned into migratory pain that chased around my body. One minute it was in my wrist, the next in my knee or foot. Anti-inflammatories didn't seem to help at all.

My PCP wasn't available so I saw someone else.

(5) This doctor was convinced my symptoms were evidence that I was sitting too long at my desk for work and that I was tight through my hip flexors. He recommended I get a sitting ball to correct my posture while I worked.

He made me feel silly for taking the pain seriously

(6) After a few days of second-guessing myself, I insisted on seeing my PCP. Pain so bad it kept you from falling asleep wasn't normal I told myself. I could feel in my bones something was wrong. Literally.

I traveled an extra hour to see my PCP at another clinic.

(7) By now it was April and my symptoms had worsened. I was having chills and fatigue so debilitating I couldn't exercise anymore. My PCP ordered bloodwork and at first, it seemed to turn up an easy answer.

My ferritin levels were extremely low and I was iron deficient.

(8) Iron deficiency seemed bizarre because I eat paleo as well as taking a daily multi with tons of iron in it. But we chalked it up to malabsorption due to age & she had me start taking iron supplements.

Within a week, the symptoms improved slightly.
But then disaster struck.

(9) In May I developed a tooth abscess, the first one I'd ever had. The dentist was puzzled because there was no sign of cavity or trauma to the tooth. I began antibiotics and backed off the iron for a while.

Bacteria like iron, too and we didn't want to worsen the infection.

(10) It took two rounds of antibiotics to beat back the infection and when my dentist tried to perform a root canal, he found the root had calcified. I was referred to a specialist.

Meanwhile, my iron deficiency was worsening and strange new symptoms were cropping up.

(11) I'd get a sore throat. EVERY AFTERNOON. It was so weird. At first, I thought I might have developed some sort of allergy. And my throat worsened enough that I began to get hoarse and was constantly throat clearing.

Again, my PCP wasn't available so I saw someone else.

(12) It's was June and while my tooth abscess has finally been resolved and I was back on iron, I really can't shake this sore throat. The new doctor thinks it's possible that it's silent reflux.

In addition to putting me on proton pump inhibitors, she orders an upper GI scope.

(13) I also double down on the reflux diagnosis by switching to an alkaline diet. My throat heals slowly over the next month, but I develop new symptoms that worsen as my throat improves.

Ear pain and popping. Neck stiffness. At one point, I even have sciatica.

(14) By mid-July, I've lost weight & am back in to see my PCP because of pale stools (I know, TMI). She takes me off the proton pump inhibitors.

At this point, I've got stabbing headaches that are radiating from behind my ears, pressure behind my eyes, and worsening ear pain.

(15) She repeats my bloodwork and is puzzled by my ferritin level, which has dropped despite taking iron supplements. At the upper GI scope in August, the results are in some ways disappointing.

Some minor esophagitis but no indication of serious problems.

(16) At this point, my stabbing headaches intensify & the ear pain is constant. My PCP refers me to an ENT specialist. They do a full workup and conclude that my hearing is excellent, there is no fluid in my ears, and maybe I just have TMJ.

He does turn up one strange thing.

(17) The ENT notices my septum has completely worn away in my nose. He is convinced I must snort drugs, which I assert adamantly I never have.

The ENT tells me he'd worry about nasal cancer if I am REALLY sure I'm not a druggie, then proceeds to decline to refer me for a biopsy

(18) I go back to my PCP in a few weeks to repeat bloodwork.

At this point it's September and neuropathy is zinging around my body focused on my head, neck, and spine, symptoms of carpal tunnel or tendonitis in my right hand and the migratory pain is back.

(19) My basement is under siege for mold and my PCP speculates that it might be the root of my weirdo symptoms, so she orders me to stay out of that part of the house and refers to me a neurologist.

Neurology at @UofUHealth has a waiting list of up to 6 months.

(20) Meanwhile, my bloodwork shows my iron has improved slightly and I've tested negative for the inflammatory markers that would signal lupus or rheumatoid arthritis.

At this point, my headaches and facial nerve pain get so bad that I grow increasingly desperate.

(21) In late September I see a sports medicine specialist for the tendonitis and carpal tunnel in my hand, which got so bad at one point that I couldn't make a fist.

He's actually one of the first doctors who takes the time to read my full medical history before he sees me.

(22) He performs several exams and is stumped. The nerve symptoms I'm describing don't make clinical sense.

When I bend my neck down, I get zingers down my spine. When pressing the top of my head, my scalp burns. Then my left shoulder blade goes numb while my arm is unaffected.

(23) He orders a neck and upper spine x-ray which shows that I have no issues with discs or any pinching. It all looks perfect on the imaging. But there is obviously something very wrong.

