Possible misdiagnosis, paralysis - second opinion in the US?

March 30, 2015 6:41 AM

I have a friend (living in the US) who's been affected by a puzzling case of right-body paralysis out of nowhere. 4 months into physical therapy, I'm afraid she's been misdiagnosed and we both want to fight for second opinion. How can it be done?

An overseas friend of mine who lives in the US has been affected by sudden, mysterious paralysis of right side of her body.

There's a possible link to recent outbreak of enterovirus D-68 in the US that causes people, especially younger kids to suddenly become paralyzed - but her medical team insists on the first diagnosis of conversion disorder, a psychiatric condition. The recent bout of similar cases has been described in medical publications and many online sources, like this. There's more than 100 similar cases in North America now.

The currently is no cure for this condition, but not receiving correct diagnosis is going to degrade the chances of eventual recovery even further.

I'm definitely not a medical professional, but it seems her medical team is not fully informed about other possible causes of this, and I'm not trusting them fully due to the first medical treatment at the hospital she went to after experiencing breathing problems being... awful. They tried to diagnose her with bi-polar disorder, which she does not have, along with plenty of other less than great decision handling, making for an awful, stressful experience. Since then she's transferred from one hospital to another several times but the base diagnosis remains the same.

Physical therapy has been helping with recovering some control over her right-side limbs, but she's still very much disabled. The treatment has been going on for nearly 4 months now, and she's about to quit receiving therapy due to not responding well to the treatment - and is about to be transferred from physical therapy center to psychiatric unit again.

I am afraid she's been misdiagnosed, and is not receiving the correct treatment. I'm lost on what are the options there, since I've never had any experience with the American medical system and insurance companies calling the shots on what treatment gets received.
What's the best way to go about this?

posted by 9080 to Health & Fitness (6 answers total)

Second opinions are generally covered by US medical insurance. To get one authorized, she should call her insurance company and find out how to get a second opinion authorized, and then visit a doctor or clinic that is completely unassociated with the ones she has been seeing so far.
posted by beagle at 6:55 AM on March 30, 2015 [1 favorite]

You mention that she's been to several hospitals. I know that a diagnosis can often follow you around. Does she feel that she is being re-evaluated when she is admitted to each of these hospitals? Or is it just "X Hospital sent her over with bipolar disorder?"
posted by kuanes at 8:12 AM on March 30, 2015 [1 favorite]

I find it weird that the medical team would immediately jump to a psychiatric cause rather than a physical one. Does your friend have other mental health issues that could have (fairly or unfairly) biased them?

Do you know if your friend has had any imaging studies done, to look for a physical source of the paralysis? CT scan, MRI, x-rays?

Finally - is this an RL friend you know well, or an online friend you've never met in person? Does your friend have any other friends or family with her while all this is going on? Could any of them advocate for her with the medical team in person? Why does she need someone overseas to help her get a second opinion? I apologize if these questions seem rude, and they may be entirely off base. I'm asking because you've rung some alarm bells with me, based on prior experience with an online "friend" who suffered for years from non-existent brain cancer at my great expense in terms of gifts and worry.
posted by kythuen at 8:25 AM on March 30, 2015 [2 favorites]

Response by poster: She's an online friend I've known for many years and spent *a lot* of time conversing with and supporting each other, so I think it's safe to say we know each other very well. She's lacking support from her own family unfortunately. I've called her hospitals myself numeral times, and she's indeed there, so I don't doubt her condition being real.

No mental health issues, apart from depression that comes and goes. If I recall correctly, a MRI scan was done and found nothing. I need to clarify that with her.

I've not heard about them re-evaluating her at all. Most hospitals don't want to take her in too, which has been a source of great frustration.

Thanks for the responses so far!
posted by 9080 at 8:38 AM on March 30, 2015

You really, really should not be telling an internet person that they don't have a mental health issue that a doctor's diagnosed. Second opinions, great, but it's dangerous to just dismiss that someone might have a particular disorder just because they seem fine. Lots of psychiatric problems have physical symptoms; the problems aren't less serious or less real. Conversion disorder, the whole point of it is that it's NOT just malingering. It's a real thing that deserves to be treated seriously.

I'd always encourage someone to seek second opinions, especially if the current treatment's not working out well, but there's an undercurrent here that "she's not crazy", and that's not how real mental health treatment works. It's not a value judgment, and it's best not to approach this like one diagnosis is better than the other.
posted by Sequence at 9:18 AM on March 30, 2015 [3 favorites]

Best answer: I agree that the best bet here is to call her insurance and ask them about the procedure for obtaining a second opinion. Another option, if your friend can swing it, is simply to make an appointment with an unaffiliated doctor and pay for it out of pocket. Obviously this could be expensive, and so depends on her circumstances.

I also think it's important here to reframe this a bit. The insurance company isn't forcing her to receive one treatment or another, but rather saying they will not pay for unspecified treatments that are unconnected to any diagnosis (and it's not clear here what your friend thinks those treatments would even be). The insurance company is certainly not forcing her to be transferred to a psychiatric unit against her will. There is the possibility that there's some sort of involuntary committment situation going on here, but that's typically very difficult to obtain in the U.S. and would be done by the family or maybe law enforcement, but not an insurance company. If that is the case, I would probably suspect there's something going on here that your friend is not telling you about (i.e. it's usually only possible for people to do this if there's some very serious risk of self-harm/suicide or violence toward othgers). If your friend doesn't want to be transferred, most likely she can check herself out of the hospital and refuse treatment while pursuing other options.

I agree that some sort of local support is needed. Really, at most someone who is assisting from afar can help with research (i.e. perhaps calling the insurance company or researching possible doctors to provide a second opinion) and emotional support. If your friend is seriously disabled, even temporarily, she will likely need help getting to appointments, caring for herself, etc. I would push her to work her local support network as much as possible.

Finally, I'm not so clear on why you and your friend are rejecting the doctor's diagnosis, other than that she just doesn't like it. The lack of instant, immediate recovery is not actually evidence that a diagnosis was wrong, and it sounds like your friend is recovering, albeit slower than she might like. Frankly, suspecting that the doctors are wrong because really your friend has an exceedingly rare (100 cases in the entire U.S.!) childhoold illness, somehow contracted as an adult, is possible but really, really unlikely. It makes me think you guys are reaching for absolutely any alternate explanation, not because you have a solid basis in evidence to do so, but rather because the current diagnosis is scary, hard, and plays into all sorts of societal stigma about mental health. That's not to say you shouldn't go for a second opinion -- it doesn't hurt to explore all options. But it also might be wise for both of you to figure out why the current diagnosis is so hard to bear, and whether there are real, evidence-based reasons why it might be wrong.
posted by rainbowbrite at 10:09 AM on March 30, 2015 [7 favorites]