Re: [TMIC] Pain management
I have been prescribed 2 oz of pot per month ...the problem is that the legal pot is $450 per oz. But I do agree that pot truly helps!!! Rob in NJ Sativex is sprayed under my tongue. I use it two or three times a day, with little euphoria. It's a legal prescription drug, in Canada and soon to be here in the U.S.Take Care F.
Re: [TMIC] Pain management
Hey, Pumps don't allways work. Don't let them talk you out of pain. Consider Cannabis, or Sativex if you live in Canabis Try things Frank Who takes Nortriptolin, Dextromethorphin, Phenobarbitol,Sativex; uses self hypnosis/meditation.
[TMIC] Provigil
Greetings from Frenchman's Bay, Maine, I have used Provigil for a long time. At first I took it everyday, But then, after two or three years, I started having weird dreams, feeling depressed, feeling as if I'd had too much coffee. So, I stopped the Provigil, and began going to sleep right after supper. Some days I'd want to go to sleep before supper even though I'd had a one and a half hour nap in the early afternoon, But my dreams went back to normal, depression gone, I began to feel normal As in normal TM patient. So, now I use Provigil only when going out in the evening. I take the provigil right after my afternoon nap. Take Care Frank
Re: [TMIC] have any of you ever heard of this
Crazzy, The woman was CRAZY, a psycho, some kind of psychotic. Maybe caused by Hypnosis. My Clinical Expertise at work---No Charge. Free/Helpful advice: We with TM get neurological constipation, so we respond better using prunes than with bulking agents Stay Regular fs
Re: [TMIC] Is anyone here?
Is anyone here? Actually, some people are outside gardening, some people are working on their boats(getting them ready to be launched for the season), some people have been traveling to and from a graduation, some have been just sitting outside listening to the birds, grass and trees singing songs of spring.. I could go on, and on. pH
[TMIC] StemCells, Inc. to Present at 2012 BIO CEO Investor Conference
StemCells, Inc. to Present at 2012 BIO CEO Investor Conference NEWARK, Calif., Feb. 8, 2012 (GLOBE NEWSWIRE) -- StemCells, Inc. (Nasdaq:STEM) announced today that President and CEO Martin McGlynn will present an update on the Company's programs and operations at the 14th Annual Biotechnology Industry Organization (BIO) CEO Investor Conference to be held February 13-14 in New York City. Mr. McGlynn is scheduled to speak at 11:00 a.m. Eastern Time on Tuesday, February 14. A live webcast of the presentation will be available through the Company's corporate website at http://www.stemcellsinc.com under the Investors section, and may also be accessed directly at http://www.veracast.com/webcasts/bio/ceoinvestor2012/26207291.cfm. Interested parties are encouraged to connect to the website at least 15 minutes prior to the presentation to ensure adequate time for any software downloads that may be necessary. A replay will also be accessible through the Company's website.
[TMIC] Austria has approved !!
Sativex® has received regulatory approval in Austria as a treatment of spasticity due to Multiple Sclerosis (MS). The launch of Sativex® in Austria is expected to take place during 2012 following completion of the national pricing and reimbursement process. Sativex® will be marketed in Austria by GW's marketing partner, Almirall S.A.
Re: [TMIC] re pins and needles
my feet became unanalyzed recently I now experience pins and needles under my feet. is there anything that can be done to neutralize it? Gerry, I find that Bourbon works best to decrease pain and pins/needles. Bourbon mixed well with mint, but few medications. Happy Holidays. Oh, cutting your feet off actually intensifies the discomfort (phantom limb pain). Frank
[TMIC] Brain lock ?
-Original Message- where my brain just locks up and I become stiff from head to toe, lose speech and coordination, That happens to me too, especially when I'm talking to an attractive woman ! WaBamBam...Boing pH
[TMIC] Re: Brain lock ?
