Recent comments in /f/InternetIsBeautiful

TheSpanxxx t1_iuvw6dd wrote

Reply to When I was 32, I was told that my bones were like that of an 80 year old. I have built a web application to track bone health and monitor treatments for those like me. No sign-up, No personal data collected, Completely Free and Open-Source. by Abishek_Muthian

My dad, now 76, was about 38 when he started having severe pains wracking his body. After more than a year of visiting doctors to look for an explanation he finally visited Mayo clinic and saw specialists. They did many tests and were able to discern he had an incredibly rare (as in less than 20 studied cases in the world at the time, rare) disorder with comorbidities that complicated his issues even further.

He's not had a great life physically, sadly. He tried, but his body has failed in so many ways it's hard to describe. But, he was able to receive treatment and have a life. Physically, he is miserable but he is still here and he can do a few things so he keeps plugging away.

I'm sorry to hear about your diagnosis and disease at such an early age. Do everything you can to fight it! And this application you are promoting could help change lives. Keep at it!

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Abishek_Muthian OP t1_iuvuukj wrote

Reply to comment by newwriter365 in When I was 32, I was told that my bones were like that of an 80 year old. I have built a web application to track bone health and monitor treatments for those like me. No sign-up, No personal data collected, Completely Free and Open-Source. by Abishek_Muthian

I know the feeling mate, But we might have to fight the battle for others around us or at least as a middle finger to the indifferent universe which is always trying to kill us.

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Balmerhippie t1_iuvuge8 wrote

Reply to comment by Abishek_Muthian in When I was 32, I was told that my bones were like that of an 80 year old. I have built a web application to track bone health and monitor treatments for those like me. No sign-up, No personal data collected, Completely Free and Open-Source. by Abishek_Muthian

She had the para removed. There was a Dr at Emery that specialized in that surgery.

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Don't assume. My wife self diagnosed, asked for pertinent tests, declined the standard treatment and foudgnd this surgeon in another state. Her symptom was high calcium in her blood.

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She still takes meds for the bone loss.

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Abishek_Muthian OP t1_iuvua1y wrote

Reply to comment by lyinghorizontally in When I was 32, I was told that my bones were like that of an 80 year old. I have built a web application to track bone health and monitor treatments for those like me. No sign-up, No personal data collected, Completely Free and Open-Source. by Abishek_Muthian

Thank you for those resources, I'm in India but it would help others from US here.

What triggered you to get diagnosed for HPP?

Edit: Typo

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newwriter365 t1_iuvu3jm wrote

Reply to comment by Abishek_Muthian in When I was 32, I was told that my bones were like that of an 80 year old. I have built a web application to track bone health and monitor treatments for those like me. No sign-up, No personal data collected, Completely Free and Open-Source. by Abishek_Muthian

Yeah, I know the history of the step count, but impact exercise was supposed to stave off osteoporosis.

My body consistently finds ways to screw with me. I'm sick and tired of the battle.

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Abishek_Muthian OP t1_iuvtssx wrote

Reply to comment by Balmerhippie in When I was 32, I was told that my bones were like that of an 80 year old. I have built a web application to track bone health and monitor treatments for those like me. No sign-up, No personal data collected, Completely Free and Open-Source. by Abishek_Muthian

I presume it was tested among several other tests I had but I will have to get it tested again.

Does your wife take treatments for both Parathyroid and Osteoporosis now?

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lyinghorizontally t1_iuvk4v6 wrote

Reply to comment by Abishek_Muthian in When I was 32, I was told that my bones were like that of an 80 year old. I have built a web application to track bone health and monitor treatments for those like me. No sign-up, No personal data collected, Completely Free and Open-Source. by Abishek_Muthian

Thanks for the kind words and I hope I can bring about awareness. I went through the process of getting diagnosed myself not long ago. There are a few groups on Facebook, if you search for Softbones or Hypophosphatasia, that have a really great community. There are many people on there that say they've been diagnosed with osteoporosis, but it's actually hpp. I haven't had Dexa scanning done yet, but when I do I'll be sure to come back and use your site. If you have any questions let me know and I can try and help in any way.

If you're located in the US, https://www.invitae.com/en offers generic testing and even has a free program to test you for this. https://www.invitae.com/en/discover-dysplasias/

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Abishek_Muthian OP t1_iuvilob wrote

Reply to comment by TheBirminghamBear in When I was 32, I was told that my bones were like that of an 80 year old. I have built a web application to track bone health and monitor treatments for those like me. No sign-up, No personal data collected, Completely Free and Open-Source. by Abishek_Muthian

I was diagnosed with Vitamin-D deficiency when I was a child and I took supplements.

Now the Vitamin-D is at normal levels in-spite of osteoporosis, Likely because of the Alpha D3 supplements.

Doctor did say that my calcium absorption is low, But no investigation was done to why. Vitamin D supplements seems to be a standard course of action.

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Abishek_Muthian OP t1_iuvih9z wrote

Reply to comment by newwriter365 in When I was 32, I was told that my bones were like that of an 80 year old. I have built a web application to track bone health and monitor treatments for those like me. No sign-up, No personal data collected, Completely Free and Open-Source. by Abishek_Muthian

I'm sorry, But 10,000 steps/day is actually a scam; It was a marketing tactic by the first step counter companies.

