[TMIC] member of list passes away
Dear friends, I am Sarah Weil, Mary T Thompson's partner. Mary passed away on 6/14/11. I know she enjoyed getting these posts, she hadn't been well enough to use her computer for awhile, but she told me she tried to help other TM folks with a dose of info and reality checks when needed. Mary could be blunt at times, but her heart was always in the right place. She cared very much about others struggling with this disease. All the best to all of you. sincerely, Sarah
Re: [TMIC] personal problem - impaction
I had impaction-like troubles within months of TM showing up. Doc said to take Miralax - start at 17 gms a day and go up or down as it works for me. Works perfect for years now. She said the tm affected something called my mu factor in the GI tract which causes a generalized slowdown of the peristalsis. Taking or eating too much fiber can cause fatal or near-lethal bowel blockage or torsion because it sits too long in the GI tract, dries out and surgery is the only option then. I don't get cramping or loss of control with the miralax beyond what I ever had with senocot or even MOM - Original Message - From: Akua a...@artfarm.com To: Amanda Diskey adis...@yahoo.com; tmic-list@eskimo.com Sent: Wednesday, October 13, 2010 12:42 PM Subject: Re: [TMIC] personal problem First-- I am so sorry to read of your discomfort and the infuriatingly bad treatment. This is fixable and the doctors should be working on it. That you are in pain from it is untenable. Bowel movement problems could be evidence of something else, as well as being a symptom of TM. You must see a physician about this, before it becomes something more than it is. When you say you cannot stand-- are you in wheelchair? If so, do you use digital stimulation? If this impaction is what is making you unable to stand -- please call an emergency room This might be about mechanics and it could also be about chemistry. You should get someone to assess your diet: do you have any allergies, are you lactose intolerant? Is you liquid intake sufficient? Do you drink at least a quart of water a day? Are you getting sufficient fiber, veggies, fruit? But bottom line-- see someone today! Best of luck, keep us posted, Akua
Re4: [TMIC] A very scary observation
Ten years ago I lived alone. One morning I awoke unable to move. I had been on sick leave for a separate issue, so no one was expecting me anywhere. Four days later the neighbor thought something was 'off' around my place. She -a 60 year old - ended up climbing up to the second floor with the fire department because no one wanted to kiss my Rottweiler's hello, and they LOVED Carol. She came through the window, secured the dogs, let the cops in with guns drawn (never know when a rotti will jump up at you), then the blessed EMS took me away. They figured I was ready for last rights in another day. Anyway, ten years later, I cruise in my suv-wc, don't do much but punch around on the pc mostly. My lesion was at C-6, 'functional' quad - I can use my hands to a degree. I take tizanidine (Zanaflex), neurontin, klonopin for leg spasms, pain meds and others not directly related to TM. mt - Original Message - From: Janice Nichols To: tmic-list@eskimo.com ; Barbara Alma Sent: Sunday, September 19, 2010 12:35 PM Subject: Re: [TMIC] A very scary observation Wasn't necessary?!? Yaa. I was upstairs when my legs decided to give out and I yelled down to my husband that I think I have a problem.We have 14 stairs, so I butt walked down with Eddy right in front of me and me holding onto his jean pockets. Then he half carried me to the car and off we went to the ER. I could not have driven in that condition.In Missouri, if they hospitalize you, you don't have to pay for the ambulance. Janice From: Barbara Alma Sent: Sunday, September 19, 2010 2:49 AM To: tmic-list@eskimo.com Subject: [TMIC] A very scary observation Does anyone, other than me, find it very scary to think of somebody who finds that they no longer have feeling in their legs and feet but decides to drive themselves to the emergency hospital?? I myself was paralyzed waist to toes on both sides, so it wouldn't have even been possible for me anyway. However, I have read that at least 2 times recently on this site of people driving themselves. I really have a hard time imagining anyone not phoning for emergency services. My husband wanted to take me to the hospital right away when this happened to me. I stubbornly thought that it would pass, and after about an hour when it didn't, he called our son to come home. They then decided to call the fire department for help to get me down the stairs so he could get me to the hospital. We had about 10 stairs then to exit our home. I wasn't willing to risk he or my son falling and then them having problems as well. After they checked out my vitals and assured they were all fine, they assisted in getting me down the stairs and into his truck and Pete drove me to the hospital. This way we didn't have to pay for an ambulance since it wasn't necessary, yeah! Hugs, Barbara A in Auburn CA
