Medical ranting Megathread

The BBQ Pit
1

…I know I’m not the only one. So feel free to share your beefs with doctors, insurance, mystery aches and pains here. :slight_smile: I’ve been wanting to do this for quite a while.

Warning: LONG!

I’ve been in relatively fair health most of my adult life. Some bad, some good. Daytime sleepiness, insomnia, and assorted female symptoms. But I made up for it (I thought) by having really good muscular strength for a woman, and a lot of endurance. Diagnosed with atypical PCOS in 2006, possibly caused or exacerbated by being compelled to take Depo-Provera in the military in the late 90s. OK. High DHEA levels, hirsutism, head hair loss, up and down weight, tons of mini-ovarian cysts, etc., but I kept the major side-effects down with Atkins and a strenuous athletic program (weightlifting, cardio, dance). No major pharmaceutical support for PCOS from the docs. Take random birth control pills.*

Two years later, got a blow to my thyroid due to horsing around with a friend showing me martial arts technique. :rolleyes: Had a thyroid storm because of thyroid cyst (unknown before this time) eruption. Recommended to have the cyst/tumor thing removed eventually, started taking Synthroid, and later, switching to Armour. No improvement, however.

*Got pregnant again, with major gestational diabetes and preeclampsia symptoms, gained over 100 lbs (!!) though I wasn’t binging, but blood sugar levels fairly good. No intervention. C-section #3. Ok.

Lost 80% of the weight in just 4 months, but I came out of the hospital with a weird non-healing lesion in my nose (suspected from the nasal cannula). Around 4 months postpartum, also had a perfect storm of possible triggers for this…condition…I have. Our very old house started acting out. A/C spitting out horrible black mold, to where a glass of water left overnight at bedside would have a film/spores on top. Unused toilet and floor drain in basement caused sulfur smell in the house all day starting in afternoon. The baby and I started sleeping a LOT when that would happen, but couldn’t get services to give me a plan of action for repair. Lots of money spent on all this, nothing actually accomplished.

Also tended to huge overgrown rosebushes the previous owners left, and crazy house settling started making the paint and plaster fall regularly, so I was constantly cleaning/repairing likely lead paint. At the same time, we had my inlaws visit from out of state–turns out my niece who was there the week before I started feeling really funky got Lyme’s disease. She was treated, thankfully, and is fine. I have not even been able to get tested. I mention this just because it is possible cause.

Started getting weird non-draining pimples/psoriasis, and a bad fever and neurological changes that led me to the ER suspecting meningitis. Nothing resolved there. Overworked endocrinologist recommended thyroid removal due to rapid growth of the, well, growth, but when I finally got the prerequisites done with the ENT, and showed up at dawn to get my thyroid removed, he refused to perform surgery because I had the mysterious psoriasis-stuff around my neck and face. Referred to infectious disease doctor. He did a nasal MRSA test (only) and said I was fine.

But, we moved. New docs all around. I don’t think any of them have read my record transfers. My pulse rate has been 120-150 bpm regularly since all this started, and nobody has referred me to cardio. New infectious disease doctor is convinced I’m merely autoimmune, referred. No endocrinologist in area till this year, but my Alzheimer’s-suffering (sorry) primary doc won’t give me a referral because he doesn’t like her. I’ve gained all the weight back and then some due to multiple courses of prednisone. Plus I just hurt all the time and don’t want to move, especially since my heart rate gets really bad. And I got a bad case of plantar fasciitis which has gone pretty much untreated as well. My skin is scarred up like I have leprosy, and nobody will do anything! I’ve become a hermit because I feel and look so terrible. Going bald, too, head and eyebrows. I’ve taken to ordering random skin ointments from sketchy overseas pharmacies just to try to get some relief…

By the way, every appointment out here takes 1-4 months to schedule. So by the time I get followup, nobody remembers who I am, and I barely remember where we left off. Oh, and I had another baby, and the new OB said I couldn’t possibly have PCOS since I’m fertile, so won’t treat me for that. My primary care doc has prescribed me meds I’m allergic to (sulfa) and has screwed up my thyroid meds–he doesn’t even know how to test if I’m getting a proper dosage. Oh, and my eyesight is going. Fast.

