I’m 30 something and have a disabling joint disease. My condition has already cut me off from aggressive lifting, which is of great importance to me. Since age 11, exercise has been the love of my life, and this is the first time that I’m unable to engage in anything more than the most embarrassingly conservative forms of exercise. In another few years at this rate, my condition will cut me off from work, which means I will be forced to live off of long-term disability insurance benefits, which won’t be a whole lot, just enough to survive on.
There are two new treatments in existence, mesenchymal stem cells and platelet rich plasma, which can regenerate joints to a degree. Neither of them are covered by insurance, and both are extremely expensive. I’ve had them before, and know they can work, but they aren’t cures, they just help, and there is a potential to botch them by exposing the joints to too much force too soon after. The ultimate limiting factor is the intervertebral discs, which are harder to treat (riskier, more expensive, less evidence of efficacy) than the other joints like the knees, shoulders, etc.
I have already spent $60K+ on treatments with mixed results (first one was successful, second one failed for the reasons above).
I have a liquid net worth of $160K. Enough for a lot of treatment. But, when that money is gone, it’s gone, and I can’t earn it back if I’m disabled. If things stay consistent, I will save $25-$30K in the next 12 months and $40-45K in the 12 months after that.
Treatment option #1 is the most aggressive. This will treat both my synovial joints and discs with both stem cells and platelet rich plasma. It involves spending about $35,000-$40,000 on a stem cell treatment with a clinic that’s breaking federal law by providing the particular form of treatment I need in the US, and I expect the FDA to shut them down this year, so if I do it, I have to do it now. I really want to, but the total cost of this will be about $110,000. There is a chance that this treatment plan could allow me to regain my ability to lift, but it’s a huge unknown. It could extend my working life by an unknown length of time, but there’s no known likelihood that I’d be able to save as much in that time as I’d spend on the treatment. There is also a risk of treatment failure. If I spend that much money and it doesn’t work, I’m fucking heartbroken.
Treatment option #2 is less adventurous, but still goes pretty hard. Platelets in the peripheral joints, and stem cells in the spine. The stem cell treatment will be in the Cayman Islands with a company that does it there legally. It will cost $70K-$80K. I don’t know how much better or worse this will work than #1. Even in the best case scenario, I wouldn’t expect to resume aggressive lifting, because I’d be afraid to destroy the benefit of the procedure if I put too much force on the joints. My goal will be to keep working pain-free and engage in minimal exercise as long as possible.
Treatment option number #3 is to pursue treatment with platelet rich plasma only. I’ll spend about $15,000 to do a whole-body once over with PRP once a year and save/invest the rest. This position accepts the inevitability of disability, and that lifting is over, and the goal of it is to save money for when I’m disabled and have to rely on disability benefits.
This is proving to be an exceedingly hard decision. Thoughts?