Re: [TMIC] tmic-list group
Specifically,My legs are going. Hips are bad. No possibility for getting new ones because with 7 fused vertebrae from L-2 on up I am forced to do all my bending in the hips.So other treatment options are in order.Could use some advice.Thanks in advance,DaltonSentfrommyBlackBerry10smartphone.From: MalugssuakSent: Sunday, July 5, 2015 7:59 AMTo: Gillian ClarkCc: tmic-list@eskimo.comSubject: Re: [TMIC] tmic-list groupGood to hear from our old friends again.Actually, I could use the activity as I am experiencing new problems and challenges and could use advice.See ya,DaltonOn Jul 5, 2015, at 6:10 AM, Gillian Clark mingalett...@activ8.net.au wrote: This is the first activity I’ve seen for a long time Jim, I think most of us are on facebook, I’m in several groups. Whatever happens, I’m so grateful to you for setting this group up. It was my saviour in the beginning of this shitty journey and I’ve made friendships that have lasted for almost 14 years. It’s free Jim and everyone is there. I’ll follow you wherever you go. Love you mate, Gilly From: Jim Lubin Sent: Sunday, July 05, 2015 4:18 PM To: tmic-list@eskimo.com Cc: tmic-list@eskimo.com Subject: Re: [TMIC] tmic-list group wondering if it is worth continuing to pay for it. $42 every 6 months. everyone seems to have moved to other groups. I might be able to move all the subscribed email addresses to another, free system using google groups, but the address would change to tmic-l...@myelitis.org. On Sat, Jul 4, 2015 at 9:32 PM, Pat Voorheis pjv1...@chartermi.net wrote: Hi Jim, There was a little bit of activity a few months ago between a few of us. I am on Face Book also. It was good to see your name today, because I was thinking about you this morning. I'm glad TMIC was available 11 years ago when I was diagnosed with TM and thank you for its availability. Patti - Michigan On Jul 4, 2015, at 1:02 PM, Jim Lubin jlu...@makoa.org wrote: is anyone still using the tmic-list@eskimo.com?
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] Hey everybody,
Good story. Very instructive. Thanks Dalton Sent from my BlackBerry 10 smartphone. Original Message From: Pat Sent: Wednesday, January 21, 2015 9:23 AM To: Susan Kleinz Cc: malugss...@gmail.com; Janice Nichols; Nikki Macleod; tmic-list@eskimo.com Subject: Re: [TMIC] Hey everybody, I'm here and on Face Book. I haven't had any changes in my TM, but I do have an interesting story about a suspected relapse. In December, 2013, I thought I had a TM relapse or a stroke and went to ER walking and talking as if I was in a drunken stupor. CT, MRI's, and Labs showed nothing new had happened and I recovered fine. My doctors and I were stumped. In December 2014, I woke up one morning feeling my TM normal with the start of a cold. I went thru my routine of meds, reading, and coffee. I had difficulty standing up, my walking was bad and felt drunk when I started for another cup of coffee. I again wondered if I was having a TM relapse. I sat and compared the two relapses. I didn't want to go thru another 36 hour observation in ER. I felt and walked and talked as if drunk both times. I had the start of a cold both times. I had taken cough syrup both times, but the bottle was almost empty so it couldn't be that. I didn't have a relapse at all. I had a reaction to taking a full dose of cough syrup with Dextromethorphan and my TM meds Lyrica and Baclofen - on an empty stomach. What a relief! I saw my PCP yesterday for my RX renewals and I think she was as relieved as I was. That means no TM relapses in 11 years. Praise the Lord! Patti - Michigan. On Jan 18, 2015, at 1:12 PM, Susan Kleinz skle...@cox.net wrote: Me too. On a trip but will be responding. ! So glad someone is still out there in our tm group Sent from my iPhone On Jan 17, 2015, at 10:41 AM, malugss...@gmail.com wrote: I'm still here also. Dalton Sent from my BlackBerry 10 smartphone. Original Message From: Janice Nichols Sent: Saturday, January 17, 2015 12:33 PM To: Nikki Macleod; tmic-list@eskimo.com Subject: Re: [TMIC] Hey everybody, Hi Nikki, I remember you! The old group has pretty well disbanded and gone to Facebook , etc. I have had TM for 8 years and there is always something improving. You have to work hard at it and keep moving, but it really pays off. Once in a while the bladder even improves for a hile - and then to the usual, but I will take what I can get. I really wish doctor's would not give a time limit on improvement - we all go at different paces with different problems to deal with. You sound great and I am really proud of all your accomplishments. It couldn't have been easy for you. Keep in touch. Janice Missouri -Original Message- From: Nikki Macleod Sent: Saturday, January 17, 2015 6:37 AM To: tmic-list@eskimo.com Subject: [TMIC] Hey everybody, Hi everyone, It's been a while since I've been in here and I was wondering how everyone was doing. Any improvement. The last time I posted I was really messed up mentally. Suicidal and really low, a horrible time in my life. My life has changed dramatically since then, me and my fiancé of nearly 10 years broke up and I never though I'd say this but it was for the best. I am much happier. I live in my little bungalow with my dog Finlay who I've had since before TM and have 24/7 care. My depression is much better, it is now stable and under control. I am getting out and about much more especially since I recently got my new powered wheelchair. I am starting to not only love life again but love myself again. I also have more positive news, I have recently been experiencing some weird sensations in my left hand and some of my fingers which I can only describe as what feels like pins and needles. I figured this is a good thing considering it is numb until I get these episodes. I've also had episodes of feeling as though the soles of feet are burning like they are on fire. TM struck me on 15/02/2011. Doctors told me after a certain period of time that would be the end of the improvement. I believe that you may continue to improve way after that (I have). Has anyone else experienced anything like this? Nikki, Durham, UK. Sent from my iPad
