That was fantastic! I'm Brazil, doing a master's seminar about Paget's disease, and this presentation helped me a lot! Thank you to Prof. Stuart Ralston, you are brilliant!
Thank you for this info. I have pagets and I’m in very great pain. I live in the United States and it’s not common here so it was hard for me to find a doctor who deals with pagets but I feel like I’m his ginnea pig. He’s learning like I am. I did have an zol acid infusion which helped with pain but am taking a break from infusion cause he saids he doesn’t want my teeth or hair to start falling out. It’s been two years since last infusion and I am starting to feel great great pain. My right hip feels like it’s ready to crack. So uncomfortable I can’t sleep at night.thank you for this info as I’m trying to educate myself about my disease since no one else can tell me about it.😢
I guess I have it, as my xray showed abnormalities and I have family members who have/had very curved legs, too. Is your pain "scoliosis" - like? I have muscle thightness and cracking joints and my knee and my thighs started to hurt a lot, a little like it was "too" big or stiff. I hope you find releave with ur pain.
@@noclue5168 my knees, legs and hip hurt so much it’s hard to walk. I can only walk about 10 minutes if that before I feel like my legs giving up. My skin is so sensitive clothes are starting to be an issue to wear. I finally get to see my doctor on the 15th of April. I started to eat gummies for pain especially to sleep. When I go to bed it hurts the most can’t sleep from pain. My bones hurt my skin hurts. It’s time for another infusion. I feel for pagets people I’m sorry you’re going through this. I know your pain. Hope you get some relief somehow.
I have Paget’s. Since my teen yrs. It wasn’t found till later tho. I also have afew other things, a meningioma tumor that was on T-7 & fibromyalgia, chronic pain. History of RMSF from a tick bite. My pain is poorly controlled & I’m suffering
Yes, irregular bone growth that can also cause pain due to changes in nerve endings, blood vessels. Fortunately, its not "bone cancer," only 1 in 1,000 cases of Paget's might get cancer.
Not going to be able to prove this one unlike everything else, but I do think it's magnesium deficiency, precipitated, in today's world, by thiamine supplements which are all excessive, or a variety of drugs causing magnesium loss in the kidney. Some more evidence it's magnesium related: west of ireland has much lower paget disease than east (dublin) or anywhere in britain. The west is marked by steep mountain rivers carrying more minerals, while the east is flat. Also Ireland seems to have significantly larger dairy industry and consumption than Britain, given that there's lots of Irish cheese and butter you can buy but not so much British. "Normal level of serum magnesium does not rule out moderate to severe magnesium deficiency." 12.2. Abnormal Bone: Hypermineralization and Hyperplasia of Magnesium Deficiency "Paradoxically, magnesium-deficient animals have exhibited excess (abnormal) bone growth in addition to osteopenia" from: Abnormal Bone in Magnesium Deficiency, 1980 If that doesn't sound like Paget A magnesium deficiency is easily corrected since the body doesn't store much. However it would be important to maintain proper magnesium levels while say restoring a calcium deficiency, which takes much longer due to massive bone stores. Here's another guess based on the fact that 60% of paget's patients are hypertensive. Which probably means they are on ace inhibitors. Since a critical part of magnesium reabsorption by the kidney is an active cellular process (only 5% but when it fails it always leads to hypomagnesemia) requiring energy, it could simply be that when you lower blood flow to the kidney, that a lot of the active reabsorption processes suffer and you leak minerals like magnesium. Proof: during strenuous exercise, the body routes blood away from the kidney, and it is known that strenuous exercise increases magnesium loss in urine. 38:05 I don't quite see how turning off bone remodeling with bisphosphonates is a good idea. Bone needs to turn over. Better to fix the remodeling process by providing the needed magnesium..
@@Rene-uz3eb thank you at this point I’ll try anything. I live in the states it’s not common here.thats why it’s hard to find a doctor that deals with pagets. 😞
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That was fantastic! I'm Brazil, doing a master's seminar about Paget's disease, and this presentation helped me a lot! Thank you to Prof. Stuart Ralston, you are brilliant!