Re: [TMIC] Medications
Keep in mind that many of the Canadian internet sites are just the overseas countries selling nothing but sugar pills. Unless you're a computer geek, you won't usually know the difference. Physically demanding as it may be, a trip to the great white north would be the way to go. But I'm no expert there. - Original Message - From: Patricia Cooley To: fr...@franksheldon.com ; 'Jill Posner' Cc: tmic-list@eskimo.com Sent: Wednesday, September 15, 2010 9:39 AM Subject: RE: [TMIC] Medications Before the U.S. had prescription insurance for social security people, we always bought my husband's scripts from Canada with no problem. There are several internet sites for Canadian pharmacies. Just google Canada pharmacies. At that time, the prices we about half what we would have paid in the U.S. We also had a local office that you could place your scripts. It is worth a try. Patti -Wisconsin From: fr...@franksheldon.com [mailto:fr...@franksheldon.com] Sent: Tuesday, September 14, 2010 3:13 PM To: Jill Posner; fr...@franksheldon.com Cc: tmic-list@eskimo.com Subject: Re: [TMIC] Medications Can a US doctor prescribe a drug only available in Canada and the UK? How does one buy it then (if not able to go to Canada to purchase it) Can it be obtained over the internet or some other way? I really don't know. My neurologist in Portland (Maine) says that he writes Rx to patients who then go to a pharmacy in Canada. My pain MD has no other US patients. Sorry F
Re: [TMIC] news of possible MS treatment
Need more info, please. I haven't heard. Thanks. - Original Message - From: Laura Beaudin laura.beau...@gmail.com To: tmic tmic-list@eskimo.com Sent: Wednesday, November 25, 2009 12:24 AM Subject: [TMIC] news of possible MS treatment I'm sure that most of you have heard of the latest theory about MS and how it might be resolved by simply enlarging some other-wise narrow blood vessels. Do you think this has potential as far as TM is concerned? Laura
Re: [TMIC] Wheelchair questions
Invacare Ranger II - rear wheel, loved this chair and I was more mobile then so I ran that thing all over and at 6-7mph. Quickie S-525 - rear wheel, okay, goes as fast as I do now anyway - Original Message - From: Kevin Wolfthal wolft...@optonline.net To: tmic-list@eskimo.com Sent: Tuesday, August 11, 2009 9:55 PM Subject: [TMIC] Wheelchair questions I am wondering who uses Power Wheelchairs on the TMIC? I cannot use a manual wheelchair because my hands are bad. Would you mind posting which chair you use, what you like or don't like about it, is it good for indoor or outdoor use or both? I am considering a Pride Go-Chair mainly because it is small and comes apart for travel. (note: this is not the same as a Go-Go Scooter) Also, is anyone familiar with the wheelchair provider Maxim Mobility in New Haven, CT? Good or bad? Thanks! Kevin
Re: [TMIC] PT worthwhile / Balance
Look, some folks gain, some lose with PT. Sometimes the effort results in a net loss. Stretching to keep limber, maybe. Workouts? No way. It might be different if I had access to a heated pool, but I don't so I won't sweat it. It works for you, that's great, but everyone has a different experience with this damn disease. To each her own. - Original Message - From: Trudy Ogilvie To: fr...@franksheldon.com Cc: Pieter and Heather ; tmic-list@eskimo.com Sent: Thursday, April 16, 2009 11:12 PM Subject: Re: [TMIC] Balance So does this mean you think that PT is meaningless? Why do my legs feel better after a work out than when I get up from my chair after 2 hours of answering e-mail, paying the bills, throwing out all the junk mail and making doctor appointments. Do you honestly feel that it's a waste of time??? Seriously my friend, I am interested in your opinion in whether PT is worth the effort. I thought you once said that exercise was very important for us?? I could be wrong, it's happened maybe once before :) Trudy P.S. You never did announce the winner of what to do about your falling down and really injuring yourself but I'll forgive you I guess it was much more serious than you thought originally. I am so sorry you wound up in the hospital. I hope you are doing better. On Tue, Apr 14, 2009 at 4:12 PM, fr...@franksheldon.com fr...@franksheldon.com wrote: Lack of Proprioception Proprioception is the ability to know where each and every part of your body is spatially. Before TM I typed 70 words per minute with few mistakes. I took the typing course in junior high school, then decided to be an English Major in College, and just got better and better. I took a 23 year breather while practicing medicine, then got back into writing (Typing) only to be struck down with TM 15 months later, Aug 2000. Within several months my typing was down to 5, five, words per minutes with constant mistakes. My fingers had lost the ability to fly out and down to hit the right key. I had, have, to look at my fingers, so don't see my mistakes on the screen. Practice does not make my finger do any better. I hope that helps F