Re: [TMIC] Meiling Caperton, Kanohe, Hawaii
May I jump in here? My memory was becoming totally unreliable and my relatives were starting to worry. I read up on it and discovered that Lyrics causes memory lapses and a fight mind. So I cut down until I couldn't any more. My memory is better now. Original message From: Pat Voorheis pjv1...@chartermi.net Date:03/12/2014 20:05 (GMT-05:00) To: James Berg molokai...@gmail.com Cc: Janice Nichols jannic...@gmail.com,Dalton Garis malugss...@gmail.com,Linda Egli le...@sbcglobal.net,transverse myelitis tmic-list@eskimo.com Subject: Re: [TMIC] Meiling Caperton, Kanohe, Hawaii James, Please tell me why you want to reduce to 50mg twice daily after consulting with Sandy. I was taking 100mg 3 times daily for about a year, but reduced to twice daily due to cost, not due to medical reasons. Is there something about Lyrica Sandy made you aware of that I should be concerned about? As you both have stated, we learn more from the TM Association than we learn from our doctors and Neuro's. Patti - Michigan On Mar 12, 2014, at 3:34 PM, James Berg molokai...@gmail.com wrote: Hey Dalton and everyone else, Aloha. I just want folks to know that thanks to Dalton letting me know about Lyrica, I've gotten control of my leg spasms. I'm taking 150mg. 2 times a day and suddenly a week ago my spasms stopped! Not having a neuro so consult with Sandy, yes our Sandy, has been counseling me about stopping the Lyrica and after discussing it with my GP I am doing a gradual reduction and will soon be down to the 50mg. Dalton has reduced to. Lyrica has been a god send to me. Thanks Dalton. Jim On Wed, Mar 12, 2014 at 7:48 AM, Janice Nichols jannic...@gmail.com wrote: Dalton - not offended!! So glad you are doing so well. Isn’t it strange the things we discover ourselves that help us? Doctors can still be so clueless about some things - on the other hand, they can save our lives! Janice From: Dalton Garis Sent: Wednesday, March 12, 2014 11:26 AM To: Linda Egli ; tmic-list@eskimo.com Subject: Re: [TMIC] Meiling Caperton, Kanohe, Hawaii Say, Folks! Nice to hear a voice crying in the wilderness. I am still here, also. By the way, someone hacked my Facebook so had to change my name, to Abdu’l-Hanif Al-Shukri – let them try to hack that one! So, if you remember me, for instance Meiling, and you want to “friend me, I’m still out there. Friends, I am down to just 50mg Lyrica 2x/day now, after a tough time of trying. Can’t go below that amount, discovering that is what is actually required to cover most of the pain. My memory is better and am less anxious about losing my mind to fog and dopiness. And went 28 days without a seizure, the longest time since getting the first one in 22 April 2010. Want to know what reduced their frequency? - not taking all those vitamin supplements anymore. It seems the minerals in them were interfering in some way with the nerves, especially magnesium. Visiting my mother in Massachusetts – she’s 97 – I forgot to bring any and went without for a week. Returning home I realized that I hadn’t had any seizures, and guessed that the only change was in not taking all those vitamin supplements. So I stopped, and sure enough, the seizures became very infrequent. Who knew? Now is the Baha’i month of the Fast, when Baha’is go without food and drink during the hours when the sun is in the sky, for 19 days, the last month of our year. (In our calendar there are 19 months of 19 days, with 4 or 5 inter calendar days just before the month of the Fast). We eat and drink after sunset or before sunrise but not during the hours of sunlight. Smoking is also prohibited, as it is considered a form of drink. The sick, the traveling, those nursing or pregnant, or under the age of 15 or older than 70 are not bound by the Fast; neither are those engaged in heavy labor. It is for those in good health, but others are not bound to it. While not bound by the Fast I am going without food during the hours of fasting but drinking tea or coffee or water whenever I feel the need. It is going OK, and does change the relationship to the material world and increase nearness to God. I am grateful to participate at even this level. I hope it doesn’t upset anyone if I talk openly about God. It seems our America is conspiring to wipe any mention of Him from any public discourse – a kind of propaganda in its own right if you think about it. I apologize, though, if anyone here is offended. Love and prayers, Dalton Abdu’l-Hanif Al-Shukri Dalton Garis Flushing, Queens New York, USA From: Linda Egli le...@sbcglobal.net Reply-To: Linda Egli le...@sbcglobal.net Date: Wed, 12 Mar 2014 07:45:18 -0700 (PDT) To: tmic-list@eskimo.com tmic-list@eskimo.com Subject: Re: [TMIC] Meiling Caperton, Kanohe, Hawaii Resent-From: tmic-list@eskimo.com Resent-Date: Wed, 12 Mar 2014 07:45:20 -0700 (PDT) Another TMer still here too.