Seriously, That does happen to me. I usually am able to sit down , before I fall down. My mind slowly shuts down. Too much data- can not compute, overloading occurring. I stay seated for several minutes, then I'm able to resume my activities. My GalPal used to take these events personally, but now she understands that she needs to help me by taking control, stop asking questions, Etc. My lesion is at C5-6 which is pretty high up the cord and may influence the Pons. I'd recommend googling Pons. It's a pretty interesting part of our brains. F
[TMIC] Sativex (cannabinoid) news
Sativex® successfully launched in UK, Germany, Spain and Denmark - strong initial uptake in key German market recently reported by marketing partner, Almirall · Licence agreement signed with Novartis to commercialise Sativex in Australasia, Asia (excluding Japan/China), Middle East (excluding Israel) and Africa. $5m upfront payment received. Regulatory submission filed in Australia. · Sativex approved in Czech Republic and further approvals in Italy, Sweden, and Austria expected in the coming months. Launches in these countries expected in 2012 · Second European Mutual Recognition Procedure submission procedure now underway with aim to expand approvals to up to ten additional European countries in 2012 (see separate release today) · Expansion of facilities and staff to support sales growth and RD activity
Re: [TMIC] Sativex (cannabinoid) news
and what about us in the U.S.? Why should we be excluded? Are the pharmaceuticals afraid of the competition? The U.S. has stricter rules about new drugs F
[TMIC] Sativex
Porton Down, UK; 18 July 2011: GW Pharmaceuticals plc (AIM:GWP) today announces the launch in Denmark of Sativex® oromucosal spray as a treatment for the relief of spasticity in Multiple Sclerosis (MS). Regulatory approval for Sativex® was granted in June 2011 by the health authorities in Denmark. Sativex® is also approved and marketed in the UK, Spain and Germany. Launch in Sweden is expected before the end of 2011 with additional launches in Italy, Czech Republic and Austria expected in 2012. Let's all move to Denmark!! F
[TMIC] HELP- I don't know how to get off this website
Jill, I've been on this so long that I don't know what I'd do without this group, so have forgotten the secret code to leave. But as with all Questions, Ask the group ! Good Luck in all your adventures. Send Money when you get a job. pH
Re: [TMIC] Fwd: Marine Speaks
Ya'll, Usually I'd say, It's only the Bourbon talking. But with a Marine, It's only the testosterone talking. Semper Fi F
[TMIC] Sativex
GW Pharmaceuticals plc (AIM:GWP) today announces that Sativex® oromucosal spray has been approved in the Czech Republic as a treatment for spasticity due to Multiple Sclerosis (MS). This approval follows GW's announcement on 22nd March 2011 that the European Mutual Recognition Procedure had successfully completed with all six countries involved recommending approval. The countries involved in the MRP were Germany, Italy, Denmark, Sweden, Austria and the Czech Republic. The Czech Republic is the first of these countries to approve Sativex. The remaining countries involved in the MRP are expected to approve Sativex in the coming months.
[TMIC] Agreement for Novartis Pharma AG to commercialise Sativex®
Porton Down, UK; 11 April 2011: GW Pharmaceuticals plc (AIM:GWP) today announces that it has entered into an exclusive licence agreement for Novartis Pharma AG to commercialise Sativex® in Australia and New Zealand, Asia (excluding Japan, China and Hong Kong), Middle East (excluding Israel/Palestine) and Africa. Sativex® has been developed as a treatment for spasticity due to Multiple Sclerosis (MS). It is anticipated that regulatory filings for Sativex® in MS will begin in some of the countries in the above region during 2011. Sativex® is also in Phase III clinical development for the treatment of cancer pain.
Re: [TMIC] Shingles
Greetings Lori, The treatment for shingles since the 1980's has been a tapering dose of Prednisone ( the definitive journal article was in the New England Journal of Medicine but not all MDs read the journal). Get the prescription from your MD and start ASAP. You'll feel relief within three days. Creams and ointments don't help much. Take the Prednisone till pills are all gone!! Shingles exists both on your skin but also in your peripheral nerves, perhaps all the way back and in the spinal cord that is why you may feel discomfort/pain over usually numb dermatomes. I will pray for your speedy recovery. (Prayer always helps.) Take care Frank
[TMIC] Drinking with meds
How can you two drink with pain meds? I get knocked on my butt! Janice Janice, That is exactly what happens to me!! F
Re: [TMIC] Connected?
When I get pain, I focus on the specific spot where the pain is putting on a show, and I say to it: stop it, stop it, stop it..!!! When my pain acts up, I use DRUGS, and if that doesn't work, I use BOURBON pH
Re: [TMIC] Connected?
Yes, it has been quiet, but not as quiet as the time in 2003 or was it 2004? Change of seasons affects us all. Blame the quiet on that Woodchuck, or whatever. Take care of yourselves Frank
Re: [TMIC] Bladder
BobbyJim, I had lots of probems with my bladder/prostate when I first was afflicted with TM, then I was started on Cannabis every day, and within six months I was having much less problems. I went to my Urologist who found that my prostate was smaller, and my cystometrogram (bladder pressures) were almost normal. She wrote a letter to the Urologist Journal. I go every three months to get my teeth/Gums/mouth hygienized because I can't floss as my fingers don't work. The last time the hygienist said my gums stayed so healthy despite the plaque build up. I asked if the oral/under the tongue sprays of cannabis could be helping protect me from gingavitis. She had no idea. So, I recommend using cannabinoids every day! Take care F
Re: [TMIC] Dextromethorphan
