Re: [TMIC] Re: Attention -The TMIC List
I am here, yes. Janet From: Janice Nichols [mailto:jan...@centurytel.net] Sent: Thursday, May 2, 2013 3:47 PM To: heyjude48...@aol.com; tmic-list@eskimo.com Subject: Re: [TMIC] Re: Attention -The TMIC List Sorry I am late to respond. Maybe we could ask all who read/respond to our website to let us know by just stating a “yes” or “no” to whether or not they are still a part of us. We do need to have some idea who is still getting our emails. Would you all please do so? Janice From: heyjude48...@aol.com Sent: Tuesday, April 30, 2013 8:38 PM To: tmic-list@eskimo.com Subject: [TMIC] Re: Attention -The TMIC List Hi Everyone, How are you doing tonight? It's Jude Hoops and I am writing to let you know that eskimo.com may be having a problem with our emails. It seems that some of the people who don't want to receive mail are telling AOL that our mail is Spam instead of just unsubscribing to the list. It is because of their negligence that we may not get any more emails. This list has been around for at least 12 years and I don't know how long before I signed on that it had been up and running. I know the Quad list is going to another site, but I haven't heard anything about us. Does anyone else know anything about this? If you do will you please let me know. I'm very worried about it. I know that the list doesn't function the way that it used to but it is still important to me that we all stay in touch. Oh, do any of you have the list of May Birthdays? It usually comes around before the 1st and I haven't seen it yet for this month. What do you think we should do? (Again, I don't know if it applies to us too, or just the Quad list) And one other thing, do any of you mind if I use Pam's sign off of TIAD? I just can't seem to help myself, it just keeps her alive in my heart. TIAD, Jude Hoops Michigan attachment: j_dunn.vcf
[TMIC] Transverse Myelitis Story
I woke up one morning in late August 2004 and my right leg was tingling and numb, like I had a muscle knot. I went to the chiropractor, the massage therapist, and the rolfer - and none of them could change the feeling. The numbness increased, as did the banding (now I know what that is!) and the pain in my legs. In mid-September I went to my doctor and mentioned it to him - he said I was overreacting when I mentioned the possibility of MS. Ok, whatever. In October I realized that I had no feeling on the right side of my body - so the doc finally sent me for an MRI. The results came back that I had MS. Huge panic for the doc - put me in the hospital and gave me prednisone. That didn't help. I was sent to the MS clinic in Vancouver (800 miles away) - they told me to go home and rest. Symptoms continued to worsen, and finally in 2006 I had a spinal tap - and the diagnosis of TM. Here I am almost nine years later - managing the pain, and the numbness and the burning, and the . . . and the . . . - I know that you can fill in the blanks. I am working full time - at great expense to my body and my fatigue - but I have no choice as I am a walking wounded. On bad days I use a cane, on worse days I stay in bed, and on good days I am so grateful. The lesion is at T4-5 Of course the diagnosis is idiopathic TM - but interestingly enough about a month earlier I fell out of the back of a pickup truck (after using an outhouse in the back of the truck while partying with the seniors - be careful when partying with seniors!) and broke my wrist. To this day I believe the blunt force trauma of hitting the ground that hard - the stairs collapsed - contributed or caused the TM. I have had no further attacks, but I do have some excruciating days. Janet BC Canada attachment: j_dunn.vcf
Re: [TMIC] age/state
42 BC Canada Janet attachment: j_dunn.vcf
Re: [TMIC] Re: Lyrica, Psychiatric Evaluations
Title: AOL Email II was on Lyrica for many years - and it works great. I cold turkey quit taking it in November. Since then I have been getting by on Oxycontin, or Oxycodone, sometimes both. However - when the burning pain and the numbness and whatnot gets too great, I will still take a dose or two of the Lyrica as it really does help. I may eventually go back on it full time - depending on how the next few months pan out. I prefer the Lyrica over gabapentin because I can take less of it with greater results. Oxy is getting very difficult if not impossible to get in my town. Janet On 15/02/2013 8:20 PM, heyjude48...@aol.com wrote: Hello Everyone, As you know I am having the Medtronic pain pump put in. I went for my first consultation yesterday. Before they put in the pump I have to have a psychiatric consultation to see if I'm going to be a good candidate. I'm sure it's been a long time, but has anyone had a psychiatric consultation before. I need to know what to expect. I don't know why but I'm kind of nervous about it. I have my heart set on having this surgery because if I don't then I will have to have my leg amputated. There are no other Dr.s who want to continue with oral medication. I also have to go on Lyrica instead of Oxycodone. Has anyone taken Lyrica for pain, not depression? I appreciate your answers and look forward to reading them, Thanks, I love you, Jude, Michigan attachment: j_dunn.vcf
[TMIC] What's Been Stolen . . .