Re: [TMIC] travel for medical purposes
I misplaced the original email on this subject, so I don't know who to address here, I apologize. I happened on this article today and thought it might be of interest. Regarding travelling abroad for serious medical care, or any medical care I guess, here is an interesting article the washington Post published: http://www.nytimes.com/2009/03/21/health/21patient.html?em - I would consider Googling and then calling on the person identified in this article as follows before I spent any money: But there are no comprehensive data that adequately compare overseas surgical outcomes or other quality measures to those used in the United States, said Dr. Sharon Kleefield of the Harvard Medical School and a specialist in overseas health care quality measures. No matter how high your hospital is rated, there are issues with regard to quality and safety when you travel for medical treatment, she said. [my highlight and bold] This is referenced in the above article but thought it was important enough to highlight: http://www.ama-assn.org/ama1/pub/upload/mm/31/medicaltourism.pdf New AMA Guidelines on Medical Tourism
Re: [TMIC] travel for medical purposes
correction: NY Times Health section, not the Washington Post - Original Message - From: gor...@earthlink.net To: tmic-list@eskimo.com Sent: Wednesday, March 25, 2009 10:19 PM Subject: Re: [TMIC] travel for medical purposes I misplaced the original email on this subject, so I don't know who to address here, I apologize. I happened on this article today and thought it might be of interest. Regarding travelling abroad for serious medical care, or any medical care I guess, here is an interesting article the washington Post published: http://www.nytimes.com/2009/03/21/health/21patient.html?em - I would consider Googling and then calling on the person identified in this article as follows before I spent any money: But there are no comprehensive data that adequately compare overseas surgical outcomes or other quality measures to those used in the United States, said Dr. Sharon Kleefield of the Harvard Medical School and a specialist in overseas health care quality measures. No matter how high your hospital is rated, there are issues with regard to quality and safety when you travel for medical treatment, she said. [my highlight and bold] This is referenced in the above article but thought it was important enough to highlight: http://www.ama-assn.org/ama1/pub/upload/mm/31/medicaltourism.pdf New AMA Guidelines on Medical Tourism
Re: [TMIC] Implantable pumps
Thank you. I appreciate the information very much. Even though you have the stim and I am going to get meds via this process, the technique sounds very similar. Thanks again. mt - Original Message - From: Janice To: lynnemye...@yahoo.com ; tmic Sent: Friday, March 13, 2009 11:40 PM Subject: Re: [TMIC] Implantable pumps I have told a couple of people, but I am going to tell anyone interested in what I use for nerve pain. I have a spinal cord stimulator implanted in my back by my Pain Management doctor. There is a needle-like thing put in the spine with leaders coming off of it. They are attached to a generator lower on my back (very small incision). I then use a magnet to turn the sensations on and off according to pain level, etc. It covers the pain before it can reach my brain telling me that I have pain. So, drugs are never used. This is expensive, but insurance covers a lot of it. This is definitely not the pump that some of you are talking about. As for spasms, which used to really keep me awake at nite, I take Neurontin and Baclofen at different times in the evening. That has taken care of that problem. Just thought I'd through this into the discussion. If any questions, let me know. Janice - Original Message - From: lynne myers To: tmic Sent: Friday, March 13, 2009 8:08 AM Subject: RE: [TMIC] Implantable pumps I have had my baclofen pump for about a year and a half now. I dont think it works any better at controling the spasms than the