How is it possible that 3 US hospitals can not diagnose a previously healthy 18 year old girl who is now so ill that she is fighting for her life?

Link, please?

There is no link. This is someone that I know.

Is this a House episode?

No, this isn’t a television show or a new story. This is someone that I know, personally.

@ANef_is_Enuf My heart aches for your friend, I hope she gets some answers soon. :(

Stuff like this definitely still happens. I hear about people not getting proper diagnoses for years. Sometimes things just aren’t clear cut. :(

@ANef_is_Enuf Edit: nm

United States. Ohio, specifically. Right now she is at the Cleveland Clinic, where she has been off and on for the last month or so. In critical condition for the last week. Cleveland Clinic is ranked as one of the best hospitals in the country.

@ANef_is_Enuf Hmm. So, can she hunt down a real live House?

@MyNewtBoobs my sister is an obsessive House fan, and she has been saying the same thing all week.

Many years ago a family friend had health problems for a couple of years, the cause was a mystery before someone figured out it was (if I recall correctly) diabetes.

Her husband is a doctor.

Going to ask to move this to social, so no one gets modded.

@ANef_is_Enuf That is a fabulous hospital. That’s where I’m getting my surgery – I’ll be there too in a couple of days! They’ll sort her out, I swear it.

@Mariah I’ll bring you flowers if I’m around.

I’ve always had the utmost respect for Cleveland Clinic, and I still do. I just find it shocking that a young, athletic girl can go from perfectly healthy, to literally fighting to live… and three US hospitals are unable to figure out why. I really didn’t know this sort of thing happened. Is it strange that I’m shocked to learn this?

Was there an eventual diagnosis?

@gailcalled no, she has not been diagnosed. Her condition continues to worsen as they try different therapies and treatments.

@ANef_is_Enuf Oh my goodness, that’s so kind, but please don’t bother! Tend to your friend.

It is not strange to be shocked by it. You expect to get answers from doctors. It sucks majorly when they can’t provide. :( The human body is so complex, medicine is anything but an exact science.

@ANef_is_Enuf: I am really sorry. It sounds dreadful. I hope for that she turns the corner soon.

Diagnostics is an art, not a science. This is why House was such a popular series. I will pray for your friend that they will find the source of her illness soon.

Medicine isn’t as great as we think. Some people don’t fit any knowledge we have so far. It’s the beauty and tragedy of the human condition, mutation, so to speak.

I’m really sorry such a young person is so sick. There are so many bizarre diseases that show up once in a doctor’s lifetime. I took care of a young man who died from bowel tissue death. Nothing showed on xrays but he was in extreme abdominal pain. I can remember thinking they should just cut him from nape to groin and have a look; I don’t know why they didn’t.

I don’t know, how have seven doctors (all of them considered incredibly good and specialists in her specific kind of cancer) in a row mismanaged my mother’s cancer treatments?

People are fallible, doctors are fallible.

A good reputation doesn’t guarantee a fucking thing.

What are her symptoms? Clearly, she’s very ill. But what is going on with her?

Shockingly enough, there are still a ton of things we don’t know and/or can’t explain….

She has been seeing various doctors for the last several months for stomachaches that didn’t appear to have a cause, they kept sending her home without any real answers.
A few weeks ago her doctor found a paravertebral abscess that went the entire length of her spine, she was hospitalized here, and ultimately transferred to Cleveland Clinic to have it surgically aspirated. The surgery went well, they put her on medication and sent her home after about a week.
Her follow up bloodwork last week showed some abnormalities, and they hospitalized her again, to find that she was in renal failure. They took her off of antibiotics, suspecting that was behind the kidney issues, but the kidneys have not improved and they began dialysis. In the meanwhile, they have tried several different antibiotics, but her temperature remains above 101F, and her blood pressure is all over the charts. Over the course of the last week, despite dialysis, her lungs are full of fluid and she has developed pneumonia. She is on max oxygen, but still struggling to breathe. She also has an itchy, burning red rash all over her body that continues to spread. They still have not determined the cause of the abscess, although clearly it is/was a bacterial infection. As an aside, and presumably related to the infection, she has large masses in her stomach. They have ruled out lymphoma. She has been drifting in and out of consciousness for a few days, but has had a lot of fully lucid time, as well.

I think that covers most of it.

…Oh, wait, no. I forgot about the pulmonary embolism and internal bleeding after treatment. I think that is everything now, though.

Look at it like this: Aspergers Syndrome was studied a little bit in the 1940s by Dr. Hans Asperger, but it did not make the DSM IV until 1994 (a full fifty years later) and even those doctors who specialize is AS and other forms of Autism cannot reliably diagnose it while general practitioners have virtually no chance of correctly diagnosing it; the best they can do is send the patient to a specialist.

I mention this as just a little insight into how the medical profession deals with uncommon things.

My mom had crazy migraines for ten years. Many different doctors tossed pills at her for well over ten years. Eventually one had a CAT scan done and they discovered a lemon sized tumor in her skull. It was removed and she is fine now and a lot more sane. Here is the question I posted the day she was operated on.