I’ve only seen the rheumatologist twice–she can’t decide if I have psoriatic arthritis, Behcet’s disease, ankylosing spondylitis (blood test leans that way) or reactive arthritis due to an untreated fungal or ? infection. Gave me a crazy medicine 3 months ago that reduces immune response, and all my skin stuff got WORSE, but I don’t see her till next week. That med, BTW, is supposed to be given only with monthly liver function tests, opthamalogical assessments, etc., but none of that was ordered. Um, she’s the only rheumatologist around, too.

There’s more, but…to make a long story short, I’m exhausted, I’m in terrible health, my husband (who is an M.D., ha) is beyond tired of all this, and I’m not being a very good wife and mother because I can’t even think straight, let alone the physical complications. I need to check myself into someplace where there’s a “Dr. House” to figure this out, but I don’t quite know how to do that. I’m 36 years old and I’ve been dealing with the worst of this for 4 years now. I feel like I’m 80. I should still be in my prime…the change has been so drastic.

$#%@&(!!

Soooo…thanks for letting me vent, and I’d love to hear other people’s medical rants, if they have any, and maybe we can share advice and support without a million separate threads in IMHO. I **know **I’m not the only one here who is struggling.

2

Do you have access to the Mayo Clinic? They are very good at working with these clusters of symptoms.

I have chronic migraine, lower back and knee pain (accellerated degeneration, basically), lifelong asthma and allergies, lifelong sinus allergies, nasal polyps (which I should have removed but basically they don’t suck enough for me to go through another sinus surgery), GERD (it goes with the asthma), occasional dermatitis, and anxiety (I think I’m entitled). Oh, and perimenopause and all of its lovely symptoms (hair thinning anxiety, insomnia, and hot flashes. We’ve gotten rid of items number 1 and 3). My docs are pretty decent overall, and my neurologist is a lifesaver. He literally got me from being pretty well incapacitated between the migraines, the recuperation, and the drugs, to feeling pretty normal. I still get migraines, but they go away when I take medication. That’s a huge improvement.

My current ongoing issue is finding a dentist who isn’t incompetent, a quack, or a thief. My current dentist is both – in addition to being unable to make a temporary bridge that doesn’t break within 18 hours of her putting it on, she called in an oral surgeon to diagnose thrush. There’s no need for that – it’s just a way for the practice to get reimbursement at the oral surgeon’s rate instead of at her rate. Phuck that.

3

Care to explain how you were “compelled to take” that particular drug?

4

Many women in the military who deploy use hormonal birth control to eliminate their periods. In the 90s, the go-to medication for that was Depo, which was significantly more reliable than the Pill in actually eliminating (rather than regulating) periods.

5

Especially since in the 90s, doctors thought that you HAD to take the inert pills and have a period. Now, not so much.

6

I asked for explanation of compulsion, not popularity of the medicine in question.

7

I don’t want to answer for anyone, but when you’re in the military, following even a moderately strong recommendation from an officer tends to be less of a pain in the ass than rationalizing about the distinctions between a recommendation and an order.

8

You hit the nail on the head. Maybe “impelled” would be a better term than “compelled.” When I was in basic training, IIRC, the Depo shot came right after lining up for immunizations. I have a vague memory of one of my shipmates getting a waiver due to being Catholic. I do remember birth control pills not being an option at the time. After leaving basic and going to A school, I was automatically rescheduled every few months for the Depo booster shots, or whatever you want to call it. So I went and got them. After a few shots I started to notice weird things like half my hair falling out (I kept it as short as allowed by dress code for women, so actually it was the barber who commented) and continuous periods, not lack thereof. My breasts shrunk two sizes although my weight was stable. Etc. It took me a year to really put the pieces together, as I was also pretty stressed out…

More later.

9

Sister-in-law currently in the hospital for the second time for undiagnosed fevers and chest pain. Doctors believe this is a bacterial infection due to lowered immune system since she’s undergoing chemo for breast cancer. Shotgun approach to antibiotics has improved fevers but not the chest pain.

