RE: [TMIC] Be Careful When Exercising
I have read that steroids are alsodetrimental to eye sight. BERNARD BUTCHER From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Saturday, October 28, 2006 9:45 AMTo: [EMAIL PROTECTED]; tmic-list@eskimo.comSubject: Re: [TMIC] Be Careful When Exercising You said: I am so upset that I was never told that I would get osteoporosis, nor treated for it until after the breaks, that I could just spit! Medication for Osteoporosis ought to be given right from the onset of the Transverse Myelitis, not four years down the road! I say: AMEN! I am still learning basic things about the results of the 5000 mg of steroids they gave me, that are causing problems. If they would have told me upfront about how the steroids would affect the Calcium and Zinc, I could have done things to compensate, from the beginning! I'm grateful for a correct diagnosis and the steroids to stop the inflammation, so that I could start healing. But SOMEONE should put all the information together and let the patient know what's going on!!! I mean, how hard would that be? Sally
Re: [TMIC] Be Careful When Exercising
I have been on coricosteroids for a long time. Right now I am on 10mg every day. That is a fairly low dose. But I have been on much higher doses over the years and did a year of monthly iv steroids which is 1000mg. My doctor has me go for a bone density test every year and so far everything is ok. Lynn in RI - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] ; TMIC-LIST@eskimo.com Sent: Sunday, October 29, 2006 12:57 AM Subject: Re: [TMIC] Be Careful When Exercising Hi Jude,, I just asked my Primary about a bone density test during one of my regular appointments, and he referred me to that department for an appointment. I have an HMO, so that's the procedure for this. I am not sure if you need to have your primary request it or not, but that's where I started. Come to think of it, it's been about 5 yrs, so it's probably time to get it done again, or most likely, overdue. Hugs to you, Barbara A
Re: [TMIC] Be Careful When Exercising
You said: I am so upset that I was never told that I would get osteoporosis, nor treated for it until after the breaks, that I could just spit! Medication for Osteoporosis ought to be given right from the onset of the Transverse Myelitis, not four years down the road! I say: AMEN! I am still learning basic things about the results of the 5000 mg of steroids they gave me, that are causing problems. If they would have told me upfront about how the steroids would affect the Calcium and Zinc, I could have done things to compensate, from the beginning! I'm grateful for a correct diagnosis and the steroids to stop the inflammation, so that I could start healing. But SOMEONE should put all the information together and let the patient know what's going on!!! I mean, how hard would that be? Sally
Re: [TMIC] Be Careful When Exercising
Title: AOL Email Why is it that I hear over and over from TMIC members, that they have not been told the whole truth about their dx's andmedications, because their doctors have such limited basic medical understandings of certain illnesses? We are either over or under medicated, given the wrong medications and/or dx's, lied to- either directly or by omission- by doctors who are supposed to be educated specialists,not to mention the fact that we are spoken to as if we were children, incapable of understanding the most basic information or in such "doctor-ese" that we are incapable of understanding simply for the fact that we are not as educated as the medical community. And, if legal recourse is valid and available regarding our chronic mistreatment by doctors and specialists, and we take advantage of it, why are we are then at the mercy of the very people we are suing andblacklisted so that we are neveragain able to receive medical treatment in any state, county, or town in the USA? I feel as though I have been misdiagnosed or at the least, uninformed, about the side effects of being a non-weight-bearing individual. And in answer to my inquiries I receive shrugs of the shoulders from my doctors. Why? Towards what end? What is the deal??? Am I acting like a crazy person? Does anyone else out there feel the same way as I do? Thank you all who respond. What does a person have to do to be told the truth? Can anyone out there help me? Sincerely, Jude
Re: [TMIC] Be Careful When Exercising
