Re: [TMIC] Unidentified subject!
Friends, I am doing alright, but have developed new problems related to osteopenia, which is thinning of bones, and one step before osteoporosis. I have cracked a vertebrae—L2—and this causes discomfort. But the real problem is my right hip, which just sings a deep pain all up and down my leg. Also, at night I seemed to have developed restless leg syndrome or something of the sort, because it is impossible to get comfortable, and now I don’t sleep more than about 45 minutes at a time. My PCP suggested, after looking at x-rays, an MRI, and a bone density scan, that I try Prolia, an injection given in the Dr’s office every 6 months, for bone health. It is very pricy and the copay is stiff. Has anyone had experience taking any kind of osteo medicine, and what were the side effects? Thanks, Dalton Dalton Garis Flushing, Queens New York, USA (718) 838-0437 On Jan 26, 2015, at 2:34, Iris Whiddett i.whidd...@icloud.com wrote: Betty, while in hospital after TM hit, I described this awful discomfort I was experiencing as feeling like having bands of steel under my skin. The neurologist said nothing, just looked at me as though I was deranged!! Of course, I later learned for myself that it was commonly referred to as banding. Iris UK Sent from my iPad On 26 Jan 2015, at 00:25, Betty Shaffer vasso...@gmail.com wrote: I, too, have banding. When I asked the neurologist about it, he asked, what's that? I tried to explain it to him. Sent from my iPad On Jan 25, 2015, at 2:10 PM, Iris Whiddett i.whidd...@icloud.com wrote: Hi Rob, sorry to hear that things have been so bad for you. Not many speak about banding. In six years I have had some very slight improvement in other areas but the banding is always with me, intensifying with changes in the weather. I have accepted that it is a permanent part of my life. Strangely, it never bothers me when I am in bed. Regards Iris UK Sent from my iPad
Re: [TMIC] Unidentified subject!
Hi Sam, That information in very useful, thanks. Nikki, UK Sent from my iPad On 26 Jan 2015, at 14:47, luth...@comcast.net wrote: Friends, I too have had TM, but converted to MS as perhaps 1 in 3 will. Some of you may remember me- Sam from Boston. Remember that MS and TM are cousins, and on the same demyelinization spectrum. TM can be thought of as being MS of the spinal cord. If you have a symptom that you can't explain or understand, or that you need to know about, look up the symptoms and occurrences of MS and you likely will find it there. The banding, the fatigue, the depression, the heat and cold sensitivities, are all common to MS and are discussed in articles about MS. Medications that are used to treat MS are also frequently used to treat Transfers Myelitis. You also will find resources and explanations here: Google and join the Transverse Myelitis Association: http://m.myelitis.org/?url=http%3A%2F%2Fmyelitis.org%2Fdm_redirected=true#2923 Here you will find tremendous resources and support for you, and professional information for your physician. Maintain your hope! If you look for them, you will find that there are always positive things in your life, starting with the people on this mail string, who are here 24hrs per day to support you. Sam from Boston -Original Message- From: suerdlagpu...@gmail.com To: i.whidd...@icloud.com Cc: tmic-l...@eskimo.net,vasso...@gmail.com Sent: 2015-01-26 09:17:03 GMT Subject: Re: [TMIC] Unidentified subject! Friends, I am doing alright, but have developed new problems related to osteopenia, which is thinning of bones, and one step before osteoporosis. I have cracked a vertebrae—L2—and this causes discomfort. But the real problem is my right hip, which just sings a deep pain all up and down my leg. Also, at night I seemed to have developed restless leg syndrome or something of the sort, because it is impossible to get comfortable, and now I don’t sleep more than about 45 minutes at a time. My PCP suggested, after looking at x-rays, an MRI, and a bone density scan, that I try Prolia, an injection given in the Dr’s office every 6 months, for bone health. It is very pricy and the copay is stiff. Has anyone had experience taking any kind of osteo medicine, and what were the side effects? Thanks, Dalton Dalton Garis Flushing, Queens New York, USA (718) 838-0437 On Jan 26, 2015, at 2:34, Iris Whiddett i.whidd...@icloud.com wrote: Betty, while in hospital after TM hit, I described this awful discomfort I was experiencing as feeling like having bands of steel under my skin. The neurologist said nothing, just looked at me as though I was deranged!! Of course, I later learned for myself that it was commonly referred to as banding. Iris UK Sent from my iPad On 26 Jan 2015, at 00:25, Betty Shaffer vasso...@gmail.com wrote: I, too, have banding. When I asked the neurologist about it, he asked, what's that? I tried to explain it to him. Sent from my iPad On Jan 25, 2015, at 2:10 PM, Iris Whiddett i.whidd...@icloud.com wrote: Hi Rob, sorry to hear that things have been so bad for you. Not many speak about banding. In six years I have had some very slight improvement in other areas but the banding is always with me, intensifying with changes in the weather. I have accepted that it is a permanent part of my life. Strangely, it never bothers me when I am in bed. Regards Iris UK Sent from my iPad
Re: [TMIC] Unidentified subject!