I haven't actually thought about the answer to this question - because like many of you - it has the potential to make me angry, depressed, frustrated, and the list goes on. I am one of the walking wounded - I can and do work, some weeks 38 hours and others 20 - depends on fatigue, pain - you know the factors. What I enjoy reading and learning from all of you is that I am not alone. That the cold feet, hot feet, burning feet, banding, the inability to concentrate, or have a drink, the sexual issues, the bladder and bowel issues, the fatigue, the pain, the never knowing whether I need a sweater or a fan, all of those things and more - I am not alone. Even though I am a walking wounded, I am not alone. And for that I so appreciate all of you. I appreciate that no topic is off limits, whether it is about intercourse or digital elimination, or just a plain bad day, or hallelujah even a good day - I am not alone. Even when I think I am, I am not - and thank you all so much for that. Yesterday where I live it was +1 celcius, today it is -20 celcius with a fierce wind chill making it feel like -29 celcius. That 30 degree temperature change plays havoc on my legs - and that is an understatement. Today is a lay low and stay warm day - trust me! Janet attachment: j_dunn.vcf
[TMIC] Stress
Jude - I am truly sorry to learn about Dave. Your question was on stress and TM and how it affects one. I have found that any, repeat, any amount of stress sends me up and over the edge, around the bend, bonkers, psycho, or whatever you wish to call it. In November I deliberately stopped all meds cold turkey (yes, I know, bad idea) - after about a week I knew I would live. I have the same pain level now as I did when I was taking effexor, welbutrin, quetiapine, lyrica, oxycontin, and flexeril. At this point I am only taking oxy at night to cope with the pain so I can sleep - except tonight it isn't working so I added some Lyrica. Yesterday and today were stressful days for me, plus my roommate is giving me grey hair. lol. So for me - a little stress is as detrimental as a lot. May you and yours find your way through this dark night of the soul, and I love what Dalton said to you: "Is there any Remover of Difficulties save God? Say: Praised be God! He is God! All are His servants and all abide by His bidding." May the God you worship remove your difficulties. Janet attachment: j_dunn.vcf
Re: [TMIC] Stress
Um, Jude . . . May the God you worship lighten your load, that you may still carry on, without being broken. For with His help - we can all manage. On 22/01/2013 11:19 PM, Janet Dunn wrote: Jude - I am truly sorry to learn about Dave. Your question was on stress and TM and how it affects one. I have found that any, repeat, any amount of stress sends me up and over the edge, around the bend, bonkers, psycho, or whatever you wish to call it. In November I deliberately stopped all meds cold turkey (yes, I know, bad idea) - after about a week I knew I would live. I have the same pain level now as I did when I was taking effexor, welbutrin, quetiapine, lyrica, oxycontin, and flexeril. At this point I am only taking oxy at night to cope with the pain so I can sleep - except tonight it isn't working so I added some Lyrica. Yesterday and today were stressful days for me, plus my roommate is giving me grey hair. lol. So for me - a little stress is as detrimental as a lot. May you and yours find your way through this dark night of the soul, and I love what Dalton said to you: "Is there any Remover of Difficulties save God? Say: Praised be God! He is God! All are His servants and all abide by His bidding." May the God you worship remove your difficulties. Janet attachment: j_dunn.vcf
Re: [TMIC] neurologist
The last neuro that I went to told me that when you are not living a good life, then God will afflict you. When you straighten up your life and live the way you are supposed to, a way that is pleasing to God, then He will stop the affliction. He told me to go home and be grateful that my affliction has not caused more damage, and that God has allowed me to get to where I am. geesh, thanks buddy. Janet On 17/01/2013 9:50 PM, Janice Nichols wrote: I have not been to my neuro in at least 4 years. My family doctor and Pain Management doctors take care of me far better than my neuro. Once I was out of the hospital for a year or two we quit going to him because he just did not do anything except ask how I was doing and then that was it. Pain Management doc’s do so much more! Janice From: heyjude48...@aol.com Sent: Thursday, January 17, 2013 5:38 PM To: el...@att.net Cc: tmic-list@eskimo.com Subject: Re: [TMIC] neurologist attachment: j_dunn.vcf
Re: [TMIC] Face book
I love this list, and although I am a FB person, I agree with Dalton - who cares about Lisa's Comment on Fred's Comment on Alice updating her profile pic. I prefer the community on this list. Thanks for hanging in, hanging around, and hanging on! Janet On 15/01/2013 6:32 PM, Pat Cooley wrote: Dalton I am on FB, but I really missed this site and so many of the people. Also I get tired of all the pet pictures, etc. I am glad to see more of these e-mails. Patti in Wisconsin On Tue, Jan 15, 2013 at 2:29 PM, Dalton Garis malugss...@gmail.com wrote: I prefer this to Facebook; Because this is ourselves sharing what is important to us, rather than things like, "Lisa commented on Fred's comment on Alice updating her profile picture of her 8-year-old tabby." I like the feeling here that we are a tight community of persons with a lot of affection, respect and support for one another. DG Sen attachment: j_dunn.vcf
