Re: [TMIC] Unidentified subject!
Dalton, I will be having my bone density test soon. I've had osteopenia since before TM and developed jaw bone problems after one of the early osteo drugs given to women years ago. I think that med was removed from the market and I have gently refused any of the new meds since. I'll have to make a decision again when my new PCP gets my report. However, I'll feel more comfortable discussing it this time, because I chose a female doctor who may also face the same decision as she ages. Keep us informed and if anything changes I'll post an update. Patti - Michigan On Jan 26, 2015, at 9:13 AM, Suerdlagpunga suerdlagpu...@gmail.com wrote: 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!
Baclofen reduces banding greatly for me. I remember Rob's posts when he made the decision to try the Baclofen pump, the operation, and the dosage changes. Rob, I wish it had continued to work for you without having other complications. Continue your group leadership. I know your group has been successful. Patti - Michigan On Jan 25, 2015, at 5:10 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!
Some of the neuroleptics (anti-seizure meds), which is what Baclofen is, will help as well. Good luck! Sam from BostonOn Jan 28, 2015 8:55 AM, Pat p...@voorheissigns.com wrote: Baclofen reduces banding greatly for me. I remember Rob's posts when he made the decision to try the Baclofen pump, the operation, and the dosage changes. Rob, I wish it had continued to work for you without having other complications. Continue your group leadership. I know your group has been successful. Patti - Michigan On Jan 25, 2015, at 5:10 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]
Your son was very active on here (along with many of us). I couldn't have survived those early days without the information, encourage, and friendship I received from this Email group. I thank God for Jim Lubin's work behind the scenes for this and the old TM Forum. My Neuro was pleased that I was involved with this support group, although, he had never heard of it before I told him things I was learning from the group. Mrs. R, it's nice to hear from you. On Jan 26, 2015, at 12:50 PM, wrabal...@gt.rr.com wrabal...@gt.rr.com wrote: 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!
Okay – I am dealing with something else then.Wonder what causes this problem.Told my doc about it and he just said to stretch it out – which I do. Only lasts about a day or so at a time. Janice From: Robert Pall Sent: Wednesday, January 28, 2015 10:12 AM To: jannic...@gmail.com ; malugss...@me.com ; nmacleo...@yahoo.co.uk Cc: i.whidd...@icloud.com ; tmic-list@eskimo.com Subject: Re: [TMIC] Unidentified subject! Banding to me does not mean painit means tightness! Like a rubber band being pulled to its limit! The baclofen pump is used to reduce banding and spasticity. Rob in NJ -Original Message- From: Janice Nichols jannic...@gmail.com To: Dalton Garis malugss...@me.com; Nikki Macleod nmacleo...@yahoo.co.uk Cc: Iris Whiddett i.whidd...@icloud.com; tmic-list tmic-list@eskimo.com Sent: Wed, Jan 28, 2015 10:30 am Subject: Re: [TMIC] Unidentified subject! Okay, as long as we are talking about this, when you all talk about banding pain, is it like very sharp pain?Every few weeks I have severe sharp pain at the top of my rib cage where it is almost hard to breathe. Is that banding? Janice -Original Message- From: Dalton Garis Sent: Wednesday, January 28, 2015 7:03 AM To: Nikki Macleod Cc: Iris Whiddett ; tmic-list@eskimo.com Subject: Re: [TMIC] Unidentified subject! It is the same thing MS people get. They call it “the MS Hug”, and for them it can be an almost constant annoyance and discomfort, especially when trying to fall asleep. Dalton On Jan 26, 2015, at 3:04 PM, Nikki Macleod nmacleo...@yahoo.co.uk wrote: 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
Re: [TMIC] Unidentified subject!
Okay, as long as we are talking about this, when you all talk about banding pain, is it like very sharp pain?Every few weeks I have severe sharp pain at the top of my rib cage where it is almost hard to breathe. Is that banding? Janice -Original Message- From: Dalton Garis Sent: Wednesday, January 28, 2015 7:03 AM To: Nikki Macleod Cc: Iris Whiddett ; tmic-list@eskimo.com Subject: Re: [TMIC] Unidentified subject! It is the same thing MS people get. They call it “the MS Hug”, and for them it can be an almost constant annoyance and discomfort, especially when trying to fall asleep. Dalton On Jan 26, 2015, at 3:04 PM, Nikki Macleod nmacleo...@yahoo.co.uk wrote: 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
Re: [TMIC] Unidentified subject!