oral baclofen does, but I dont have the brain fog as bad as I did when taking the pills. The main problem I have with the pump is the cost. My insurance covers 80% of cost so every time I have to go in for a refill (every three months) it costs me about $350. Plus I have to drive about 150 miles round trip to have it filled and / or adjusted. The level I am at right now is not as effective as I would like, but when we tried turning it up I was unable to empty out my bladder so had to go back down. As far as infections have had no problems there. But the surgery itself was miserable. Between the almost 6 incision in the front where the actual pump is and the 3 incision on back where the catheter was inserted into spine I was in alot of pain for the first week. It is also very difficult to find cloths that dont cling to the pump and make it stand out like a sore thumb. The pump has to be replaced every 5 years, and when that time comes I don't think I will have another one put in, will just have them take this one out. Lynne From: gor...@earthlink.net [mailto:gor...@earthlink.net] Sent: Thursday, March 12, 2009 12:49 PM To: tmic-list@eskimo.com Subject: [TMIC] Implantable pumps I want to get some feedback on the implantable pump (intrathecal) that provides meds directly into the spine. Any problems with infection? Cost on Medicare - 80/20 or 100% ? Convenient to have, or a pain with upkeep, maintenance, whatever problems you may have had? Did it work (regardless of the med, but it would be nice to know)? I am looking at pain relief, and probably anti-spasmodic being delivered via this device. Thanks for your input. mt
[TMIC] Implantable pumps
I want to get some feedback on the implantable pump (intrathecal) that provides meds directly into the spine. Any problems with infection? Cost on Medicare - 80/20 or 100% ? Convenient to have, or a pain with upkeep, maintenance, whatever problems you may have had? Did it work (regardless of the med, but it would be nice to know)? I am looking at pain relief, and probably anti-spasmodic being delivered via this device. Thanks for your input. mt
[TMIC] Fw:OT civics quiz
Off Topic: It has been a bit slow here at times. Here is something to occupy you! I thought I would ace it but apparently both my working brain cells were otherwise occupied at the time. Let's see what we can remember from 4th grade: Subject: civics quiz http://www.americancivicliteracy.org/resources/quiz.aspx
[TMIC] Prealt
Prealt mimics the venom molecule of the Conus magus sea snail. It is not regulated as an opioid, good news if it works. It is delivered via intrathecal pump. They do not, of course, know how it works. Anyone on this and any comments on it if you are? The pain clinic offered this as an alternative to narcotics and for its potential effectiveness on central nerve pain.
Re: [TMIC] Bladder control
I am in diapers 24/7 due to incontinence of both types. I had a really fun test where they filled my bladder with liquid (water or saline - something like that) and monitored the signal to/from the brain that says PEEE. By the way, the method by which they monitored this was with a wire they stuck up between my ohemmm and my ahemmm - too fun. So I reached 900cc and still no signal. They stopped the test so I didn't get a stretched bladder. The doc had wanted to know why I was having problems with sudden geysers of urine and no warning. Point of all this was supposed to tell them how my bladder communicated because having too much urine collect in the bladder may cause it to back up into the kidneys and harm the kidneys to the point of potentially requiring future dialysis or transplant. They set me up with catheters and all the related supplies so I could drain my bladder at regular intervals and prevent back-ups. This hasn't been too successful because I can't feel my hands and can't feel down there - making getting the cath in a very interesting activity. Your husband is obviously getting a signal to urinate, just too frequently. This could be tm or something else, but there are meds that can reduce the number of trips he has to make, if this is indicated. Best wishes. - Original Message - From: Sally Wilkinson To: tmic-list@eskimo.com Sent: Thursday, January 29, 2009 9:40 AM Subject: [TMIC] Bladder control Hi Guys Am I right in thinking that bladder control can be an issue with TM? My TM husband thinks its not, and that his visits to the loo 7-10 times a night and needing to suddenly pee urgently at any time have nothing to do with his TM! Kind regards Sally in the UK Sally Wilkinson Business Development Manager Genesis Design The Barn Ipsden Oxfordshire OX10 6AS +44(0)1491 682277 sally.wilkin...@genesisdesign.uk.com