Re: [TMIC] My book
I agree with James - Susan you have a beautiful book there, and I am glad I asked for one. Thank you. Janet On 21/08/2012 11:50 PM, James Berg wrote: To those of you who did not take Susan up on her off, you made a great mistake. To Susan--thank you so much, I cry when I look at it because it is so joyful to know someone understands what the tm feelings are. I have shared it with my wife and we cried together. Most wonderful. On Fri, Jul 6, 2012 at 10:28 AM, James Berg molokai...@gmail.com wrote: I'm very interested. I saw Sandy's review. James Berg PO Box 650 Kapaa, Hawaii 96761 On Fri, Jul 6, 2012 at 4:35 AM, susan zieke zri...@charter.net wrote: Hi everyone, I wrote/drew a book about life with TM and would like to share it with you. It was reviewed by Sandy Siegel in the last Journal. I drew what I was feeling during the first 10 years of my illness and was then encouraged to put the drawings into book form. All I need is your mailing address and I will send you a copy. The name of the book is "An Artful _expression_ of Chronic Pain and Grief" , Thanks, Sue attachment: j_dunn.vcf
[TMIC] Cold Laser
Hello All Today I was speaking with a lady who has intense nerve pain from some kind of knee or leg injury. She said she was getting cold laser treatments and that the treatments really helped. She was thinking that perhaps they would work for the nerve pain that comes with TM. So, I was wondering if anyone has either heard of this treatment, or has had the treatment, or any other info on this cold laser for TM. Thanks Janet attachment: j_dunn.vcf
[TMIC] Looking for input.
Hello Everyone - not sure who is on here anymore. I have written in before, several times in fact, bemoaning the issues that I have with the cold cold winters that we get up here in northeastern BC. Now, it is the heat. My question is this: does excessive heat cause issues like the cold does? I have never noticed it before, but this year I quit taking Lyrica, and I cannot get the spasming in my leg to stop, no matter what I try. I am wondering if stopping the lyrica has contributed to the increase in pain, or if it is heat related? Thanks for your input. Janet attachment: j_dunn.vcf
Re: [TMIC] TM Question
Hello Carol My neurologist told me that I had an attack of transverse myelitis that damaged my spinal cord, and now I am dealing with the residual damage. In that case, it is like polio. I think that when we have flareups then we have "myelitis" which is an inflammation of the area of the cord that was damaged - but not another TM attack. On 05/03/2012 10:39 AM, Carol E wrote: I curious about the proper way to explain our affliction. Do we currently have TM or we had it when we first became ill? Is it like Polio? It came, crippled and you no longer have Polio, but you do have the destruction that it left behind. Thanks for your help in explaining this to me. Carol Worrying does not empty tomorrow of its troubles; It empties today of its strengths. attachment: j_dunn.vcf
[TMIC] River Pharmacy
Hello Hey Jim I want to know more about this Pharmacy. Share your knowledge, PLEASE. My pins and needles and burning and neuropathy has magnified 300 percent since I have this hemangioma growing from T4-T11. Makes me go totally INSANE with pain. Lyrica does help a bit, or else it is the rest of the combo. But if this pharmacy is much cheaper, that is great. Thanks Janet Gerry and Pati--you can control the cost by buying your meds a River Pharmacy--out of India--they are honest and the drug is quality Jim
RE: [TMIC] RE Pins and Needles
Hi I finally understand the increase in intenseness with the wrong material. Since this hemangioma – man oh man. I wear sweatpants to work, heavy flannel at home, and last night I put on a pair of light flannel. OMG – I just about hit the roof! Shoes – yes sirree. I am going to look at the Easy Spirit Travel line. Right now I am in clogs. Croc clogs. And mostly bare feet. And sometimes just to cool the burning, I stand barefoot on the floor at work. And it is January in Northern Canada. Ha. Janet From: Deb Monteleone [mailto:aiki...@optonline.net] Sent: January 2, 2012 5:08 PM To: 'Gillian Clark'; 'TM list' Subject: RE: [TMIC] RE Pins and Needles Hi, I loved your sentence on shoes. I have done the same thing, able to return a lot, thank god. It’s even worse with socks, I think I tried every kind of sock, finally gave up, haven’t worn socks for 3 years. Just recently I tried a pair of good silk socks, depending on the day I can handle them for an hour or so. The shoes I found best for me are the Easy Spirit Travel time line. I must have 12-15 pairs in different colors and materials (on top outside of shoe), at least it gives some variety. They are also slip-ons (clogs) so I can take them off as soon as I sit. I can only wear one kind of pants, all cotton knit, so of course I have many colors of same pants. I feel kind of funny wearing the same pants to work all the time. The winters are hell as these pants are not thick or warm. At least I have free rein when it comes to tops. So not all is bad, got to keep this positive attitude otherwise don’t know what would happen. I started taking Ampyra and it really has improved the speed of my walking. At