Hi, Dalton sorry to hear that you are in so much pain. Personally, I the only experience of osteo meds is being prescribed extra CalciChew for my bones and Lidacane patches for the pain. Hope you get sorted soon. Nikki, UK Sent from my iPad On 26 Jan 2015, at 14:47, luth...@comcast.net wrote: Friends, I too have had TM, but converted to MS as perhaps 1 in 3 will. Some of you may remember me- Sam from Boston. Remember that MS and TM are cousins, and on the same demyelinization spectrum. TM can be thought of as being MS of the spinal cord. If you have a symptom that you can't explain or understand, or that you need to know about, look up the symptoms and occurrences of MS and you likely will find it there. The banding, the fatigue, the depression, the heat and cold sensitivities, are all common to MS and are discussed in articles about MS. Medications that are used to treat MS are also frequently used to treat Transfers Myelitis. You also will find resources and explanations here: Google and join the Transverse Myelitis Association: http://m.myelitis.org/?url=http%3A%2F%2Fmyelitis.org%2Fdm_redirected=true#2923 Here you will find tremendous resources and support for you, and professional information for your physician. Maintain your hope! If you look for them, you will find that there are always positive things in your life, starting with the people on this mail string, who are here 24hrs per day to support you. Sam from Boston -Original Message- From: suerdlagpu...@gmail.com To: i.whidd...@icloud.com Cc: tmic-l...@eskimo.net,vasso...@gmail.com Sent: 2015-01-26 09:17:03 GMT Subject: Re: [TMIC] Unidentified subject! Friends, I am doing alright, but have developed new problems related to osteopenia, which is thinning of bones, and one step before osteoporosis. I have cracked a vertebrae—L2—and this causes discomfort. But the real problem is my right hip, which just sings a deep pain all up and down my leg. Also, at night I seemed to have developed restless leg syndrome or something of the sort, because it is impossible to get comfortable, and now I don’t sleep more than about 45 minutes at a time. My PCP suggested, after looking at x-rays, an MRI, and a bone density scan, that I try Prolia, an injection given in the Dr’s office every 6 months, for bone health. It is very pricy and the copay is stiff. Has anyone had experience taking any kind of osteo medicine, and what were the side effects? Thanks, Dalton Dalton Garis Flushing, Queens New York, USA (718) 838-0437 On Jan 26, 2015, at 2:34, Iris Whiddett i.whidd...@icloud.com wrote: Betty, while in hospital after TM hit, I described this awful discomfort I was experiencing as feeling like having bands of steel under my skin. The neurologist said nothing, just looked at me as though I was deranged!! Of course, I later learned for myself that it was commonly referred to as banding. Iris UK Sent from my iPad On 26 Jan 2015, at 00:25, Betty Shaffer vasso...@gmail.com wrote: I, too, have banding. When I asked the neurologist about it, he asked, what's that? I tried to explain it to him. Sent from my iPad On Jan 25, 2015, at 2:10 PM, Iris Whiddett i.whidd...@icloud.com wrote: Hi Rob, sorry to hear that things have been so bad for you. Not many speak about banding. In six years I have had some very slight improvement in other areas but the banding is always with me, intensifying with changes in the weather. I have accepted that it is a permanent part of my life. Strangely, it never bothers me when I am in bed. Regards Iris UK Sent from my iPad
Re: [TMIC] Unidentified subject!