He tells me he'd strongly advise a brain MRI to rule out MS or a brain tumor.

(24) At this point in late September, my symptoms align closely with trigeminal neuralgia, also dubbed the suicide disease for the intense pain it causes. I have 300-500 attacks of this stabbing pain daily, usually worsened by sitting.

dailymail.co.uk/femail/article…

(25) Sitting for short periods of time also seems to prompt the sore throat & a metallic taste in the back of my mouth.

My PCP orders a brain MRI and I'm finally contacted by the neurology department @UofUHealth . They refuse to proceed with an appointment until the MRI happens

@UofUHealth (26) I go back to my PCP for more testing in October while I wait for the brain MRI to rule out things we haven't thought of yet. In the beginning, my doctor would say "When you hear hoofbeats, think horses not zebras."

We're in zebra territory now.

(27) Thyroid tests turn up negative. They look for protein in my urine and turn up some curious results but because the lab at the clinic did the test wrong and accepted a random sample instead of a 24-hour sample, I have to repeat the test.

I do the test again & it's conclusive

(28) Any protein in your urine isn't good and it dinicates problems with your kidneys. I email my PCP and ask her to review the result and let me know how to proceed.

I don't hear anything for a few days. Then last night I get a response to my email in my chart.

(29) In response to me asking for clarification about what my test results mean and how worried I should be, I'm told to make a followup appointment.

"Since you have so many issues, you should probably just make an appointment."

(30) No additional information from @UofUHealth about my test results, whether they indicate a kidney infection or disease. Just "make an appointment." Thanks a lot. Like I haven't seen every specialist under the sun already.

Then I get a phone call.

(31) It's the radiology department. @BCBSWNY has denied coverage for my MRI scheduled for Monday. The appeal process involves a peer to peer review, but the clinic has already let me know my PCP is out of the office.

So here I sit. In tears. Wondering what to do next.

(32) It's been 8 months of chronic pain and shifting symptoms. I've done what my doctors told me and kept waiting for my turn. I've sat in their queues and followed their procedures and hoped for the best.

And now there is nothing. Any hope I had of getting more answers is gone.

(33) This is A LOT of personal health information & you're probably wondering why the hell I would share it but I hope it's clear.

Our healthcare system is VERY broken.
When people with chronic pain kill themselves, it's because they feel unseen & unheard.

(34) It's a very inhumane process. And organizations like @UofUHealth and @BCBSWNY don't leave people like me with much hope for anything better.

Take care of yourself people and value every good day. You never know how many you have left.

Gosh- I’m glad they discovered it and you got treatment in time but geez. I’m sure regretting not pushing for biopsy.

@UofUHealth @BCBSWNY Update: MRI has been denied by @BCBSSC as @UofUHealth hasn't provided adequate clinical info. The decision is final.

I've canceled my appointment for today. I'm not sure what steps to take anymore.
Thanks for the help amplifying & advocating.
I'd hoped for a different outcome.

@UofUHealth @BCBSWNY @bcbssc Update #2: I have NEWS.
@BCBSSC approved the brain MRI but denied the c-spine based on a peer to peer review. Because I suspect my neuralgia is potentially related to MS, this makes ZERO sense.

The protocol for an MRI diagnosis is to do both spine and brain imaging.

Update #2 cont: I'll be paying for my spine MRI out of pocket & praying for insurance to reimburse those costs on appeal.

It'll cost me nearly $3,000 despite the fact that I have insurance to get the care I need courtesy of @BCBSSC

This isn't healthcare. It's for-profit care.

@bcbssc Update #2 cont: Shoutout to Jake in radiology over at @UofUHealth hospital who was the nicest person I talked to today.

He kept every promise he made, called me when he said he would, and was very compassionate about my situation. If only everyone could be like Jake.

Post MRI update:

Hey, Twitterverse

You kept me sane today.
And even though I ended up paying out of pocket for part of the MRI and am $2,500 poorer despite having insurance, I firmly believe @bcbssc approval for the brain MRI happened because of you

Thank you.
I’ll update soon

While I was having my MRI, my lovely and talented friend @knappst3r wrote this. We watched a close friend die a few years back from Stage 4 breast cancer and she knows waiting rooms far too well.

We’re all just waiting.
For better health. A better quality of life. Just waiting.

(35) This morning @bcbssc called to let me know they approved the brain MRI but not spine. They said they might approve later like they were giving me a consolation prize.