first it killed me because it seemed to increase my needles, burning, etc. Since its purpose is to increase nerve conductivity it kind of made sense. It hurt too much so I cut the dose in half as my neurologist said he would like me to stick it out if I could. After a month or so, I went back to full dosage because my walking seemed to be improving. The pain slightly more than normal but that has reversed and I believe the pain is slightly less. My New Year’s resolution is to reduce baclofen/Neurontin from 4x a day to 3x a day. I am also trying to eat healthy. I feel better when I do. This video from a doctor who got TM really inspired me. I had already seen a nutritionist and started to lose some weight and this video is similar to what I’ve already started. It is amazing how this woman healed with mostly diet changes that effect mitochondria. Minding Your Mitochondria is the link below to this Doctors amazing journey with MS. http://youtu.be/KLjgBLwH3Wc Make it a great day, Deb Long Island, NY
RE: [TMIC] Homeopathic treatment for TM symptoms
Constitutional Homeopathy will work - but it has to be constitutional. If you can find a great constitutional homeopath then you are set. TM is way too serious of a disease to try to cure it with homeopathy on its own. For ex. The homeopathic preparation of St. Johns Wort - Hypericum - is for the nerve endings. That is great - that is what we need. However, if you inadvertently take the wrong strength or take the remedy too often then you can prove the remedy and make the symptoms worse. Then you need the antidote - and I don't know what that is - do you? A constitutional homeopath would. St John's Wort is used for depression. If you are NOT on any other anti depressants then you should be ok to take it. There is some controversy about the sun, sunburn, and photosensitivity with St. John's Wort in pill form. Good luck in your venture - the tissue salts are always a good idea. Arnica would have to be in a 6x or lower - maybe even 30x - because this is a constitutional situation, and not just a first aid (a fall, a bruise, etc.) situation. Janet -Original Message- From: ryota nishino [mailto:write2ry...@gmail.com] Sent: December 19, 2011 4:50 PM To: tmic-list@eskimo.com Subject: [TMIC] Homeopathic treatment for TM symptoms Hello, A few people suggested I look into homeopathic treatment for TM symptoms. In particular, I was suggested to take: tissue salts (Combination F, mag. phos.; kali. phos.; nat. mur.), arnica (to take as pills) and St John's Wart. Has anyone tried these? Anything to report on? Of course, I am aware that the efficacy of homeopathy is very controversial. Either way, we have the big pharma and the 'alternative' medicine guru who await our custom. My initial TM attack was October last year and diagnosis two months later. So that I am late for steroids, which may actually be a good thing after hearing so many horror stories about the steroids. Yours, Ryota Nishino
RE: [TMIC] New MRI results
Hi Patti I am going to speak with him about that today, and also I am going to go see a very good neurosurgeon about the same issue. I am glad to know that you know someone who has had that done, and it was successful. Thanks! Janet From: pjv1...@chartermi.net [mailto:pjv1...@chartermi.net] Sent: December 16, 2011 8:25 PM To: Janet Dunn Cc: 'Janice Nichols'; 'TMIC'; tmic-l...@eskimo.net Subject: RE: [TMIC] New MRI results Janet, Can the hemangioma be lazered or disolved in some way? we had a young lady in TMIC about eight years ago who was diagnosed with TM and had all of the symptoms. She was also diagnosed after about twelve months with a teeny-tiny tumor against her spine that didn't originally show on her mRI's. She went in for surgery and the last time I saw her in person I hardly recognized her because she was walking so well. Im sure you and your doctors have discussed options and again I'm being curious. Patti - Michigan On Fri, Dec 16, 2011 at 9:41 PM, Janet Dunn wrote:
RE: [TMIC] New MRI results
A hemangioma is: A.D.A.M. Medical Encyclopedia. Hemangioma Cavernous hemangioma; Strawberry nevus Last reviewed: October 10, 2010. A hemangioma is an abnormal buildup of blood vessels in the skin or internal organs. Causes, incidence, and risk factors About 30% of hemangiomas are present at birth. The rest appear in the first several months of life. The hemangioma may be: * In the top skin layers (capillary hemangioma http://www.ncbi.nlm.nih.gov/pubmedhealth/n/pmh_adam/A001440/ ) * Deeper in the skin (cavernous hemangioma) * A mixture of both Symptoms * A red to reddish-purple, raised sore (lesion) on the skin * A massive, raised tumor with blood vessels Most hemangiomas are on the face and neck. Signs and tests Hemangiomas are diagnosed by a physical examination. In the case of deep or mixed lesions, a CT http://www.ncbi.nlm.nih.gov/pubmedhealth/n/pmh_adam/A003330/ or MRI http://www.ncbi.nlm.nih.gov/pubmedhealth/n/pmh_adam/A003335/ scan may be performed. Occasionally, a hemangioma may occur with other rare conditions. Additional tests may be done for these syndromes. Treatment Superficial or strawberry hemangiomas often are not treated. When they are allowed to disappear on their own, the result is usually normal-appearing skin. In some cases, a laser may be used to remove the small vessels. Cavernous hemangiomas that involve the eyelid and block vision are generally treated with steroid injections