I hope that I can be able to whistle again
I hope that I can be able to whistle again
After Leontiasis had disfigured my face, it affected my ability to speak coherently and drink my beverages and eat my food upright because I can't close my lips which is why I would lay down on my back so that I will not throw food out from my mouth while chewing. Leontiasis is a very rare condition and it is too horrid that I even do not want to google it.
You can't imagine the level of hardships that I went through because even my nurses mocks the way I speak, I just tried to ignore them and keep it to myself for the fear that it will affect my dialysis quality because they control the way I would live my life, so thankfully they still have a level of professionalism in them.
The overgrowth of bone in my face/mouth had given me some fear that I thought at first it will not abate but make me a horrible sub-human being. I was thinking of mal-transforming to the "Elephant man" but thanks to God a million times I was able to afford a correct doctor for my condition to treat me with the correct drug to take.
Don't Google "Elephant man"
Taking Cinacalcet, an anti-hyperparathyroid for more than two years made my facial bone overgrowth resulted the bone inside to recede a bit particularly in the mouth area making me take back the ability to speak coherently again.
I just have to stop taking Cinacalcet because I cannot endure its side-effects anymore like vertigo and appetiteloss which now I cannot regain for some reason anymore. But with a stroke of the sweetest luck ever I am able to treat my bone issues with vitamin k2 Mk-7 which made more improvement compared to taking Cincalcet.
My facial bone is continuing to recede from having a three finger thick wide gap to now about only a finger-wide gap with my mouth when in a relaxed mode. Now I am hoping that God wills it for me to get some more improvements.
I was waiting now for my lips to fully close with a relaxed mouth like a normal person if that will ever happen in the near or mid-future. Then I will be able to whistle again like Axl Rose in the song Patience by Guns 'n Roses.
I can imitate how Axl Rose whistles in this song and I missed that gift a lot because you know not all people can whistle. It was my eldest brother that had taught me how to whistle when I was just little, I mean just before this house was built from 1983, later I was already whistling on my own especially when i am stressed or maybe in the bathroom, it is a good stress reliever.
But after my facial disfigurement it went away and frustrated me a lot if you can imagine. Now the question of if I ever regain back my gift of whistling is up for the time to reveal. But one this is for sure if I that would happen then I am already in a better state of health compared when I once was and I will thank God for that miracle today.
I am optimistic if I can still see an ember hope twenty million light years away, I just needed more time.
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Hi! May I ask what kind of doctor treats you for your leontiasis?
Endocrinologist. Prescribed me Cinacalcet.
But now I am just taking Calcium with meals and Vitamin D3 2,000 IU daily plus Vitamin K2 MK-7 and it improved my bone pains so significantly.
So is it possible that the growth of bone in your face will recede and go back to normal? I'm filipino and I think we have the same condition but I don't want to add more burden to my family by going to doctors.. Paying for my dialysis is heavy enough for them.. Hope you can give me advices how to manage this. I also have scoliosis which make everything so much harder.. I broke my hip too 4 years ago... So far now I'm fine. But we both know it's not always fine given our situation 😔
I had a ton of pain issues before, that lingering back pain, hip joint pain, rib pain, knee pain, tailbone pain, feet joints pain, neck pain. But my facial overgrowth receded a bit after taking cinacalcet for about two years, but we can never get back to our normal appearance.
The overgrowth inside my mouth was reduced which is why I can speak again to people and they can understand what I am trying to say unlike when the overgrowth had gotten so big that I cannot close my mouth which is why my speech got affected as well as the way I eat and drink, I spent a year or so eating and dinking laying down and at the same time having so much pain all over my body.
Cinacalcet had done great, it is the drug for Leontiasis but it is very expensive and will give you nausea and a nasty vertigo from only one tablet and I was prescribed two tablets to take everyday. I quit taking it because of the side-effects and because of the price of Cinacalcet and the fact that it didn't fully solved my body pains even though my bone overgrowth receded a bit and improved my back pain but not fully.
So what I did was to take Vitamin K2 MK-7 along with Calcium and Vitamin D3 and controlling my diet by not eating food and drinks with Phosphates. the 3 in 1 coffee for example is high in Phosphates as well as all powdered drinks, Milk and milk products, almost all packaged foods and fast food fries and meats have added phosphates to protect their quality.
We have to control our Phosphate/phosphorus levels into normal levels otherwise it will make the Parathyroid into hyperactivity and will in turn signal the bones to leach or throw out Calcium from our bones and to the bloodstream and thus causing calcifying smooth muscle tissues like the heart valve too, the lungs, and some parts of the skin and then causing pain in the feet, backbone, ribs, neck, and any joints because the bone gets weaker and weaker. I have scoliosis too in two places, in my neck and the upper backbone part.
The function of Vitamin K2 MK-7 is to make the bone to absorb Calcium, it worked for me and alleviated my body pain a great deal. So my advice is for you to try it, it works better than Cinacalcet, but you still have to take Calcium with meals and one softgel vitamin D3 2,000 IU per day, you will notice a big difference after a few days.
And then totally control your diet avoiding foods and drinks high in phosphates and or Phosphorus.
May God bless you too.
I'm taking caltrate plus. I think it's doing its job well. Thank u for your advice. I hope we get better.
Surely you will someday