Here’s the problem. Brain & spine MRIs are standard protocol for MS diagnosis.

healthimaging.com/topics/cardiov…

(36) Delaying doesn’t even save money. Not long term. It just delays diagnosis and inflicts cruelty. @NMSSMI will tell you that many MS sufferers wait years for a diagnosis. And that early diagnosis is key to ensuring better patient outcomes and controlling flare ups.

(37) I’ll be appealing this decision by @bcbssc . I’ll also ask the HR department who contracts with them to advocate for me.

I’ll be filing a complaint with the Utah Insurance Commissioner. I don’t want other patients to suffer the same delay in getting the care they deserve.

(38) Many of you have asked for regular updates so I’ll pop in and add onto this thread occasionally.

No word on the spine MRI appeal, and the MRI results themselves were both disappointing and encouraging.

On the one hand I have a normal brain. (Sort of, you know what I mean)

(39) And while there is some narrowing in my spine, it’s definitely not severe enough to be pinching nerves.

There was one abnormality on the brain MRI that may provide a clue.

I do have cysts in my maxillary sinuses and thickening in other areas of the sinuses.

(40) I’ve been assured that the foul taste in my mouth and the neuralgia, ear pain, sore throat couldn’t possibly be those cysts. My doctor insists many people have them without having any symptoms at all.

I’m pushing to get a second opinion from an actual ENT.

(41) I’m glad that I had the MRIs to rule out MS so we don’t have to continue to go down that rabbithole, but if this whole thing turns out to be a nine month case of undiagnosed sinusitis I’ll be pretty pissed off. 😒

Like good lord people. How could we not have started there?

(42) I have updates!
Last weekend I ended up in the ER at St. Mark's. The metallic taste in my mouth had gotten aggressive & the afternoon onset & corresponding trigger with sitting had me worried I was actually dealing with a CSF leak.

Those are nothing to mess around with.

(43) The ER doc at St. Mark's was one of the first people to actually listen to me. Like REALLY listen to the whole story. He scratched his head and assured me that while a slow CSF leak was possible, the last place I wanted to confirm that with a lumbar puncture was the ER.

(44) He also agreed that the fact that I hadn't been referred to a neurologist was ridiculous and he remedied that immediately by issuing the referral himself. I was able to get an appointment within 72 hours.

Unfortunately, this was a little too good to be true.

(45) This neurologist also ran a sleep clinic and his office was located in an apartment complex. I can confirm that the one-star Google review that stated the office looked like it came straight out of the set of "Better Call Saul" is accurate.

My appointment was a mixed bag.

(46) This dude spent a lot of time questioning my account of symptoms and arguing with me. And in the end, he tried to sell me on doing a sleep study even though I insisted that I slept well and had no trouble falling asleep.

He never examined me.

(47) Though I presented with persistent neurological symptoms that probably warranted investigation, this neurologist never came out from behind his desk to look at me. He talked at me from across the room.

I spent a lot of time nodding and listening and trying not to cry.

(48) The neurologist referred me for an echocardiogram and did provide one new avenue to pursue. He believed all of my symptoms were related to low blood pressure.

I've had hypotension most of my adult life but it had definitely worsened in the last five years.

(49) I left the appointment discouraged. The neurologist seemed to believe that if I just drank more water and slept better, I might see a reduction in my neuralgia symptoms. I felt like I'd been scammed by a charlatan.

The next day I went to an appointment with a new PCP.

(50) Do you know how sometimes you meet someone but you feel like you've known them forever? Like for sure you've met before? This new PCP felt like a familiar friend.

This doctor didn't patronize me and she listened carefully. In the end, she handed me a questionnaire.

(51) I filled the questionnaire out without knowing what it was & when I finished, handed it back to her. She tallied up the score. Her mouth quirked up just slightly and she said, "That's what I thought."

"What?" I asked.

"You meet the diagnostic criteria for fibromyalgia."

(52) The clue she said was the low blood pressure and the migratory pain. And the way I described that sometimes it felt as though there was a volume button & someone either turned it down or up on my pain.

The weird, creepy neurologist was right about the blood flow to my head.

(53) But he didn't find the why. And this new PCP spotted it almost immediately. All the breadcrumbs along the way had pointed in this direction. It just took someone new to see the pattern.

Sadly, fibromyalgia doesn't have a test.

(54) Fibromyalgia is not understood well and neither are the causes. It primarily affects women and the pain cycles seem related to hormonal changes and blood pressure fluctuations.

But it does have a treatment. And for now, that's enough.

mayoclinic.org/diseases-condi…

(55) HEALTH UPDATE
Yes, I tweeted that in caps but it's a BIG update. After seeking out a second opinion last week, I pushed my new PCP to do a test called ANCA. It's something that would capture a fairly rare set of diseases that fall under the umbrella of vasculitis.