Greetings to all Dextromethorphan is right handed Morphine, and works like morphine but works on different receptors. As far as I know it is not addictive. I use 60 mg. every 12 hours (upon arising and at bed, 8am and 8pm). If you take more, you can/will have hallucinations ( Not Good). In Maine Dextromethorphan is legal, but if you dislike drinking lots of bottles of cough medicine you need a prescription that you take to a compounding pharmacy ask your local pharmacist, they will know which pharmacy in your area is Compounding Actually, I learned about Dextromethorphan in a journal so bought two bottles of cough syrup to try it out. I purchased the cough syrup that only had Dextromethorphan as the active ingredient- If you ingest other active ingredients you will most likely DIE. To figure out how much liquid you need to swallow, you will need a knowledge of ALGEBRA. DON'T GUESS. GOOD LUCK F
Re: RE [TMIC] OT: REQUEST
John, If you've been taking hydrocodone for two years, you probably are addicted (What ever that means) to it. I would recommend going to a real pain clinic. Find a pain clinic connected to a large teaching hospital- a hospital that is intimately connected to a medical school. The first clue that you are in the right place will be that the doctor will have, or will line up, a TEAM consisting of physiotherapist, occupational therapist, psychologist, maybe a social worker and the doctor and nurse. Opiods don't work very well with Central Neuropathic Pain. The combination than works for most of us is : Old fashoned anti-depressants like Nortriptyline, anti epileptic medication like phenobarbitol ( much fewer side effects than neurontin, and less expensive), and Dextromethorphan. Dextromethorphan is used for stopping a cough, just like hydrocondone, but it is the same as morphine but right handed. Woh, Woh, stop right there. So it's the same as morphine which is at least TEN times as strong as hydrocodone, but is nonaddictive. How does that work?? Look at your hands, count the bones. You will realize that, if you are normal, you have the same number of bones in each hand, but your hands are different- you have a right and left hand. Morphine is left handed,and so works well at stopping some sorts of pain. Dextromethorphan is better at stopping other types of pain. You take different doses of Dextromethorphan than Morphine. The maximum dose is 60 mg. twice a day, if you take more you may start having hallucinations. You may not know if I'm telling you the truth. I am not sell medication, nor am I offering salvation through prescription pills. I used to be a family doctor (M.D.,C.M.)trained at one of the best medical schools in the world ( Not Caribbean, but Canadian), have had T.M. for ten and a half years. I have looked for and found some of the best specialists who care for me. I also read the appropriate medical journals to learn of new techniques before they are even prescribed- I try to make every physician appointment a teaching event for both myself and the doctor. Good Luck on your journey. If I can help, email me. Frank
[TMIC] Stem cell treatment for spinal cord lesions
StemCells, Inc. Receives Authorization to Conduct World's First Neural Stem Cell Trial in Spinal Cord InjuryPALO ALTO, Calif., Dec 7, 2010 (GlobeNewswire via COMTEX) -- StemCells, Inc. (Nasdaq:STEM) announced today that is has received authorization from Swissmedic, the Swiss regulatory agency for therapeutic products, to initiate a Phase I/II clinical trial in Switzerland of the Company's proprietary HuCNS-SC(R) product candidate (purified human neural stem cells) in chronic spinal cord injury. The trial is designed to assess both safety and preliminary efficacy in patients with varying degrees of paralysis who are three to 12 months post-injury, and will progressively enroll patients based upon the severity of injury. Enrollment is expected to begin in early 2011.
[TMIC] stem cell treatment for spinal cord lesions
News release: StemCells, Inc. Files to Conduct Neural Stem Cell Trial in Chronic Spinal Cord InjuryPALO ALTO, Calif., Nov 15, 2010 (GlobeNewswire via COMTEX) -- StemCells, Inc. (Nasdaq:STEM) announced today that is has filed an application with Swissmedic, the Swiss regulatory agency for therapeutic products, to conduct a clinical trial in Switzerland of the Company's HuCNS-SC(R) purified human neural stem cells in chronic spinal cord injury patients. If authorized, the study would enroll patients who are three to 12 months post-injury. With this filing we have taken a tangible step to broaden the clinical development of our HuCNS-SC product candidate beyond the brain and into the spinal cord, said Martin McGlynn, President and CEO of StemCells, Inc. This exciting initiative is supported by extensive preclinical research demonstrating the ability of our proprietary cells to restore lost motor function when transplanted in the chronic spinal cord injury setting. The prospect of extending the treatment window to months or longer following injury would mean that a much larger population of injured patients could potentially benefit from such an approach.
Re: [TMIC] arghhh
one of the most aggravating parts of this lifestyle for me is this season of commercialism,everything on tv or conversation is about having money to spend when i have not any. Im always having to come up with a topic that has meat without money. Money is one of my favorite subjects. I believe you should plant a 'Money Tree when you are young, and gather the cash as it falls off. When the tree is young, it might only shed coins. I recommend leafing the coins on the ground so as to nourish the tree, helping the tree to grow. As the tree grows, it will begin to shed larger amounts of money, so you leaf some dollar bills but take a few. With time and compound interest, there comes a time when you can rake up all the bills. If for some reason you didn't get to plant a money tree, you could sell Avon or Amway. I know people who have made millions of dollars selling soap or cosmetics. One person is a blind paraplegic! F
Re: [TMIC] {TMIC}sweating
I got tm at the thoracic level (T4-5),but when I perspire on my face,one side gets red and moist,the other stays pale and dry. WoW- what a stumper I will look in my books. Question?? On which side of your spinal cord is your lesion ( for instance my lesion is at C5 +6 on the right, dorsal column) Frank
[TMIC] trick or treat ???
Greetings, This is one of the worst times of the year for TM and other similar diseases. Please note that Halloween is one of Four astronomical holidays that are half way between the Solstice and the Equinox, so the days are beginning to rapidly change. Can you name the other three Holidays that are half way between the Solstice and the Equinox??? F
[TMIC] barametric pressure ?