Wow.

This happens all the time sadly. Some of it can be chalked up to medical science simply does not know everything, and some of it is there is still an incredible amount of incompetence out there. Your friend’s case sounds like it is indeed not clear cut. I’m sure they have asked her these things, but I’ll ask anyway:

1. Had she been travelling prior to this?

2. Had she started a new sexual relationship with someone?

3. Did the rash start after starting a new medication? This is a very important question, if it is TENS, which is seen as a reaction to medication it can kill her. Once it goes too far it is basically irreversible. Most doctors are pretty clueless about this. The only doctors and nurses who are really aware about what happens are those who work in burn units, becuase they treat those patients in the end.

4. Were they able to culture the absess? Was it Actinomyeces? A. meyeri or A. Israeli?

1. No.
2. Yes, but, she was not well before she started seeing her new boyfriend.
3. After medication, yes. She seems to be having an adverse reaction to pretty much everything they’ve given her so far.
4. I am unsure about this, and I have been trying to get a definitive answer. Of course they intended to do a culture after surgery, and since they are pushing antibiotics, I have to believe that they determined it to be bacterial. At first they weren’t sure if it was viral.
However, my three main sources of information – her father, her step-mother, and my sister – all say that they don’t actually know anything more about the infection. I don’t know if that is accurate or if they are misunderstanding something.

Thanks for the information about TENS, I will pass it on to the family.

Here is a TENS link. I hope she does not have it.

Which bacteria matters obviously for proper treatment. A. meyerii and other actinomyces take a long time to grow in cultures so they might have given her mega antibiotics like vancomycin which is very hard on the liver and kidneys while they wait for results. Actinomyces is usually successfilly treated with specific types of penicillin when isolated.

She was on vancomycin, they took her off of that. Last I heard they were trying to get the levels down so that they could start a new treatment, and the new medication they put her on started the rash. She isn’t tolerating dialysis well, so it has been a little bit slow going in getting the other medications out of her system.

A coworker of mine had mysterious fevers and absess I think and eventually she controlled it with methotrexate I think? She wound up in the hospital every couple of months on IV antibiotics and then finally a rheumatologist gave her the Methotrexate and it helped stabalize the condition if I remember correctly. I was not very close to her, so I am unclear about the details.

Yeah, vanco is rough on people and only given as last resort or life and death from what I know about it. But, it is not necessarily the cause of the rash. They need to think of all medications started recently, even Tylenol. If she usually takes ibuprofen, she may have no idea she is allergic to Tylenol, something that simple. They probably were treating her fever with some sort of drug outside of the antibiotic, plus pain meds for her discomfort should be questioned.

So sorry to hear about this. Such a horrible ordeal. Scary.

Thank you. It is so hard to stand back and watch this happen to someone that you’ve watched grow up from a little girl, and to be so helpless to do anything for her. I never would have thought that it would take so long to diagnose an issue, let alone treat it. I know that treatments can be sketchy, but this threw me for a real loop. Kind of left me with my jaw hanging open.

Doctors can only be taught so much, and only so many conditions get researchers and funding. Right now, the medical research community is all about cancer, AIDS, and diabetes, which leaves little room for obscure diseases that make you miserable.

What throws me is that the abscess is on her spine. The bacteria I mentioned I think of as abdominal, pulminary, pelvic, or in the mouth, but maybe it can be on the spine too? I have no idea. I just know that bacteria is found in abscesses, not easy to culture, and I think doctors really don’t completely understand what causes the pathalogical process of the condition. The condition is actinomycosis if you want to google it. You will see it can be in various parts of the body. I have only read up on it in the past regarding the GYN track, so I know little about the other parts of the body.

Thanks, looking into it. I think that I will talk with her stepmother tomorrow and find out for sure, too. I have been trying to be pretty central in sharing information with a large group of loved ones on this side, so it will be helpful if I can get everyone on the same page.

I just googled and it can cause abscess on the spine, it is very very rare. It stated in one article it is often not diagnosed correctly, diagnosed in a late stage. But, I realize the chances of me being right are slim, it’s just a remote guess. It isn’t unusual for an abscess to have other bacterias present that also need treatment. From what I have read actinomycosis can be successfully treated with long term antibiotic treatment if by some chance I am right. I am bazzarily right about medical guesses an unusual amount of the time. It’s weird.

Let us know what happens.

Will do. Thanks for all of your input, following remote guesses at least makes me feel more useful than sitting around wringing my hands and crying.

I was just thinking rash can be a symptom of syphilis, and the rash occurs several weeks after the initial infection is acquired, which goes back to my new sexual partner question. The new sexual partner could be the partner before this new boyfriend. However, if it were syphillis I guess the new boy would have caught it too? Which would be a clue to the puzzle. I still think the rash is likely from medication, but it was just a thought. Doctors are amazingly ignorant about STD’s unless they are GYN’s. It’s like they don’t want to know how many people get sick a year from having sex.