Banding to me does not mean painit means tightness! Like a rubber band being pulled to its limit! The baclofen pump is used to reduce banding and spasticity. Rob in NJ -Original Message- From: Janice Nichols jannic...@gmail.com To: Dalton Garis malugss...@me.com; Nikki Macleod nmacleo...@yahoo.co.uk Cc: Iris Whiddett i.whidd...@icloud.com; tmic-list tmic-list@eskimo.com Sent: Wed, Jan 28, 2015 10:30 am Subject: Re: [TMIC] Unidentified subject! Okay, as long as we are talking about this, when you all talk about banding pain, is it like very sharp pain?Every few weeks I have severe sharp pain at the top of my rib cage where it is almost hard to breathe. Is that banding? Janice -Original Message- From: Dalton Garis Sent: Wednesday, January 28, 2015 7:03 AM To: Nikki Macleod Cc: Iris Whiddett ; tmic-list@eskimo.com Subject: Re: [TMIC] Unidentified subject! It is the same thing MS people get. They call it “the MS Hug”, and for them it can be an almost constant annoyance and discomfort, especially when trying to fall asleep. Dalton On Jan 26, 2015, at 3:04 PM, Nikki Macleod nmacleo...@yahoo.co.uk wrote: 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
Re: [TMIC] Unidentified subject!
Everybody, I had the baclofen Pump inserted in June 2013. Before the pump could be inserted I first had to do a trial at the hospital to determine if the pump was right for me. My neuro felt that the banding in my legs is caused by spasticity and not weakness. The reason I went with the pump is because I could not tolerate taking baclofen orally. To cut to the chase .I am considering removing the pump because the dosage required to help the banding also has caused me to have heart palpitations,nausau and a feeling of bloatedness. In addition it has made me lose my appetite causing me to lose 30 lbs. This is after my doing all possible due diligence. Therefore even though the pump has somewhat improved my banding the side effects eliminate the positives. God I hate TM Rob in NJ -Original Message- From: Sandra Melville luth...@comcast.net To: Pat p...@voorheissigns.com Cc: robthecfo robthe...@aol.com; tmic tmic-list@eskimo.com; Iris Whiddett i.whidd...@icloud.com Sent: Wed, Jan 28, 2015 1:10 pm Subject: Re: [TMIC] Unidentified subject! Everybody, Pat just reminded pointed out that I miss-spoke in my last post. Please excuse me, Baclophen is a muscle relaxant and anti-spasm med. It is NOT an anti-seizure med. One should never substitute one for the other without talking to one's doc! Dangerous effects could occur! Everybody, please don't take meds on the information of somebody on-line for just this reason-someone may mis-speak! Pat, I thank you! This message is intended for the use of the person(s) to whom it may be addressed. It may contain information that is privileged, confidential, or otherwise protected from disclosure under applicable law. If you are not the intended recipient, any dissemination, distribution, copying, or use of this information is prohibited. If you have received this message in error, please permanently delete it and immediately notify the sender. Thank you. Original message From: Sam Melville luth...@comcast.net Date:01/28/2015 9:20 AM (GMT-05:00) To: Pat p...@voorheissigns.com Cc: robthe...@aol.com, tmic tmic-list@eskimo.com, Iris Whiddett i.whidd...@icloud.com Subject: Re: [TMIC] Unidentified subject! Some of the neuroleptics (anti-seizure meds), which is what Baclofen is, will help as well. Good luck! Sam from BostonOn Jan 28, 2015 8:55 AM, Pat p...@voorheissigns.com wrote: Baclofen reduces banding greatly for me. I remember Rob's posts when he made the decision to try the Baclofen pump, the operation, and the dosage changes. Rob, I wish it had continued to work for you without having other complications. Continue your group leadership. I know your group has been successful. Patti - Michigan On Jan 25, 2015, at 5:10 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!
Everybody, Pat just reminded pointed out that I miss-spoke in my last post. Please excuse me, Baclophen is a muscle relaxant and anti-spasm med. It is NOT an anti-seizure med. One should never substitute one for the other without talking to one's doc! Dangerous effects could occur! Everybody, please don't take meds on the information of somebody on-line for just this reason-someone may mis-speak! Pat, I thank you! This message is intended for the use of the person(s) to whom it may be addressed. It may contain information that is privileged, confidential, or otherwise protected from disclosure under applicable law. If you are not the intended recipient, any dissemination, distribution, copying, or use of this information is prohibited. If you have received this message in error, please permanently delete it and immediately notify the sender. Thank you. div Original message /divdivFrom: Sam Melville luth...@comcast.net /divdivDate:01/28/2015 9:20 AM (GMT-05:00) /divdivTo: Pat p...@voorheissigns.com /divdivCc: robthe...@aol.com, tmic tmic-list@eskimo.com, Iris Whiddett i.whidd...@icloud.com /divdivSubject: Re: [TMIC] Unidentified subject! /divdiv /divSome of the neuroleptics (anti-seizure meds), which is what Baclofen is, will help as well. Good luck! Sam from BostonOn Jan 28, 2015 8:55 AM, Pat p...@voorheissigns.com wrote: Baclofen reduces banding greatly for me. I remember Rob's posts when he made the decision to try the Baclofen pump, the operation, and the dosage changes. Rob, I wish it had continued to work for you without having other complications. Continue your group leadership. I know your group has been successful. Patti - Michigan On Jan 25, 2015, at 5:10 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