or laser treatments. These quickly reduce the size of the lesions, allowing vision to develop normally. Large cavernous hemangiomas or mixed hemangiomas may be treated with oral steroids and injections of steroids directly into the hemangioma. Recently, lasers have been used to reduce the size of the hemangiomas. Lasers that emit yellow light damage the vessels in the hemangioma without damaging the skin over it. Some physicians use a combination of steroid injection and laser therapy http://www.ncbi.nlm.nih.gov/pubmedhealth/n/pmh_adam/A001913/ . Expectations (prognosis) Small, superficial hemangiomas often disappear on their own. About 50% go away by age 5, and 90% are gone by age 9. Complications * Bleeding (especially if the hemangioma is injured) * Problems with breathing and eating * Psychological problems, from skin appearance * Secondary infections http://www.ncbi.nlm.nih.gov/pubmedhealth/n/pmh_adam/A002300/ and sores * Visible changes in the skin * Vision problems (amblyopia http://www.ncbi.nlm.nih.gov/pubmedhealth/n/pmh_adam/A001014/ , strabismus http://www.ncbi.nlm.nih.gov/pubmedhealth/n/pmh_adam/A001004/ ) Calling your health care provider All birthmarks, including hemangiomas, should be evaluated by the health care provider during a routine examination. Hemangiomas of the eyelid may interfere with the development of normal vision and must be treated in the first few months of life. Hemangiomas that interfere with breathing, feeding, or other vital functions should also be treated early. Prevention There is no known way to prevent hemangiomas. References 1. Habif TP. Vascular tumors and malformations. In: Habif TP, ed. Clinical Dermatology. 5th ed. St. Louis, Mo: Mosby Elsevier; 2009:chap 23. Review Date: 10/10/2010. Reviewed by: Linda J. Vorvick, MD, Medical Director, MEDEX Northwest Division of Physician Assistant Studies, University of Washington, School of Medicine. Also reviewed by David Zieve, MD, MHA, Medical Director, A.D.A.M., Inc.
RE: [TMIC] New MRI results
HI Janice It is not really what I was talking about – but I am very careful about the shoes I wear – because tight shoes grieve my feet, loose shoes I trip in, so I mainly wear crocs and a slip on clog type. I used to have that sensitivity – and then it left. But now it is back with a vengeance – way worse than before and it feels like I am always stepping on a sizzling cord. The banding is back – and I am not happy about the hemangioma. Janet From: Janice Nichols [mailto:jan...@centurytel.net] Sent: December 15, 2011 4:28 PM To: Janet Dunn; 'TMIC'; tmic-l...@eskimo.net Subject: Re: [TMIC] New MRI results Janet, I have always had real sensitivity in my feet.If someone rubbed them, they would really spasm.I have had TM for 5 years now. What I am just recently noticing is that shoes that fit my foot – leather – have started to be a problem.My right foot, right side has always been a problem, spasms bad enough that it lifts my whole leg up. Weird feeling! I then have to go to a shoe I would consider slight loose.No problem with tennis shoes, but sure don’t want to wear them out to dinners, etc. I know I am more active now, but the shoes are beginning to be a real problem. Is this what you were talking about? Janice From: Janet Dunn mailto:j.d...@shaw.ca Sent: Wednesday, December 14, 2011 3:11 AM To: 'TMIC' mailto:tmic-list@eskimo.com ; tmic-l...@eskimo.net Subject: [TMIC] New MRI results Hello Everybody I have had TM and the various symptoms of since August of 2004. I have a lesion on my spine at T4-5. There are a few issues with that, put I have been managing. Take my meds, keep my stress down, rest, - you all know the routine. I was doing so well that this summer I actually began to wear “proper ladies shoes” - including a pair of boots with a 1.5 inch heel – a sturdy heel, but a heel none the less. I was weaning down on my meds – life was grand to say the least. Then in October my feet began to tingle when I dried them with a towel. I really didn’t think too much of it until that feeling moved up the legs. I went to visit my daughter in Victoria in the beginning of November, and found that the right leg (the troubled one) would give out quite easily, and I would tire out. I got back to my home town and went to see my Doc. He sent me for an MRI. And this is the news I want to share. It is rather a “good” news, “bad” news situation. The MRI showed that the lesion of the cord at T4-5 were somewhat technically different, and the cord is somewhat attenuated (squished) . Essentially the clinical changes, and the subtle increased signal at the t4 – 5 levels do not present any significant change, and not of clinical significance. However, the report continues, there is a hemangioma at t4 and t7. Basically a growth on the spinal cord. And that of course is pushing on the cord itself which in turn is causing all the extra pain, and the return of all the burning that I am experiencing, as well as the numbness that is creeping up my abdomen. Wonder when it will stop, and what kind of damage will it inflict before it does. Two months ago you would have had no idea that I had a chronic illness with bothersome side effects – today you do not see me very far away from a cane. The joys, the joys. Anyone ever heard of this and the outcome? Anyone going to see anybody at John Hopkins or at the Mayo? I am supposed to be seeing a neurologist again but that could take a year. So whether there is a clinical significance or not, there is definitely a physical significance, and I really don’t care for it! Thanks for “listening” - that is why I love this list, and the people on it. Janet Dunn Fort St John BC
