Amen, to that! It certainly helps knowing, other's are going thru the same, as one's self is. I am the only child, out of 5, that inherited this genetic illness, I have, that is causing all my issues. It attacks all my Endocrine Glands, which of course, control our bodies! What kind of luck is that?? Better yet, the rest of my syblings, all live about 750 miles away, & do not concern themselves, with MY problem's! As you said, It is wonderful, to be able to go somewhere, where other's do experience & care about what is going on! Thanks for talking with me & good luck to you, periwinkleView Thread
Good morning, I wish I had the answer's you seek, as I have had a surgery similar to yours, only a little more intense. I, too, have lost approx., an inch or so, with it being only 8yrs., since surgery. I also have issue's down by my tailbone, although, there is not a surgeon that will attempt the surgery. I will follow your story, with great interest, & pray for you at the same time. Thank-you, periwinkle p.s. I am, already on disability...View Thread
Good morning, I was diagnosed with Severe Osteoporosis, @ age 35. I started with a prescription Calcium pill, plus the Vit. D. I was on that for a while, I can't remember how long, but then onto the Forteo. You use the Forteo for 2 years, along with the Vit. D. I did not have any side effects from the Forteo! None at all. Then I was put on Atelvia, another pill for Osteoporosis, along with the Vit. D. That was about a year or so ago, and all is well. My bone loss stopped, & is slowly improving, which is better than going in the negative direction! It is a battle I will be fighting forever as I do not have any Parathyroid Glands, which produce our Calcium. So, that is my story. At least, part of it! But, if you are as critical, as I was, go for it! You do not want to go thru all the surgeries that I have, for broken hips & back! You have A-LOT to lose! periwinkle p.s. I do water exercises, with water weights, as it is low impact & not as stressful on your body....View Thread
I had gone to my M.D., for another issue. He ran some tests, one of them showing a high Calcium count. Most people would think this is good, but the calcium, was in my blood, not my bones! I was then sent for a Bone Density, which showed I had Severe Osteoporosis! My Dr. suggested I contact my Mother for any family history of this, as it was rare. It did explain all my Kidney Stones, as too much calcium in the blood. causes Kidney Stones. Surprisingly, my Mother said YES, that her family had a rare, inherited, genetic disorder! She actually, had, had the same problem some 30yrs., before! I guess, since I lived 750 miles away for many years, just never told me! That one diagnosis has changed my life, as it is a disease that takes over your Endocrine System! My, Parathyroids, which produce our Calcium, all had tumors & had to be removed! Leaving me on meds the rest of my life. Along with my Pituitary, Adrenal Glands, & Pancreas, all causing many problems in my body! Due to the Osteoporosis, I 've experienced a broken hip @ age 35yrs, then my back, broken in 3 places, & a new knee! Hence, that one little test, has changed my life forever, yet, also saved my life! periwinkleView Thread
Good morning! Yes, after finding a very good Endocrologist, he evaluated my illness & started me on Forteo, for 2 yrs., & now on Atelvia. I also do a-lot of Low Impact exercising in my swimming pool, with the foam water weights. I have to do injections of Norditropin, a Growth Hormone, for my Pituitary, and on a rather high dose of Prevacid, for my stomach, as I have a high Gastrin Count, from tiny Adenoma's forming in my stomach. I actually have cousins, whom have had parts of their stomachs removed, from this illness, along with several having surgery to remove Tumors on their Pituitary's! Apparently, this illness has been in my Mother's side of my family for a long time. Unfortunately, long before Dr.'s in Pittsburgh, Pa., did a study on my family, many family member's passed on, not even knowing what had caused their suffering, let alone, there are now, treatments for it! Knowing all of this, makes me aware, that donating $$, to Medical Research Programs is of utmost importance! How else, do the researcher's & Dr.'s, learn how to treat all of the many diseases out there?? So far,so good, on my bones. I seem to be holding on, rather than losing! Thank you so much for asking, periwinkleView Thread