Yes, I, too, have noticed when the pressure was moving down or up. We could become weathermen. F
Re: [TMIC] Brown Sequard Syndrome
Emily, TM causes the brown-sequard syndrome, but other diseases cause the syndrome too. F
Re: [TMIC] handicapped placard
Greetings from Montreal- where there are very few handicapped spots. I always carry a point and shoot camera in my Hand bag. When I see someone parking in a handicapped space here or in Maine, I take a picture of the auto, its license plate, and the handicapped sign (All in one picture that includes a time and date), then when I get home I email it to local police with location. Just like a speed camera!! They get a ticket, and if they go to court, I'll be there before my good acquaintance the judge. F
Re: [TMIC] 6th anniversary
I miss most being able to using my hands easily I also have problems with my fingers and hands. The diagnosis is loss of Proprioception. Most of us get some loss, others get a lot. It has decreased my speed on the computer, made walking on gravel or the lawn difficult, and causes me to fall if I don't watch what I'm doing. The official diagnosis is Sack's Syndrome. Named after Oliver Sacks, a neurologist at Columbia MedicalCenter NYC. Dr. Sacks writes books such as the man who mistook his wife for a hat. I believe Google has the book available through it's books depository ( Google is copying all books of importance into it's archives. take care F
Re: [TMIC] 6th anniversary
Have you seen any study of arthritis being worsened by Myelitis? I know of no connection between degenerative arthritis and myelitis. Rheumatoid Arthritis is an auto-immune disease, so there could be a connection, positive or negative, with myelitis. F
Re: [TMIC] Fwd: Good Idea!
RIGHT ON, Emily !! F
Re: [TMIC] question
Chantal, Where in Canada do you live? I live part time in Montreal, and go to McGill University, Montreal General Hospital, Pain Clinic. Dr. MarkWare started me on Sativex which is used for pain, spasm, and alot of the other problems of TM. Take Care Frank attachment: anabnr2.gifattachment: Nature Bkgrd.jpg
[TMIC] TM Caregivers Group??
Emily, That is a great Idea !! How would you like to start the group? I know my caregiver would interested Take Care Frank attachment: image001.jpg
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] Medications
Doesn't help those of us who are not connected! I drive 250 miles to Montreal, 250 miles back to Freeport,ME I pay $640 every three months Am I connected?? I think Not 11 F
Re: [TMIC] Medications
Janet, If you have pain that medication can't handle, ask your M.D. for a prescription of Sativex, subungal spray, one spray as needed every 8 to 12 hours, 4 spray bottles per box, Disp. 0ne (1) box every 2 to 3 months. Sativex is a distillate of cannabinoids made in the U.K. and now paid for by Canadian Medicare. Not being Canadian, I still pay $640.00 per box- but it's worth it. Take care F
Re: [TMIC] overdoing it
Hi, all, I find that taking 4 hours (Noon to 4:pm) to relax, meditate, perhaps to dream, helps rejuvenate my body and mind. I use an old Barkalounger that elevates my legs, lowers my heart and brain. I also have told everyone that this is my time, no phone calls, etc. I know this helps, if it doesn't work for you, you are not relaxing enough. Frank
Re: [TMIC] overdoing it
Hey, I am slowly adapting to the constant pain and all of the other sequelae of this affliction. I am slowly moving into my brain, leaving my body- I am living in my mind. My body is becoming just some sort of biological device in which I exist. The pain is associated with, connected to, this biological vessel, and so is less important to me. My two cents Frank
Re: [TMIC] Memory Loss
Yes, The memory problem is caused by many things, but mainly for me because I'm aways in pain so my mind attends to the pain first and forgets the rest. i also have loss of proprioception so my mind is constantly wondering where the parts of my body are. I hope this muddies the water. F
Re: [TMIC] lLoss of Proprioception
Dear Janice, I never knew you cared. Frank
[TMIC] stem cell treatments- the next step
StemCells, Inc. Reports Breakthrough Using Human Neural Stem Cells to Restore Motor Function in Chronic Spinal Cord InjuryNewly Published Study Shows Long-Term Reversal of Hind Limb Paralysis in Spinal Cord Injured MicePALO ALTO, Calif., Aug 19, 2010 (GlobeNewswire via COMTEX) -- StemCells, Inc. (Nasdaq:STEM) announced today the publication of new preclinical data demonstrating that the Company's proprietary human neural stem cells restore lost motor function in mice with chronic spinal cord injury. This is the first published study to show that human neural stem cells can restore mobility even when administered at time points beyond the acute phase of trauma, suggesting the prospect of treating a much broader population of injured patients than previously demonstrated. This groundbreaking study, entitled Human Neural Stem Cells Differentiate and Promote Locomotor Recovery in an Early Chronic Spinal Cord Injury NOD-scid Mouse Model, was led by Dr. Aileen Anderson of the Sue and Bill Gross Stem Cell Research Center at the University of California, Irvine (UCI). The paper was published yesterday in the international peer-reviewed journal PLoS ONE, and is available online at http://dx.plos.org/10.1371/journal.pone.0012272. In this latest study, StemCells' human neural stem cells were transplanted into mice 30 days after a spinal cord injury that results in hind limb paralysis. The transplanted mice demonstrated a significant and persistent recovery of walking ability in two separate tests of motor function when compared to control groups. These results are particularly significant because it is the first time that human neural stem cells have been shown to promote functional recovery in a chronic spinal cord injury