[TMIC] New MRI results
Hello Everybody I have had TM and the various symptoms of since August of 2004. I have a lesion on my spine at T4-5. There are a few issues with that, put I have been managing. Take my meds, keep my stress down, rest, - you all know the routine. I was doing so well that this summer I actually began to wear proper ladies shoes - including a pair of boots with a 1.5 inch heel - a sturdy heel, but a heel none the less. I was weaning down on my meds - life was grand to say the least. Then in October my feet began to tingle when I dried them with a towel. I really didn't think too much of it until that feeling moved up the legs. I went to visit my daughter in Victoria in the beginning of November, and found that the right leg (the troubled one) would give out quite easily, and I would tire out. I got back to my home town and went to see my Doc. He sent me for an MRI. And this is the news I want to share. It is rather a good news, bad news situation. The MRI showed that the lesion of the cord at T4-5 were somewhat technically different, and the cord is somewhat attenuated (squished) . Essentially the clinical changes, and the subtle increased signal at the t4 - 5 levels do not present any significant change, and not of clinical significance. However, the report continues, there is a hemangioma at t4 and t7. Basically a growth on the spinal cord. And that of course is pushing on the cord itself which in turn is causing all the extra pain, and the return of all the burning that I am experiencing, as well as the numbness that is creeping up my abdomen. Wonder when it will stop, and what kind of damage will it inflict before it does. Two months ago you would have had no idea that I had a chronic illness with bothersome side effects - today you do not see me very far away from a cane. The joys, the joys. Anyone ever heard of this and the outcome? Anyone going to see anybody at John Hopkins or at the Mayo? I am supposed to be seeing a neurologist again but that could take a year. So whether there is a clinical significance or not, there is definitely a physical significance, and I really don't care for it! Thanks for listening - that is why I love this list, and the people on it. Janet Dunn Fort St John BC
RE: [TMIC] New MRI results
Hello Dalton Yes sir, the shoes have long been lost. And the stress and fatigue - are definitely kept to a minimum. I understand the part of there being little room for any swelling without causing immediate difficulties. That is the funny part - the doc's don't get that! Thanks for sharing. Janet From: Dalton Garis [mailto:malugss...@gmail.com] Sent: December 14, 2011 5:26 AM To: Janet Dunn; 'TMIC'; tmic-l...@eskimo.net Subject: Re: [TMIC] New MRI results I think there is something in common with my own situation; In 1970 I fell while working as a lineman and broke my back in several places. I had an operation to gain the use of my legs which were paralyzed on the left side and lower organs. Over the years I had four more operations to stabilize the back above the break. Finally, after five operations my back was fused from the lumbar to the thoracic just south of my shoulder blades. I couldn't do much and was like a crate of eggs in terms of stability and pain. Very brittle and stiff, in other words. Then I got T.M. Two years ago. My whole spinal cord lit up and would just burn for weeks. I lost the use of my left side again and had banding pain. My entire skin would just be on fire and my left leg was useless. Fatigue. Sleeping all the time. You know the drill. Then, I began to get seizures if under stress or exertion. It turned out that the T.M. Had caused anomalies in the Pons, a part of the brainstem, and I would get these seizures-I called them fits-whenever under stress. The doctors said that due to the spinal cord canal being so compromised, there was very little room for any swelling to occur without causing immediate difficulties. Furthermore, the blood supply to the spinal cord was not capable of meeting extra demands if the nervous system became active. So, I take it easy and try to keep stress out of my life (Sure! I live in New York City!). I think some of this applies to your situation. Lose the shoes for a while. They are stressing your spinal cord and back muscles. After a few weeks r months things might just return to the status quo ante. Dalton Dalton Garis 40-26 College Point Blvd. Tower 1, #17K Flushing, NY 11354 (718) 838-0437 From: Janet Dunn j.d...@shaw.ca Date: Wed, 14 Dec 2011 02:11:04 -0700 To: 'TMIC' tmic-list@eskimo.com, tmic-l...