Hi, I'm new to the forum. I found it while googling information for MBPS and I'm happy I did. These stories that you've shared have been very validating and interesting and I'm super grateful that you all had the courage to be vulnerable and share your experiences.
One of my friends died yesterday and I'm really wanting some kind of closure as to what truly happened to her. It's absolutely impossible to REALLY know, but I feel as though me trying to find out anyway is a part of my own grieving process. I suspect that my friend was a victim of MBPS and I'd be so grateful if any of you could share your perspectives on this matter or some insight.
My friend was 22 years old. When she was a teenager she had problems with Crohns, but it was manageable as far as I understand. She seemed healthy whenever I was with her but I know she had flare ups and somewhat frequent hospital visits. When she left home for college (a few hours away from her family), she became sick and returned home. She's the youngest in the family so you can imagine that her leaving the nest was difficulty for mom, who she was very close to. When she came home she was hospitalized and told us that they thought it was meningitis. She told us she had two spinal taps, one of which went poorly and therefore required additional treatment. She became very weak and was in and out of the hospital frequently but there was a lot of vagueness as to what was actually wrong. Her mom was with her constantly during this time. Her parents were together but dad was not involved in her medical care. At this time, her mysterious sickness did not seem lethal or anything but she was not really getting better. My best friend and I discussed things with said best friend's dad, who is a doctor, and he was curious as to whether or not this was MBP. The mom would call him regularly asking for his opinion and would often discredit and talk poorly about the doctors and nurses they were seeing. Eventually my best friend's dad refused to speak with her anymore because it was pointless and the mom was not receptive to anything he said anyway. My sick friend and her mom complained nonstop about the medical staff. I think that her mom was convincing her that they weren't doing a sufficient job, though they were trying. She continued to be in and out of the childrens hospital until the hospital put into her record that her mother was telling her to fake symptoms. They refused to continue treating her. This was an enormous ordeal and my sick friend expressed how pissed she was that they would dare think that something like that was going on. As a side note.. my friend was taking pills recreationally in college before she got sick and came home. My best friend's dad suspected that she potentially had an addiction to pain killers that reinforced her hospitalizations.
Anyway, since the hospital refused to continue treating her, my friend and her mom traveled out of state for specialized treatments. These were always super vague and we never really understood what was actually wrong with her or why she was receiving certain treatments. We would hear random reports about our friend being abruptly hospitalized while in another state because, according to her mom, she was having seizures. It seemed to us like things were getting really bad. They eventually moved to Florida and had been there for several years before she died yesterday. Her mom moved with her but her father stayed in their family home. Mom was with her through every step of this but her father seemed really uninvolved even when things became serious. My friend received various treatments in Florida and it was decided that part of her illness resulted from Complex Regional Pain Syndrome, but that wouldn't account for her being critically ill if I understand it correctly. She was in immense pain the majority of the time but the doctors scrambled to find the cause and to find successful treatments. Other than her CRPS, there were no diagnoses put on what was wrong with her even though she was becoming severely ill. She ended up moving into an assisted living facility, then went back to the hospital, and then they thought she was going to die a handful of months ago so she started using hospice and stopped treatments, saying they ran out of options. And then abruptly she started having treatments again as if something had changed, but this was unclear of course. I honestly have very little idea as to what these "treatments" consisted of. We would text back and forth and she would give me some detail as to what she was having done, but it was still very vague and confusing and didn't seem to make sense. After beginning treatment again, she seemed to stabilize. Three days ago she posted on fb that she had a blood transfusion that went well. And then she didn't post anything until her father posted on Saturday that she had passed away peacefully. I've heard from a mutual friend that my friend's mom reported that she had a seizure and was unresponsive when she came out of it and that's how she died. But I have no idea what triggered the seizure or how it killed her. Everything is VERY vague at this point.
As another side note, my friend had two older brothers, one of which at least I know had health issues when he was younger. Both brothers were moved out of the house (married, in college, etc) when my friend had left for college and then became sick, having to return home to mom. My friend and her mom also denied seeing therapists throughout this entire ordeal, which I suggested several times because I'm in the counseling field and know that a young, chronically sick girl probably needs some freaking support. Obviously there is stigma around going to therapy, but she was essentially dying and so one might think that the stigma would be irrelevant.
Do you guys think this was MBPS? Either it was or my friend had an illness that multiple doctors in multiple states did not understand and could not treat successfully. That's definitely not impossible, as we have so much to learn still about medicine and the world. But the entire thing just seems so sketchy. Like I said before, I understand that I'll never TRULY know what happened now that she's passed. I'm just seeking either some validation that my suspicions might be correct or perhaps some hope that my friend wasn't essentially killed by her mother.
If I remember anything else about her story that's insightful, I'll add it in. But this is everything I can recall for now. If you've read this whole thing, I'm very grateful for that alone. Any insight would be amazing.