setting, which is characterized as a point in time after injury in which inflammation has stabilized and behavioral recovery has reached a plateau. In humans, the chronic phase typically does not set in until several weeks or months following the injury. These exciting results demonstrate an expanded window of opportunity for human neural stem cell intervention in spinal cord injury, stated Stephen Huhn, MD, FACS, FAAP, Vice President and Head of the CNS Program at StemCells, Inc. 1.3 million individuals in the U.S. are living with chronic spinal cord injury, and this latest study provides additional evidence that the use of our human neural stem cells may be a viable treatment approach for them. The strong preclinical data we have accumulated to date will enable our transition to a clinical trial, which we plan to initiate in 2011. Aileen Anderson, Ph.D., Associate Professor in the Departments of Physical Medicine and Rehabilitation, and Anatomy and Neurobiology at UCI, added, Human neural stem cells are a novel therapeutic approach that holds much promise for spinal cord injury. However, published research to date has generally focused on the acute and sub-acute phases. As part of our long-standing collaboration with StemCells, we have pursued a thoughtful and deliberate research strategy to establish the groundwork necessary to advance this cell-based approach into the clinic. This latest study builds on the extensive work we had previously published in the sub-acute phase of injury, and offers additional hope to those who are paralyzed or have impaired motor function. About the Sue and Bill Gross Stem Cell Research Center The Sue and Bill Gross Stem Cell Research Center promotes basic and clinical research and training in the field of stem cell biology at the University of California, Irvine. The Center is a leading international institution in stem cell research and clinical applications, consolidating existing research strengths and clinical initiatives at UCI and serving as a nucleus for growth via collaboration and new recruits. The Center provides an organizational structure for all areas of stem cell research, contributes to premier graduate training, maintains a core stem cell facility and equipment resources, hosts guest researchers and annual meetings, and contributes to the research and dialogue on the policy and ethical issues related to stem cells. For more information, see http://stemcell.uci.edu/index.cfm. About StemCells, Inc. StemCells, Inc. is engaged in the research, development, and commercialization of stem cell therapeutics and tools for use in stem cell-based research and drug discovery. In its therapeutic product development programs, StemCells is targeting diseases of the central nervous system and liver. StemCells' lead product candidate, HuCNS-SC(R) cells (purified human neural stem cells), is in clinical development for the treatment of two fatal neurodegenerative disorders that primarily affect young children. StemCells also markets specialty cell culture products under the SC Proven(R) brand, and is developing stem cell-based assay platforms for use in pharmaceutical research, drug discovery and drug
Re: [TMIC] stem cell treatments- the next step
Patty, YES. This study is for us!! All the studies up to the current one have been on young rats with recent spinal cord injury. Note also who this email came from, StemCell Inc. a US corporation listed I believe on the NASDAC exchange ( I own shares in this corporation). This is a for-profit corporation that wants to use these treatments to treat HUMAN beings in order to make money. I don't know anyone with a paraplegic rat, other than Dr. Kerr. Take care F
Re: [TMIC] MS drugs for TM
Kelly, Very few TM patients respond to MS drugs. Mostly MS patients respond, though. I would get connected to the neurology department of a major teaching hospital. Where do you live? I can be your Google to get you to the closest best hospital. (I used to be a Family Dr., now am a professional patient.) I'm sorry we had to meet this way. I was afflicted with TM for just over 10 years and discovered this site 9 years ago. Take care Frank
Re: [TMIC] stem cell treatments- the next step
Pat, Of course, it will be experimental till the daughter of the insurance co. CEO develops the affliction. We used to throw bean suppers, Lobster bakes, Casserole suppers, sold chocolate bars, washed cars... We were able to raise $1,000 a week towards some local person getting experimental treatment. Lawyers also like to get involved in talking some sense into the insurance company. A photo on page one of the local paper more than repaid the time they contributed. Don't give up hope F
Re: [TMIC] pain management ideas
Hi All, I'm not going to go over my pain meds ( Nortriptyline, Vitamin D, Dextromethorphan, Cannabinoids, Phenobarbital) again. My pain never really goes away unless I add a couple shots of Bourbon or other high test drinks. I am able to keep my pain at #2 or 3 with meds. What really helps is meditation (self hypnosis). I usually listen to quiet classical music, close my eyes and take myself away to some secluded beach in the Exuma chain of islands. My pain will get as low as #1. I am told that there are CD's in which guided imagery is used to take you into self hypnosis. I hope this helps. F
Re: [TMIC] Meds question
Craig, Most neuropathic pain responds poorly to opiod medication. The pain is decreased by using: Tricyclic Antidepressant- Amitriptyline or Nortriptyline which I use ( 50 mg in AM, 100 mg at bed) Antiepyleptic: I use Phenobarbital 15 mg in AM, and 45 mg at bed Dextromethorphan 60 mg twice a day Cannabinoids: Medical Marijuana or SATIVEX ( If you live in Canada or the U.K.) Vitamin D: 1000 units a day I hope this helps. My Pain Doctor is one of the top Pain MD's in the world. Dr. Mark Ware is associated with McGill Universities' Montreal General Hospital's Pain Clinic I hope this helps Frank