Consider using Bone Health Tracker for tracking the progress of your treatments.

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Abishek_Muthian OP t1_iuvib5s wrote

Reply to comment by gbraide in When I was 32, I was told that my bones were like that of an 80 year old. I have built a web application to track bone health and monitor treatments for those like me. No sign-up, No personal data collected, Completely Free and Open-Source. by Abishek_Muthian

Thank you very much, I will add support for that extra data with you can share the assessment section with me, I will message you in the chat later. The BMD report specs seem to change a bit with different countries, Although I have included all major bone sites from my research.

As for your condition, I believe your doctors have come to a conclusion that calcium intake could fix it before trying out the steroids; The tests are only done annually and I see only minor improvements with my osteoporosis but some decent improvements with osteopenia over past 5 years with steroids.

But steroids would like have side effects in the long run and so calcium+exercise seems like the best bet for your Osteopenia and likely what the doctors think too. You'll see a change next year.

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Abishek_Muthian OP t1_iuvh6cb wrote

Reply to comment by TRLK9802 in When I was 32, I was told that my bones were like that of an 80 year old. I have built a web application to track bone health and monitor treatments for those like me. No sign-up, No personal data collected, Completely Free and Open-Source. by Abishek_Muthian

I assume my thyroids were tested as part of my other tests previously, But I have to test again.

Were you diagnosed with Osteoporosis? Btw, There are no doubts that I have brittle bones as I've explained in other comments due to my fractures and the surgeries I had to undergo to fix them.

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gbraide t1_iuvg3ci wrote

Reply to comment by Abishek_Muthian in When I was 32, I was told that my bones were like that of an 80 year old. I have built a web application to track bone health and monitor treatments for those like me. No sign-up, No personal data collected, Completely Free and Open-Source. by Abishek_Muthian

Thanks, I uploaded my data. My scan gave me extra information not required by your site for the femur, I have been given alongside the neck, troch & shaft. Not sure if that data is useful.

I can only speak from my viewpoint of a white British male that every bit of research I found, medical paper, support network seemed to be centred around the elderly or menopausal women. The health service here in the UK is fantastic however stretched to the limit in funding. Something "frivolous" such as a dexa scan is so low down on their services that I had to persistently request something to find out what has gone on. I am taking over the counter calcium tablets (recommended by a UK charity - royal osteoporosis society), upped my calcium intake, started strength training to load up my bones but not given a great deal further. I have seen talk of hormone levels have some impact on this but again I feel I will be given short shrift on this by my doctors. It has been a year since my break and they have booked an appointment to see me in a couple of weeks. Are there other avenues that I should be pushing for?

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gbraide t1_iuvfbjo wrote

Reply to comment by AndrewFGleich in When I was 32, I was told that my bones were like that of an 80 year old. I have built a web application to track bone health and monitor treatments for those like me. No sign-up, No personal data collected, Completely Free and Open-Source. by Abishek_Muthian

Thank you. I actually broke the femur neck during the run. I was in a bit of pain, but you learn to run with the odd bit of discomfort so for whatever reason managed to drag myself around the remaining 6 miles of the course. I think that was later diagnosed as pure stupidity. About an hour after finishing I was unable to support myself so I had to go to hospital. Despite all of this I was adament that it was a muscular problem because surely you can't walk after breaking a femur. How is your running going now?

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TheBirminghamBear t1_iuva85n wrote

Reply to comment by Abishek_Muthian in When I was 32, I was told that my bones were like that of an 80 year old. I have built a web application to track bone health and monitor treatments for those like me. No sign-up, No personal data collected, Completely Free and Open-Source. by Abishek_Muthian

Only asking because another individual I know is in a similar bot - have they checked vitamim D levels? Very low vitamin D levels can cause poor calcium absorption and bone densities.

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cwchabria t1_iuv9v8c wrote

Reply to comment by Abishek_Muthian in When I was 32, I was told that my bones were like that of an 80 year old. I have built a web application to track bone health and monitor treatments for those like me. No sign-up, No personal data collected, Completely Free and Open-Source. by Abishek_Muthian

Have you tried Osteostrong? A doctor developed it due to his mother being diagnosed with osteoporosis. It helps build bone strength and density.

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AcceptablePassenger6 t1_iuv8dyp wrote

Reply to When I was 32, I was told that my bones were like that of an 80 year old. I have built a web application to track bone health and monitor treatments for those like me. No sign-up, No personal data collected, Completely Free and Open-Source. by Abishek_Muthian

Are you planning to sell this data or the ML algorithm after its been fine tuned? Medtech will pay you alot for it and I doubt you'll walk away from that paycheck...

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TRLK9802 t1_iuv7be5 wrote

Reply to When I was 32, I was told that my bones were like that of an 80 year old. I have built a web application to track bone health and monitor treatments for those like me. No sign-up, No personal data collected, Completely Free and Open-Source. by Abishek_Muthian

Have you been tested for hyperparathyroidism? I've suffered from this condition and it was very hard to get a diagnosis because my calcium wasn't very high. I had done my research and was convinced of my diagnosis; I went to over a dozen doctors before I was offered surgery and I ended up having to travel over 1000 miles from home. I was 32-33 years old when this happened.

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