(56) The missing septum that the ENT noticed back in July seemed like a very specific breadcrumb that would indicate something called Granulomatosis with Polyangiitis, formerly know as Wegeners.

my.clevelandclinic.org/health/disease…

(57) GPA is pretty rare and not well understood, but the blood vessels become inflamed. You can have a localized or systemic GPA. It can involve massive organ failure and if left untreated, could result in death within a year.

My test came back with elevated levels of PR3.

(58) PR3 is strongly indicative of GPA. In fact only 2% of those with elevated PR3 will end up not having GPA. It's conclusive enough that most docs will start you on steroids right away to prevent further organ damage while they wait for a biopsy to confirm the diagnosis.

(59) My doc made a referral to the @UofUHealth rheumatology department. When I called them yesterday after receiving the results, I stressed to them that is a rare disease that can progress quickly and requires critical care. With steroid treatment, 90% of people recover from GPA

(60) But once the GPA becomes systemic, it can be difficult to beat it back with immunosuppressants so early treatment is critical. Given that I'd already had symptoms for nine months, I knew my clock was ticking fast.

I called the rheumatology department again this morning.

(61) They casually informed me I'd have to wait 2-3 weeks for an appointment and if I was so concerned about my symptoms I should contact my PCP for care.

My jaw nearly hit the floor.

I was stunned by the callousness.

(62) It's likely I have a rare, aggressive form of vasculitis that could kill me within the year. And they can't be bothered to expedite my referral and given me an appointment this week.

I have kids I'd like to see grow up. I need immediate critical care.

(63) I'm sitting here not sure what to do. Others with this suspected diagnosis have gone to @MayoClinicHS and been seen immediately and given aggressive life-saving treatment.

Why is my life worth less? How do I make sure my kids don't grow up without a mother?

I need help.

@MayoClinicHS (64) Don't get me wrong. I'm so glad to have a diagnosis. Even if it's rare and scary as fuck. But now I just want to be able to do something. And manage my care in a way that gives me 20 years instead of 2.

If only we had a healthcare system that could support that.

The person I’d really like to see is this woman @ClevelandClinic . She specializes in my suspected diagnosis. I called and they told me she doesn’t have any appointments for three months but they promised to expedite my request.

Please @ClevelandClinic 🙏
my.clevelandclinic.org/staff/5879-car…

My PCP’s comforting advice at this point. “Maybe it was a false positive. You probably don’t have vasculitis. Two to three weeks should be fine.”

Declined to prescribe me steroids or to order a biopsy or testing for kidney function .

These docs are killing me. Literally.

(67) Update: Since I was struggling to drive long distances, my husband flew out to Palm Springs last weekend & drove me home. While he was speeding through the desert, the ear and head pain would get severe and I'd start to lose consciousness.

It was pretty scary.

(68) It happened several more times and I noticed that only standing for a while and eating (bizarrely) improved the pain and disorientation. When I got home I started placing pressure on doctors to begin hustling.

If this was GPA, we might not have much time left.

(69) One of the wonderful things that happened is that I got hooked up with a patient care manager @UofUHealth . She handles patients with chronic diseases and helps them manage their care.

Within hours I had tests ordered and a coveted appointment with neurology.

(70) My bloodwork turned up some strange things this time around. Low levels of granulocytes, a low anion gap, and slightly elevated carbon dioxide. All my inflammatory markers were still low to non-existent.

But my ANCA PR3 was still showing some activity.

(71) My PCP at U of U sat down with me for an hour and we drafted a plan of attack. And in less than two days she got an ENT surgeon to commit to doing a nasal biopsy and the director of the vasculitis clinic to see me.

It feels like a miracle. I cried. She cried. Everyone cried

(72) It feels weird to be excited about getting diagnosed with a rare, deadly disorder. But knowing is half the battle & I'm hopeful with the right treatment, I can slow the progression of the GPA.

November marks my 9th month of symptoms without a diagnosis.

(73) I saw a neurologist yesterday- Hurray. And she couldn’t do anything for me. Boo.

She was kind and amazingly sincere. She apologized for not being able to help & after an exam agreed my diagnosis was not likely a neurological one.

Go see a rheumatologist, she said.

(74) But this neurologist made all the difference because she said...

A) I’m going home & will read everything about GPA tonight.

B) If you don’t get a diagnosis & you’re in pain, come back to me. We’ll figure out how to alleviate the symptoms.

C) I’m part of your team now

(75) The ENT also called & tried to offer me an appointment in January for a nasal biopsy, the next step in confirming GPA. I told them that was unacceptable and advised they talk with my patient care manager if they had questions.

They called back with a December 5th opening.😏