Re: [TMIC] Meds question
Don?t forget Lyrica, which is pregabalin Lyrica is either an antibiotic or an antidepressant. It probably is considerably more expensive than Nortriptyline or Phenobarbital. F
Re: [TMIC] TM Info request
Welcome Craig, The end of this week will be my tenth anniversary. A bit about myself, I practiced family medicine for 25 years, then retired- the first mistake- then had too much fun, then was stung by a mosquito, Contracted a virus which mimicked (sp?) the covering of my spinal cord nerves. So my body attacked my spinal cord. I now have a small pea sized volume of demyelination at the 6th cervical region, on the right side. I walk poorly, have constant pain from my upper chest to the bottoms of my feet. My symptoms are made worse by change in barometric pressure, heat, cold, stress (Meditation/prayer helps enormously)... I could go on and on...under the pain is a numb tingly feeling. I take a lot of lot of Meds: Nortriptyline, Phenobarbital ( I know Marilyn Monroe killed herself with this, but I'm not suicidal except on Monday evening [ just kidding]), Marijuana spray obtained by Rx from a pain Dr. in Montreal, Vitamin D and Dextromethorphan. If you need help feel free to email Frank
Re: [TMIC] TM Info request
YES with any spinal cord injury (TM is classified as such) have a hard time regulating there body temperature My left side temperature is 10 higher than my right during the summer, but 10 degrees lower than the right during the winter. They tell me when both are the same temp, I'll be dead! I wear a velvet glove on my left hand from time to time. I'm not sure it helps. Time to make dinner! Frank
Re: [TMIC] Sativex
Greetings from the foggy coast of Maine. I am using Sativex three times a day (Every 8 hours). I relieves, actually decreases pain from #9 to # 2-3, decreases those little spikey pains that come and go (secondary to muscle spasms?), decreases spasms (BIG SPASMS). I am lucky (?) as my band is not concentrated, but goes from my upper chest to the bottom of my feet. Have your MD email me. I'll tell him. Frank Sheldon M.D., C.M.
Re: [TMIC] Iron traped in brain -
Sounds BOGUS to me. Iron has nothing to do with TM- It's Auto-immune Inflammatory Demyelination- with no indication of the presence of IRON. Now, I'm on Vacation, so I don't want to be bothered by other's problems. I have enough of my own. My daughter's getting married next week and can't find enough goats ( are sheep acceptable?)or blankets. Sorry to bother you all with my problems, pHranq3ue
Re: [TMIC] Baclofen Dosage
Bladder problems?? Don't we all have some abnormality from TM. I have a flaccid/spastic bladder- It fills with an enormous amount of urine, then takes two or three times to empty. Also, When I have to urinate, I have to really urinate- no waiting F
Re: [TMIC] This link was on the Forum today...surgery for 4-yr old with TM - WoW
I agree, It doesn't make sense since TM by definition is demyelination of a part of the spinal cord. F
Re: [TMIC] anyone out there?
S, it's the summer solstice. everyone's gone to Stonehedge, gotten drunk, gotten up to see the sun rise, gone back to sleep... is it thursday yet? pH
Re: [TMIC]I tried Marinol too
Sativex is only available in Canada, Japan and Spain NOW, but it won't be long till it's available here in the US. The drug company is doing the testing to gain certification here. Sativex is available in Boxes of four small spray bottles. Each bottle has 51 sprays, each equal to one cannabis joint, cost is $640 for 204 doses. It has been a long time time since I purchased any Cannabis so I have no idea if this is a Good Deal. But I know Sativex works every time, is not contaminated, is legal traveling the world crossing borders. Sativex is a prescription drug. I see Sativex taking a lot of demand away from organic cannabis. I read an interesting article in the New York times that ssaid that Medical Cannabis use is impacting and lowering the price of cannabis on the street in California- and As goes California so goes the nation. F
[TMIC] Thanks to Obama
You had mentioned in the past that you could only use Sativex while in Canada, and you could not take it across the border back into the U.S.Has that now changed? Yes with the relaxation of Medical Cannabis federal actions, and also many states decriminalizing or at least thinking about decriminalizing cannabis. Dealing with illegal Cannabis use costs lots of time and money, plus many law inforcement personel are users themselves. They are just starting all sorts of experiments on cannibis. Did you know that using cannabis decreases the number of viral infections you have, and I can attest to that. It will keep me from benign prostatic hypertrophy, and who knows what they will find next week. You must realize that Cannabis was criminalized in 1937-8, by congress at the urging of Mr. Dupont of chemical company and Mr. Hearst of Paper and paper products. They were fearfull of modern usage of Cannabis instead of trees ( Cannabis can be used as fuel, and regrows much more quikly. My fingers are giving up Google- hearst,dupont,cannabis. Anyway, the USA is in the process of letting research be done on this age old medication, the first experiments since the 1930's F
Re: [TMIC]I tried Marinol too
Marinol didn't work, Then I travelled to Montreal, to the McGill University Health Center within the Montreal General Hospital to Dr. Ware on the 19th floor where he tried me on sativex. One spray under my tongue decreased my pain by 75% within ten minutes. SATIVEX lasts longer than Cannabis and has a brief period of slight euphoria. Sativex has changed my life. F
Re: [TMIC] health stuff
Kevin, At what level is your T.M.? Frank
Re: [TMIC] Re: [Transverse Myelitis Support] Anniversary.................