Friends, I too have had TM, but converted to MS as perhaps 1 in 3 will. Some of you may remember me- "Sam from Boston."Remember that MS and TM are cousins, and on the same demyelinization spectrum. TM can be thought of as being "MS of the spinal cord." If you have a symptom that you can't explain or understand, or that you need to know about, look up the symptoms and occurrences of MS and you likely will find it there. The banding, the fatigue, the depression, the heat and cold sensitivities, are all common to MS and are discussed in articles about MS. Medications that are used to treat MS are also frequently used to treat Transfers Myelitis. You also will find resources and explanations here: Google and join the Transverse Myelitis Association:http://m.myelitis.org/?url="">Here you will find tremendous resources and support for you, and professional information for your physician. Maintain your hope! If you look for them, you will find that there are always positive things in your life, starting with the people on this mail string, who are here 24hrs per day to support you.Sam from Boston-Original Message-From: suerdlagpu...@gmail.comTo: i.whidd...@icloud.comCc: tmic-l...@eskimo.net,vasso...@gmail.comSent: 2015-01-26 09:17:03 GMTSubject: Re: [TMIC] Unidentified subject!Friends,I am doing alright, but have developed new problems related to osteopenia, which is thinning of bones, and one step before osteoporosis.I have cracked a vertebraeL2and this causes discomfort. But the real problem is my right hip, which just sings a deep pain all up and down my leg. Also, at night I seemed to have developed restless leg syndrome or something of the sort, because it is impossible to get comfortable, and now I dont sleep more than about 45 minutes at a time.My PCP suggested, after looking at x-rays, an MRI, and a bone density scan, that I try Prolia, an injection given in the Drs office every 6 months, for bone health. It is very pricy and the copay is stiff.Has anyone had experience taking any kind of osteo medicine, and what were the side effects?Thanks,Dalton Dalton GarisFlushing, QueensNew York, USA(718) 838-0437 On Jan 26, 2015, at 2:34, Iris Whiddett i.whidd...@icloud.com wrote:Betty, while in hospital after TM hit, I described this awful discomfort I was experiencing as feeling like having bands of steel under my skin. The neurologist said nothing, just looked at me as though I was deranged!! Of course, I later learned for myself that it was commonly referred to as banding.Iris UKSent from my iPadOn 26 Jan 2015, at 00:25, Betty Shaffer vasso...@gmail.com wrote:I, too, have banding. When I asked the neurologist about it, he asked, whats that?I tried to explain it to him.Sent from my iPadOn Jan 25, 2015, at 2:10 PM, Iris Whiddett i.whidd...@icloud.com wrote:Hi Rob, sorry to hear that things have been so bad for you. Not many speak about banding. In six years I have had some very slight improvement in other areas but the banding is always with me, intensifying with changes in the weather. I have accepted that it is a permanent part of my life. Strangely, it never bothers me when I am in bed.RegardsIris UKSent from my iPad
Re: [TMIC] Unidentified subject!
Hi Iris, I also hope it continues. Nikki, UK Sent from my iPhone On 26 Jan 2015, at 20:01, Iris Whiddett i.whidd...@icloud.com wrote: Well done Nikki for triggering this flurry of activity on TMIC. I hope it continues. Iris Sent from my iPad On 26 Jan 2015, at 07:56, Nikki Macleod nmacleo...@yahoo.co.uk wrote: Hi, I also suffer from 'banding', the neurologist didn't speak about it but I learnt what it was from other people TM had hit. Nikki, UK Sent from my iPad On 26 Jan 2015, at 07:34, Iris Whiddett i.whidd...@icloud.com wrote: Betty, while in hospital after TM hit, I described this awful discomfort I was experiencing as feeling like having bands of steel under my skin. The neurologist said nothing, just looked at me as though I was deranged!! Of course, I later learned for myself that it was commonly referred to as banding. Iris UK Sent from my iPad On 26 Jan 2015, at 00:25, Betty Shaffer vasso...@gmail.com wrote: I, too, have banding. When I asked the neurologist about it, he asked, what's that? I tried to explain it to him. Sent from my iPad On Jan 25, 2015, at 2:10 PM, Iris Whiddett i.whidd...@icloud.com wrote: Hi Rob, sorry to hear that things have been so bad for you. Not many speak about banding. In six years I have had some very slight improvement in other areas but the banding is always with me, intensifying with changes in the weather. I have accepted that it is a permanent part of my life. Strangely, it never bothers me when I am in bed. Regards Iris UK Sent from my iPad
[TMIC]
It has been a pleasant surprise to see so many people doing email.. I started following you all 12 years ago when my son, Dennis ,came down with TM. I hope more of the people that were connecting before face book will come back to the original site. Good luck to all of you. My prayers and thoughts are with all of you. Rebecca
Re: [TMIC] Unidentified subject!