In the last ten days, she’s been given:

CAT scan
Chest X-ray
“Bone scan”
MRI
Ultrasound

…and has been told nothing about the results. Not “negative,” but literally, when we ask her or her son (who has been by her side through this as much as he can), neither of them can report anything any medical professional has said about the outcome of these diagnostics. They’ve been assuming the scans showed nothing, or else Ithe doctors would have said something, but they don’t know anything for sure.

I had a couple of very frustrating conversations with her son about advocating for the patient and questions to ask before and after tests. He’s a good kid, but somehow this is eluding him.

10

Coincidental to implementation of the ACA, my plan was discontinued and I am now paying more for less coverage. I have an appointment this am with the cardiologist who did my catheterization and stent last year. As far as I can tell it is a simple one year follow-up. Double checking the appointment time I notice the mention on “anticipated copay = $145.00”.

Huh? My copay is gonna be $145? Fuck.

11

Three years ago all I had was asthma and a sleep disorder. I cycled everywhere and was in pretty good shape. I was working full-time at a job I enjoyed and had a pretty good social life.

Now I have:

Rheumatoid arthritis in 90% of my joints
Eczema
Parkinsonism, possible Parkinson’s disease
A heart defect
Endometriosis
Asthma
Sleep disorder (PLMD - connected to Parkinson’s)

I can’t walk well, can’t reliably use my right hand, shake a lot, get lots of infections whenever I’m off the methotrexate due to my white blood cell count, my asthma’s got worse and worse, and also my eyesight has deteriorated. Can’t stand bright lights (a side effect of one of my meds) and now need bifocals as well as my usual -8 prescription, astigmatism and double vision (don’t know if you have the same scale in the US, but minus 8 isn’t good). So I can’t see well in contact lenses any more even on the days when my hands and dry eyes will cooperate with putting them in.

Medication is making my hair thin, giving me anxiety that manifests as fucking awful claustrophobia, making me itch like hell, and gain weight - thank God I was slim/underweight to start with because otherwise I’d be horribly fat now - I’ve gained a third of my body weight!

I’m tired ALL the time. Often it’s that bone-tiredness you get when you have flu and sometimes it’s mental fogginess even if my body’s OK. If I hadn’t been healthy before maybe I wouldn’t realise how bad this is.

One of the worst things is my speech - I can speak well most of the time but quite often my voice goes horribly quiet and/or slurry. I used to teach pronunciation as a speciality (I teach EFL) but I’ve had to stop that for a while because I just can’t do it any more. I used to be able to say tongue-twisters as easily as normal speech and now normal speech sometimes trips me up. “Bibliography,” for example, is impossible for me to say because I just don’t have that much control over my lips. I kinda sound like a Spanish speaker when I say the letter B, because you have to turn your lips towards each other to produce an English B, and I rarely can.

I also can’t open my mouth very wide or smile properly. I looked pissed off all the time.

Some of my doctors have been good, some not so much. My complaints are not huge, TBH. MY cardiologists have been amazing and I actually think the heart problems are probably solved! I have a home heart-rate measurer and I rarely get over 90 these days whereas before it was regularly 120-150bpm.

Plus getting to see bits of my heart burnt out on video was kinda cool.

Elemonopy (good name, btw!) I share your wish for a Dr House, but absent him I really hope you get some decent doctors who actually read your reports. It’s remarkable how much difference a good doctor can make. They’re not miracle workers and can’t fix everything but what they can do, when they’ve actually read your notes and want to help, is amazing.

12

I don’t have anything that I know of that’s wrong with me that’s not well-managed.

But a couple of weeks ago I did get a $9300 bill from the orthopedic surgeon who did the emergency knee surgery on me last January (2014).

Turns out that my not-so-awesome insurance company is playing dumb-ass games and trying to deny paying a reasonable amount of money (insurance only wants to pay $800 for a major knee surgery) because the surgeon isn’t in-network. All this, despite the fact that the hospital was in-network and so was everything else.

I ended up calling the surgeon to find out why I was getting such a huge bill so far removed from the actual date of service. The surgeon’s office said that they weren’t trying to bill me- they sent the bill by mistake, and that they’re actually filing a complaint with the state insurance commission about my insurance company’s intractability on this.