__ Wow, My 10th anniversary is coming up, July 31st. But, WoW, My daughter is getting married on that day on Belle Isle. on Lake Muskoka in Ontario, Canada. It's amazing how time can fly. F attachment: 01_tile.jpgattachment: 01_side.gif
Re: OT: [TMIC] Amytretaline (sp)
spread sheet for ALL my medications ALL my vitamins Todd, That is a great idea. My assistant keeps a notebook record of my meds A spreadsheet is so much better, so before an appointment just print out a copy or copies. Very Cool. I often will do a HPI (History of Present Illness) listing new complaints, possible therapies, Etc. I keep an open MS.Work document on my desktop for recording things quickly, then print it out before an appointment. Thanks for the great idea. F
OT: [TMIC] Amytretaline (sp)
Hi Gang ! , Has anyone been keeping count of the number of different spelling of that drug, you now the one in the subject line?? I count at least half a dozen. I hate it when you can't even know the spelling of one of your meds. You need to be spending more time reading your medicine bottles. You think I'm going to bail you out by spelling that mother of a word. H*ll no !! I'm really in a bad mood, because of all my allergies being fired up by Spring time. Love you all pH
Re: OT: [TMIC] Amytretaline (sp)
I was on Amitriptyline for one week when I was being medicated. I was switched to Nortriptyline and still take 50 mg in the morning and 100 mg at bed. I take Phenobarbital 15 mg in AM and 45 mg at bed instead of Neurontin, and Dextromethorphan twice a day, SATIVEX twice a day, and VIT D. Hope that helps F
Re: [TMIC] TMIC Neurontin--does it exhaust you
Are there other options? Yes, I take Phenobarbital 15 mg in AM and 45 mg. at bed time instead of Neurontin or Lyrica (Both tried and failed). I go to Dr. Kerr along with visits to Dr. Ware at the Montreal General Hospital Pain Center where I receive excellent care. F
Re: [TMIC] Weather
Greetings Dear-Ones, The weather affects [ note the spelling] me too. I have started building a machine to control the weather so I will no longer have to increase my medication. I found the plans on the internet- cast off by some ultra-secret government agency I suspect. When I finish, I'll be able control the world, or at least my world!! Hugs and smooches to all pH
Re: [TMIC] shingles
Betty, et al, I've just returned from sunny, but chilly Florida. The treatment for shingles has, since about 1985, been low dose cortisone (Prednisone). A team of doctors at the Univ. of Washington (seattle) did a double blind experiment that was broken by the patients. Patients were given placebo or prednisone. After one week the placebo patients could see the members of the prednisone group were all better. This study was published in the New England Journal of Medicine. Pain pills are only needed for the first few days. Hope that helps F
[TMIC] OT Pie Recipes OT
Thank you all for the recipes. If the pie book gets published, all donators of recipes will receive a signed copy, and all profits will go the TMA. F
[TMIC] OT- I'm looking for Pie- OT
Dear Fellow Travelers, I have decided to write a cookbook. I have started with Pies. If anyone has a great pie recipe, would you share the recipe with me?? Your name would be in my book Frank
[TMIC] STEM cells
PALO ALTO, Calif., Jan 25, 2010 (GlobeNewswire via COMTEX) -- StemCells, Inc. (Nasdaq:STEM) announced today the launch of GS1-R(TM), the first commercially available medium to enable the derivation, maintenance and growth of true (germline competent) rat embryonic stem (ES) cells. GS1-R, the latest addition to the Company's SC Proven(R) line of specialty cell culture products, is expected to have significant utility in the creation of genetically engineered rat models of human disease for use in academic, medical and pharmaceutical research. So, If you're a rat get right in line If you are a human, call your broker pH
Re: [TMIC] Re: [Transverse Myelitis Support] flying with wheelchair
Hey there, I do the same with my Segway. I drive it through security- usually they ask me to sit on a chair ( while one of the agents tries the segway out)- then to the boarding area where I take the segway apart and they put underneath with the wheelcairs and baby buggies. At the other end, I'm usually the last out so have plenty of time to put it together (1 minute) then speed off passing most of the passengers. Many airport security agencies use segways, especially in the big airports, so know all about them. They try it out, because if it works there is almost no place to put a bomb, other than in the vertical shaft, but that has been checked only two or three times! F
Re: [TMIC] Fw: Forget all other emails but this one!!!! MOST EFFECTIVE
8 YEARS FOR REPRESENTATIVES two terms that’s all. Representative's terms are only TWO years F
Re: [TMIC] Medical Marijuana
Janice, et al, SATIVEX is not covered by insurance. I deduct the expense for IRS. I also keep track of all expenses to Baltimore (Dr. Kerr), Montreal (Dr. Ware), and deduct all those expenses. I also keep track of all medication that is not covered by insurance. F
Re: [TMIC] Medical Marijuana
Marinol made me hungry too, helped a little with the pain. SATIVEX doesn't make me hungry! F
Re: [TMIC] Medical Marijuana