@eskimo.net Subject: [TMIC] New MRI results Resent-From: tmic-list@eskimo.com Resent-Date: Wed, 14 Dec 2011 01:14:00 -0800 Hello Everybody I have had TM and the various symptoms of since August of 2004. I have a lesion on my spine at T4-5. There are a few issues with that, put I have been managing. Take my meds, keep my stress down, rest, - you all know the routine. I was doing so well that this summer I actually began to wear proper ladies shoes - including a pair of boots with a 1.5 inch heel - a sturdy heel, but a heel none the less. I was weaning down on my meds - life was grand to say the least. Then in October my feet began to tingle when I dried them with a towel. I really didn't think too much of it until that feeling moved up the legs. I went to visit my daughter in Victoria in the beginning of November, and found that the right leg (the troubled one) would give out quite easily, and I would tire out. I got back to my home town and went to see my Doc. He sent me for an MRI. And this is the news I want to share. It is rather a good news, bad news situation. The MRI showed that the lesion of the cord at T4-5 were somewhat technically different, and the cord is somewhat attenuated (squished) . Essentially the clinical changes, and the subtle increased signal at the t4 - 5 levels do not present any significant change, and not of clinical significance. However, the report continues, there is a hemangioma at t4 and t7. Basically a growth on the spinal cord. And that of course is pushing on the cord itself which in turn is causing all the extra pain, and the return of all the burning that I am experiencing, as well as the numbness that is creeping up my abdomen. Wonder when it will stop, and what kind of damage will it inflict before it does. Two months ago you would have had no idea that I had a chronic illness with bothersome side effects - today you do not see me very far away from a cane. The joys, the joys. Anyone ever heard of this and the outcome? Anyone going to see anybody at John Hopkins or at the Mayo? I am supposed to be seeing a neurologist again but that could take a year. So whether there is a clinical significance or not, there is definitely a physical significance, and I really don't care for it! Thanks for listening - that is why I love this list, and the people on it. Janet Dunn Fort St John BC
RE: [TMIC] Fatigue Meds
I agree with Todd. The fatigue - it is awful. One day at a time. Today all I did was drive 2.5 hrs to a bigger city, and then turned around and attempted to drive home. Fell asleep with my eyes wide open, so I pulled into a Wal Mart parking lot, and slept. One day at a time. Stress = more sleep. Overtired = more sleep. More activity = more sleep. Work = more sleep. One day at a time, sweet Jesus, one day at a time. (That 's a line from a song - hope no one is offended!) Janet From: Todd Tarno [mailto:toddtm2...@sbcglobal.net] Sent: December 7, 2010 12:30 PM To: TMIC Subject: Fw: [TMIC] Fatigue Meds I had the worst fatigue in the begaining, I was sleeping 20 hours a day ( only got up to eat go to the bathroom) for the first 1 years. The next year was a little better, just sleeping 18 hours a day. The follow year sleeping 12 hours a day. The only thing I found to help was time, I know this is not what anyone want to hear. Who takes one day at a time, Todd in CC, TX --- On Tue, 12/7/10, Regina Rummel regina...@sbcglobal.net wrote: From: Regina Rummel regina...@sbcglobal.net Subject: [TMIC] Fatigue Meds To: tmic-list@eskimo.com Date: Tuesday, December 7, 2010, 10:04 AM I live exhausted every day from the moment I wake up to the moment I go to bed. I've tried all the meds my doctors suggested to no use. Came to the conclusion that it makes no sense to subject myself to side effects when pills are useless. Bottom line, we live with the residuals of TM's attack, and fatigue affects us big time. I just take Neurontin even though I doubt it does me any good. If I mention it to my neuro, I can guarantee that she will advise me to triple the dose or more. Your many comments prompted me to add mine. I've accepted fatigue as part of my many other symptoms, but only RELUCTANTLY. Take care. R
RE: [TMIC] Shingles Vaccine
Hi to all I am not a dr or a nurse. I am only operating on some common sense. 1.Vaccines are very useful in certain situations 2.Shingles are painful 3. Vaccines stimulate the immune system 4. TM is a result of many things, including the immune system going into overdrive and attacking the spinal cord (autoimmune disease) 5. Why would I want to do anything that would tempt fate and kick that immune system into overdrive and risk another attack, or another flare up 6. Homeopathic remedies work wonders on shingles (rhus tox) For those of you who remember my son and his issue - he is still in so much pain that most days he misses school, lays in bed, and generally is not having a good time of it. The diagnosis of it is organic and he will possibly grow out of it is not happening, and now, since he has not gone to a pain clinic, he cannot have any pain killers. Damn doctors. Damn system. Damn. Sorry, just had to let that out. Janet From: Carol E [mailto:snow121...@hotmail.com] Sent: November 12, 2010 8:40 AM To: lynnemye...@yahoo.com; tmic-list@eskimo.com Subject: RE: [TMIC] Shingles Vaccine I sure agee with that. Wished I had asked the neurologist when I went to Mayo Clinic in Sept. I made a list of things to ask, but I just didn't think of very thing. Carol Worrying does not empty tomorrow of its troubles; It empties today of its strengths. _ From: snow121...@hotmail.com To: lynnemye...@yahoo.com; tmic-list@eskimo.com Subject: RE: [TMIC] Shingles Vaccine Date: Fri, 12 Nov 2010 07:47:39 -0600 My Internal Medicine doc wants me to get every vaccine made. I really don't think she takes into consideration the affects that it might have on patients with TM. I will call my neurologist to get her recommendation and then make up my mind. Carol Worrying does not empty tomorrow of its troubles; It empties today of its strengths.