I’m not entirely convinced that I didn’t just call the surgeon’s hand on some bullshit balance billing scheme of theirs, but knowing how much of a pain in the ass my insurance company can be (for example, they make me confirm that I or my dependents have no other insurance that we can use every time before they have to pay some sort of high dollar claim), I wouldn’t be surprised if it was the insurance company being obstructionist pains in the ass.

(in case you’re wondering, the company’s name starts with “Human” and ends with an “A”)

13

Is the cardiologist in-network this year?

And have you met your deductible?

14

Highmark and UPMC are fighting about the situation, with the state of Pennsylvania monitoring. I’m sick of their situation, and do not think I have any kind of yearly deductible.

15

Well today’s medical care is significantly better than what you would have gotten 150 years ago. Blood-letting, humors on the brain, leeches, poultices, etc.

Because there have been so many advances, people come to expect complete understanding by the medical profession. There’s so much about the human body, especially the brain that is not even close to being understood, maybe the dissatisfaction comes from an expectation that’s not realistic.

16

Affordable, nonetheless.

17

After 13 years with the same PCP, my employer changed insurance and I had to say goodbye to her, as she’s not in the new insurance network and I can’t afford the PPO option. Haven’t met my new doctor/group yet, but I’ll have to soon for a refill of the one medication I’m on.

I’m hoping this is not an HMO of which horror stories are made. I’ve heard quite a few, but my last HMO was great so I’m trying to stay optimistic.

18

You know what pisses me off about Doctors and Insurance companies? Some docs won’t join networks, so they can bill outrageous fees. Then one or two things happen: they get the standard out-of-network payment, then either badger the insurance company or the victim, I mean patient, for the balance. If these fail, they can show they made an effort to collect, then write the balance off as bad debt to lower their tax liability. Its all a fucking game, and winds up screwing innocent people quite often. The fuckers should just charge a fair (and equal) price the first time around.

They charge different fees for the same procedures depending on how you pay. Have insurance? Fine. They fuck you insurance company! Charge the fuck out of them. Pay cash? Fine. They offer you a big discount to get you to do the procedure.

Try asking them to bill your insurance company the cash rate to keep premiums low and watch them piss their pants laughing. Its legal theft, or extortion or whatever the proper term is, but its bullshit and should not be allowed.

:mad:

19

My gripe is minor compared to those upthread, but it’s having a significant effect on my life.

I have plantar fasciitis, and it doesn’t seem to be going away despite boots, nsaid ointment, and stretching.

The plantar fasciitis makes me unwilling to exercise, at least the walking and running that I used to do. The pain afterwards is pretty bad.

So I gain weight from lack of exercise. The weight gain saps my strength, and I have no energy to prepare salad-y meals at the end of a long workday like I should.

Not good.

20

This is awfully trivial compared to the other situations in this thread, but it’s bugging the crap out of me so here goes. I tripped over a curb thing as I was walking through a parking lot nearly two months ago. As this happened, I first pulled my knee (my foot was caught on the curb and the rest of my body kept moving forward), then both slammed the knee bones together AND twisted my knee when I finally pulled my foot free. There seems to be NOTHING in my knee that isn’t injured as a result of this stunt, but the doc told me he doesn’t think there’s anything broken or separated, just a bunch of stuff - muscles, tendons and ligaments - that are badly strained. So he told me to rest it, wear a brace if I thought that helped and take ibuprofen as needed.

Well. That conversation was well over a month ago, and the injury itself occurred 8 weeks ago, and I still can’t bend my knee without multiple pain points. I walk with a pronounced limp, I can’t climb stairs normally, I can’t even bend over - some ligament gets painfully stretched. Of course I can’t run or ride my bike - I can barely walk the dogs for pete’s sake. I’m so fucking tired of this shit, plus I’m worried that this is going to be one of those things that triggers other bad shit, especially since I can’t exercise.

And all of this from tripping. If I assume a relatively even rate of healing, based on the “improvement” in the first 8 weeks since the injury, I’m going to be impaired for well over a YEAR. I am not a patient patient. I want my All Better right NOW, dammit.