Dear Lisanne,
My symptoms and history showed evdicnce of HPP ( hypophospatasia) which has similar charaterististc to other genetic connective tissue defects; therefore I took a genetic test coverign many general sketetal dysplasias. I have clinical indications of conncetive tissue disorder and HPP but genetic tests ( which have some limitations) indicated a different disorder - of unknown significance. I have a history of nutritinal defeciencies and high homocysteine. Homosycteine is correlated with increased risk of fracture and I have fratured many bones in my adult life - so tha t is part of my story and its rebalance is part of my healing. We all need to find out what is out of balance and correct it so the body can heal. After my original diagnosis, i dscovered I had high vit D, high urine cal and had been drinking bad water ( water softener water chemicals were causing havoc in my system - I had to start drinking spring water) had to balance these issues - it is a process for me and I pray Im getting to the point where I am regaining and beginning to build. I am concerned about the meds that must follow Tymlos - but I feel I can sort through and make the best possible choice for the best outcome. I pray you too find good guidance and path to recovery.
I was worried about HPP when I started to research recurrent slow to heal metatarsal fractures. I do have low ALP but my B6 and PEA were normal. They would not give me the genetic test. I am so sorry for all of your fractures. I do hope that you are on your way to finding the best treatment for the long term. How will you decide what to take next?