Dear Jude, You are not insane. This is how it is. I have had TM or something, heck one doctor says yes, one says maybe you have had it and another looks at me like I am some freak of nature. We unfortunately seem to have acquired an illness/s that very little is know about. Doctors cannot even agree that there is such a thing a TM. One doctor I saw said there is MS, no TM, only MS.If you have what we call TM it is really MS. And, no you cannot sue them or they will avoid you like the plague. And, if you do not get better and you keep trying for more answers they will get annoyed. They do not know the reasons for why we are as we are nor do they most times know what to do for us. There are millions of people out there with strange illnesses and people dying everyday from all kinds of things. Life is precious, but cheap. If we are lucky enough, perhaps sometime an answer will be found in our lifetime. If not, well, we just need to be brave and bear it all. At least we all here have found each other and it helps to know that none of us are alone.We have each other to shout to when we can nolonger bear what is happening. You hang in there. We hear you and you make sense; at least to me. You make a lot of sense. Natalie B On 10/28/06, [EMAIL PROTECTED] [EMAIL PROTECTED] wrote: Why is it that I hear over and over from TMIC members, that they have not been told the whole truth about their dx's andmedications, because their doctors have such limited basic medical understandings of certain illnesses? We are either over or under medicated, given the wrong medications and/or dx's, lied to- either directly or by omission- by doctors who are supposed to be educated specialists,not to mention the fact that we are spoken to as if we were children, incapable of understanding the most basic information or in such doctor-ese that we are incapable of understanding simply for the fact that we are not as educated as the medical community. And, if legal recourse is valid and available regarding our chronic mistreatment by doctors and specialists, and we take advantage of it, why are we are then at the mercy of the very people we are suing andblacklisted so that we are neveragain able to receive medical treatment in any state, county, or town in the USA? I feel as though I have been misdiagnosed or at the least, uninformed, about the side effects of being a non-weight-bearing individual. And in answer to my inquiries I receive shrugs of the shoulders from my doctors. Why? Towards what end? What is the deal??? Am I acting like a crazy person? Does anyone else out there feel the same way as I do? Thank you all who respond. What does a person have to do to be told the truth? Can anyone out there help me? Sincerely, Jude
Re: [TMIC] Be Careful When Exercising
Forgive me, I don't understand the connection -- is TM known to lead to osteoporosis? Or do some medications lead to that? Or is it that being non-weight-bearing makes one more prone to it? Barbara H. http://barbarah.wordpress.com/
Re: [TMIC] Be Careful When Exercising
Title: AOL Email Thank you my dear Natalie. I needed to hear that! Sometimes, I feel so fragile and don't know how careful I have to be now, I don't know what to do. Guess I'd better get myself to the Orthopedic and see what he will make to protect my legs from future breakage. Does anyone know to whom one goes for the bone density testing and how often one ought to go? My primary doctor has never mentioned it, nor my orthopedic doc, nor the physiatrist I see once a year or the neurologist whom I've seen once in four years. Love Ya, Jude
Re: [TMIC] Be Careful When Exercising
No, I don't think you went overboard at all or sent it to the wrong place. As I said, I was just trying to understand the connection. It's important information for everyone, especially those who can't walk. I imagine those of us who aren't as physically active as others might be affected as well. Barbara H. http://barbarah.wordpress.com/ In a message dated 10/28/2006 7:24:57 PM Eastern Standard Time, [EMAIL PROTECTED] writes: In a message dated 10/28/2006 4:28:10 PM Central Standard Time, [EMAIL PROTECTED] writes: Forgive me, I don't understand the connection -- is TM known to lead to osteoporosis? Or do some medications lead to that? Or is it that being non-weight-bearing makes one more prone to it? Barbara H Ok, Barbara - It is my understanding that it is non-weight-bearing people who are prone to extreme osteoporosis because the main fundamental of building bone is weight bearing. In all of my life I had never heard that, but it's true and not simply for those of us with TM who cannot walk, but also for any "wheel-chair-bound" (for lack of better term) persons. I guess I went overboard by submitting such a long email, but also by sending it to the wrong place. It might have faired better sent to a support group for wheel chair users. Who knows, I've never gone to a site like that...maybe testing and treating for severe osteoporosis is common among those of us who wheel it all day. I guess that will be my next move because I don't feel as though I've gotten it out of my system. So far, in four years, I have yet to shed a tear for my losses from TM, and only now feel like I am going through the anger period. That's not normal, is it? Anyone know?