Good morning, I also have Severe Osteoporosis. Diagnosed @ age 35yrs., when my hip broke, due to an underlying illness, I was not aware of. Anyway, I was on Foeteo, for the 2yr. stint. Unfortunately, it did not improve my bone density, but, I keep on the "follow up med" & I find working out in the swimming pool, wonderful! With Water Weights & the Low Impact action, in the water, you don't have the beating of your bones, on pavement. I've been told, by my Dr., to do the lowest impact exercises possible, so I also started Tai Chi. Hopefully, I can @ least maintain, with-out loss, where I am at now. I am on Steroids, which go against me also. I wish everyone with this illness, the best of luck, with it, & whichever program works for you! periwinkleView Thread
My prayers are with you, also. I know exactly what you're Mama has been thru! My back, was broken in 3 places, only discovered, AFTER, many years of complaining to my "Pain Management Dr." of severe pain through-out my entire back! I think he tried everything, BUT, an MRI, to totally check everything in my back! My knee's are the same way. One down, one to go! Unfortunately, I have to take the Steroids everyday, to keep me alive! They, on their own, are doing so much damage, to my body, it's pitiful, but, what can I do?? I wish you both the most life can offer you, and I do walk every day, even though there are days, I barely make it back home! But, I've been told, "If you sit down, and give up, so will my body!" So, it's off I go! Good-luck, and have a great day! periwinkleView Thread
Wonderful! I am glad to hear, you are moving fast, on this! I, also, had a total hystorectomy, @ age 33yrs. Everything, thrown together, didn't give me much of a chance. I will pray, they can get you on some meds, to @ least stop it, before it can do anymore damage! I wish you the best of luck, with all you're test results, periwinkleView Thread
Good morning, I, also was diagnosed with a Genetic, inherited Disease, that effected the Calcium, non-production of, from my Parathyroids! At age 35yrs. my right hip broke! Just broke. Meanwhile, I was constantly complaining of severe back pain, to my "Pain Specialist". After, being prompted, by my Dr., to keep working out, to not become sedentary, I could not take anymore! I asked for an MRI, which showed my back, broken in 3 places! Yes! From Osteoporosis! I went to my Orthopaedist, whom planned surgery, ASAP! It was more difficult, than usual, as he could not access my spine thru my tummy, which I'm told is normal, due to my tummy being covered in Gortex Mesh Implant, from numerous abdominal surgeries! It was a difficult recovery, but well worth it! You need a GOOD Orthopaedic, and perhaps a GOOD, "Pain Specialist". That is my opinion, anyway. Do you have a reliable Family M.D.? Maybe, go to he or she, for advice. You also, need to find out, what is causing your Osteoporosis! Trust me, it does not stop, in your back! I wish you the best of luck, and PLEASE, always, get another opinion, if you are in question!! Follow your gut instinct. It's usually right! periwinkleView Thread
Good morning, Thank-you for your interest. Yes, The fact is, I have not seen my Endo Dr., yet. Hopefully, he will have the answers I need. Gosh knows, they have already rebuilt the main bones, in my body! I can only pray, that it did do some kind of improvement! I need a plus on my side! Right now, my main complaint is Carpal Tunnel in both arms. It makes it difficult to type, but even more, to use my cane, which really keeps me from falling, many times! My Dr. ordered me a walker with some sort of arm holder's. I guess they keep me arms up, so I'm not putting so much pressure on them. As for surgery for the C.T.S., I really get a sense of HIGH anxiety, when any Dr. mentions the "S" word!! I'm at 25 surgeries in 10yrs. & honestly freak out anymore, being rolled into the O.R.! I know there are MANY other people whom have suffered thru much more, but right now, I feel like I'm @ a breaking point! But, I do Thank-you, for your words of encouragement & can only pray for some good news @ my next appt. Thanks again, periwinkleView Thread
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