Iris, I found that there are several different FB pages, one is "people living with transverse myelitis" that seemed to be very helpful. You might look at that one ;-) Glad you are finding support! Cheers! Sam On Jan 26, 2015 11:33 AM, Iris Whiddett i.whidd...@icloud.com wrote:Thanks Sam, you are so right about this Group. Ive tried facebook but I dont feel it compares to the help and support and useful information always to be found here. Iris UKSent from my iPadOn 26 Jan 2015, at 14:47, luthyen@comcast.net wrote:Friends, I too have had TM, but converted to MS as perhaps 1 in 3 will. Some of you may remember me- Sam from Boston.Remember that MS and TM are cousins, and on the same demyelinization spectrum. TM can be thought of as being MS of the spinal cord. If you have a symptom that you cant explain or understand, or that you need to know about, look up the symptoms and occurrences of MS and you likely will find it there. The banding, the fatigue, the depression, the heat and cold sensitivities, are all common to MS and are discussed in articles about MS. Medications that are used to treat MS are also frequently used to treat Transfers Myelitis. You also will find resources and explanations here: Google and join the Transverse Myelitis Association:http://m.myelitis.org/?url="">Here you will find tremendous resources and support for you, and professional information for your physician. Maintain your hope! If you look for them, you will find that there are always positive things in your life, starting with the people on this mail string, who are here 24hrs per day to support you.Sam from Boston-Original Message-From: suerdlagpunga@gmail.comTo: i.whiddett@icloud.comCc: TMIC-LIST@eskimo.net,vasso9.s@gmail.comSent: 2015-01-26 09:17:03 GMTSubject: Re: [TMIC] Unidentified subject!Friends,I am doing alright, but have developed new problems related to osteopenia, which is thinning of bones, and one step before osteoporosis.I have cracked a vertebrae—L2—and this causes discomfort. But the real problem is my right hip, which just sings a deep pain all up and down my leg. Also, at night I seemed to have developed restless leg syndrome or something of the sort, because it is impossible to get comfortable, and now I don’t sleep more than about 45 minutes at a time.My PCP suggested, after looking at x-rays, an MRI, and a bone density scan, that I try Prolia, an injection given in the Dr’s office every 6 months, for bone health. It is very pricy and the copay is stiff.Has anyone had experience taking any kind of osteo medicine, and what were the side effects?Thanks,Dalton Dalton GarisFlushing, QueensNew York, USA(718) 838-0437 On Jan 26, 2015, at 2:34, Iris Whiddett i.whiddett@icloud.com wrote:Betty, while in hospital after TM hit, I described this awful discomfort I was experiencing as feeling like having bands of steel under my skin. The neurologist said nothing, just looked at me as though I was deranged!! Of course, I later learned for myself that it was commonly referred to as banding.Iris UKSent from my iPadOn 26 Jan 2015, at 00:25, Betty Shaffer vasso9.s@gmail.com wrote:I, too, have banding. When I asked the neurologist about it, he asked, whats that?I tried to explain it to him.Sent from my iPadOn Jan 25, 2015, at 2:10 PM, Iris Whiddett i.whiddett@icloud.com wrote:Hi Rob, sorry to hear that things have been so bad for you. Not many speak about banding. In six years I have had some very slight improvement in other areas but the banding is always with me, intensifying with changes in the weather. I have accepted that it is a permanent part of my life. Strangely, it never bothers me when I am in bed.RegardsIris UKSent from my iPad