Robert, I use SATIVEX: An extraction from Cannibis, made in Britain, sold only in CANADA, but coming soon to the USA. ThisSATIVEX is a spray under the tongue. It lasts about eight hours, has very little euphoria. It costs about $640 Canadian for about 3 months spply (204 doses) I love it because I am able to travel with no problems at customs or with police as SATIVEX is a prescription medication. Frank
Re: [TMIC] Linda's recurrent TM
Frank explained some time ago that one ocurrence is TM, the second one indicates MS. Perhaps I misunderstood. Yes, That is exactly correct F
Re: [TMIC] Th Best is Yet To Come OT
EXCUUSE M This topic is OFF Topic- requiring OT be inserted in the subject line. And proclaiming, Th Best is Yet To Come. may not be totally appropriate. Many people are expecting the earth and most animals will be destroyed on or about 12/21/2012 The birth day of my two sons, and the day that my embryo was conceived. So, Anyway, we used to have an OT Officer. but I think that person either died or moved away. I'm not feeling any of my symptoms fading away. I actually feel that the Worst is yet to come, and we all better get used to it !! Sorry, I think the darkness, hormones (PMS), and the holidays just turn me into a dark dark person. So watch that religious stuff without OT. F
Re: [TMIC] nerve pain
Merry Christmas, I've been up north helping Santa, just got home last night!! And what do you know? Santa brought me a 102 mm f/7 ED Apo OTA Telescope and a portable tripod. But that's not why I'm writing... I'm writing to let you know that Vitamon D has been shown to decrease central neurotropic Pain. Take 1000 to 2000 units or mg I can't remember. The bottle label will tell you. Santa didn't bring me any vitamin D, but did bring me a box of Chocolates ( Truffles) and a box of 30 Harry and David pears. I'm back in town till after new years Yippy F
Re: [TMIC] Age
I was 55 yo f
Re: [TMIC]
I am here in Montreal watching humanity stroll and drive by. My apartment looks on to Boulevard de Maisonnueve West, between Concordia University and Dawson College. Masses of college students are always strolling by, iPod buds plugged in their ears. What is weird is the couple holding hands but each person is listening to their own iPod. Take Care F
Re: [TMIC] Topamax
Greetings, Myeline grows back but in an unorganized manner so the nerves do not function properly. Myelitis refers to INFLAMMATION- as in ITIS. The MRI showed no abnormal signal meaning no inflammation. Think of a nicely folded pile of laundry in the hall, a 5 years old comes a long and pulls the pile over, makes tents out of the sheets then leaves. Photo of hall shows no boy (Inflammation) but does show everything messed up. Hope that helps F
Re: [TMIC] chiropractor
I took a course at Harvard on Back Pain. One of the professors was a fellow who was a chiropractor and also an M.D., orthopedic surgeon. He was very good. Low Impact Adjustments are OK, High Impact Adjustments are very dangerous. Deep Massage helps a lot. Diathermy is very helpful to relax the deep tissues. Physiotherapy is crucial. Have I left out anything? F
Re: [TMIC] pain
Sometimes I feel Jayme doesn't understand how hard this is on me . Physically and emotionally I am so tired and worn out. I never get a break and it is so hard. Jaime may not understand because he is having to deal with being caught with TM. Share your feelings and thoughts with Jaimie, and ask him to share with you. Dr. Kerr told Jayme that there is no reason why he shouldn't walk again with lots of aqua and standing. This was very positive for us but the policy here in SK, Canada is until you wiggle that toe there is no need for aquatherepy. That is one of the big differences between the US and Canada. I know. I live in both countries. If you have the right insurance or lots of $$$ you can get the Physiotherapy to get that toe wiggling, but Canada has sociallized medical care I have hurt my back from trying to move Jayme's legs and helping him. I am just not strong enough. I cry so much right now because i am so burnt out. You need to take care of yourself. Do you have anyone who could give you respite from your so many duties? Maybe asking at the hospital's social service department. Someone to come in several times a week for an hour or two?? I shouldn't be complaining but sometimes I just need reassurance. I think if my hubby appreciated me more it would make the job easier. Even the nurses and social worker have seen that Jayme doesn't realize that it is not just about him. Jaime probably doesn't realize. He is caught in this very bad nightmare. He is scared out of his mind- what if he stays in his present condition for ever Imagine how he feels Sometimes I just feel very alone. You're not alone. We're here. Take care of your self Frank
Re: [TMIC] pain
Teresa, You have Central Pain. Many of us with TM or MS have the pain you have. I have it from my shoulders down, LeftRight. You need to get another MD. The person telling you that the pain should have gone away is totally wrong!! Get a referral to a University/medical school/pain clinic!! Your condition weill not be helped by regional nerve block. You need meds- Tricyclic Antyidepressant like Nortriptyline, Antiepilepsy med and perhaps some other pain med. I use Marinol. Good Luck- don't let that MD touch you!! Frank