Thank you for this info. I have pagets and I’m in very great pain. I live in the United States and it’s not common here so it was hard for me to find a doctor who deals with pagets but I feel like I’m his ginnea pig. He’s learning like I am. I did have an zol acid infusion which helped with pain but am taking a break from infusion cause he saids he doesn’t want my teeth or hair to start falling out. It’s been two years since last infusion and I am starting to feel great great pain. My right hip feels like it’s ready to crack. So uncomfortable I can’t sleep at night.thank you for this info as I’m trying to educate myself about my disease since no one else can tell me about it.😢
I guess I have it, as my xray showed abnormalities and I have family members who have/had very curved legs, too.
Is your pain "scoliosis" - like? I have muscle thightness and cracking joints and my knee and my thighs started to hurt a lot, a little like it was "too" big or stiff.
I hope you find releave with ur pain.
@@noclue5168 my knees, legs and hip hurt so much it’s hard to walk. I can only walk about 10 minutes if that before I feel like my legs giving up. My skin is so sensitive clothes are starting to be an issue to wear. I finally get to see my doctor on the 15th of April. I started to eat gummies for pain especially to sleep. When I go to bed it hurts the most can’t sleep from pain. My bones hurt my skin hurts. It’s time for another infusion. I feel for pagets people I’m sorry you’re going through this. I know your pain. Hope you get some relief somehow.
Nerve pain is one of my worst fears, peace and health to sufferers
I have Paget’s. Since my teen yrs. It wasn’t found till later tho. I also have afew other things, a meningioma tumor that was on T-7 & fibromyalgia, chronic pain. History of RMSF from a tick bite. My pain is poorly controlled & I’m suffering
😢
very good information, it can be confused with other diseases, but this one accumulates bone...
Yes, irregular bone growth that can also cause pain due to changes in nerve endings, blood vessels. Fortunately, its not "bone cancer," only 1 in 1,000 cases of Paget's might get cancer.
thanks! great starting point for my essay
found this originally on iTunes U and found it fascinating
Not going to be able to prove this one unlike everything else, but I do think it's magnesium deficiency, precipitated, in today's world, by thiamine supplements which are all excessive, or a variety of drugs causing magnesium loss in the kidney.
Some more evidence it's magnesium related: west of ireland has much lower paget disease than east (dublin) or anywhere in britain. The west is marked by steep mountain rivers carrying more minerals, while the east is flat. Also Ireland seems to have significantly larger dairy industry and consumption than Britain, given that there's lots of Irish cheese and butter you can buy but not so much British.
"Normal level of serum magnesium does not rule out moderate to severe magnesium deficiency."
12.2. Abnormal Bone: Hypermineralization and Hyperplasia of Magnesium Deficiency
"Paradoxically, magnesium-deficient animals have exhibited excess (abnormal) bone growth in addition to osteopenia"
from: Abnormal Bone in Magnesium Deficiency, 1980
If that doesn't sound like Paget
A magnesium deficiency is easily corrected since the body doesn't store much. However it would be important to maintain proper magnesium levels while say restoring a calcium deficiency, which takes much longer due to massive bone stores.
Here's another guess based on the fact that 60% of paget's patients are hypertensive. Which probably means they are on ace inhibitors. Since a critical part of magnesium reabsorption by the kidney is an active cellular process (only 5% but when it fails it always leads to hypomagnesemia) requiring energy, it could simply be that when you lower blood flow to the kidney, that a lot of the active reabsorption processes suffer and you leak minerals like magnesium.
Proof: during strenuous exercise, the body routes blood away from the kidney, and it is known that strenuous exercise increases magnesium loss in urine.
38:05 I don't quite see how turning off bone remodeling with bisphosphonates is a good idea. Bone needs to turn over. Better to fix the remodeling process by providing the needed magnesium..
Interesting. So should pagets people take magnesium supplement And not get infusions?
Sounds like its worth a try until there's either slight improvement or the contrary
@@Rene-uz3eb thank you at this point I’ll try anything. I live in the states it’s not common here.thats why it’s hard to find a doctor that deals with pagets. 😞
Gostaria de algo em português. Não sei inglês.