RE: [TMIC] OT - DAMIANA
Hi Candis I would be interested to know how that works for you. At the health food store where I work we have always sold it as an aphrodisiac . Which, I guess if it worked like that, it would take care of depression, blood sugar issues, and calm your nerves. Damiana has plant compounds similar to progesterone – which would give it the aphrodisiac component. Yes, please let me know if it works for you in the ways you mentioned. I am very curious now. Thanks Janet From: CANDIS KALLEY [mailto:cakal...@embarqmail.com] Sent: September 27, 2010 8:08 AM To: tmic-list Subject: [TMIC] OT - DAMIANA Has any one tried DAMIANA? it is suppose to: * reduce spasms * relieve depression * reduce blood sugar * calm nerves I've got some I'll let you know how it works. Life is short! Break the rules! Forgive quickly! Kiss slowly! Love truly, Laugh uncontrollably . And never regret anything that made you smile. Prayers and thoughts for you and yours, Candy K.
RE: Fw: Re: [TMIC] another wonderful night
My feet burn too, in fact, lately I cannot dry the bottoms of them with a towel as it causes a very uncomfortable feeling. I do know that since I have been taking 150mg of Lyrica 2x a day, the burning is not so bad. They are just cold all the time. Even when it is smokin hot outside, the feet, they stay cold! Janet From: Akua [mailto:a...@artfarm.com] Sent: September 16, 2010 5:45 PM To: tmic-list@eskimo.com Subject: Re: Fw: Re: [TMIC] another wonderful night . I do feel both of my feet feel like there should be flames coming off my feet. lol Hope this helps, Todd in CC, TX my feet BURN too! Akua in the southenr finger lakes, NY --
RE: [TMIC] Unidentified subject!
Yes, I used to feel that way, I really did. However, I took about 3 years of Rolfing and or Massage Therapy treatments - and some of them were very painful. That really helped my legs feel and work better. In fact, I attribute my current ability to walk very well most days to all of the treatments I took. It did cost a bundle, and it did hurt a ton. However, now I don't have that feeling, I can walk quite well, and my right side seems to feel better. Although it has been 6 months since my last massage, and I can feel the thing in my body starting to reach it's tendrils out again and begin to strangle my leg and torso. Time to get going again on the massage thing. We have lost our best rolfer in town, and I am hesitant to try to find another - simply because the treatment is very intense and personal. Try massage, or as has been suggested already - stretching exercises; if you don't use it, somehow, you will lose it. Janet -Original Message- From: jack...@att.blackberry.net [mailto:jack...@att.blackberry.net] Sent: September 10, 2010 7:57 AM To: TMIC Subject: [TMIC] Unidentified subject! My right leg seemed to suffer more then left. I was wondering... I got tm in 07. Over last months intense pain and can't sleep on right side my right leg seems to be getting shorter. Has this happened to anyone ? Is this from TM ? Sent via BlackBerry by ATT
[TMIC] Medications
Hello to all I find it very interesting the number of us that are on or have taken hydrocodone, especially when it is said that opoids do not help with the pain of TM For me personally, I wouldn't make it if I didn't have a member or two of the hydrocodone family in my drug repertoire. I take 20mg or 40mg of long acting HCL in the morning, depending on the legs, and have perocdan as a filler for the day. I also take Lyrica, Effexor, Wellbutrin and baclofen. Even today, after 2 days of working 8 hours, and moving around and doing housework, I hurt. I want to lay in bed. But . . . just like the rest of us . . . duty and life are calling. I really appreciate the medication information simply because I live so far away from the nearest neurologist, and the wait time is up to a year, if we can get in at all. Then we must travel either 400 miles out of province, or 850 miles to Vancouver. So the information on here is absolutely priceless. However, you cannot have my MasterCard! ;) Janet From: john snodgrass [mailto:] Sent: September 8, 2010 2:09 PM To: Rev. Craig Crossman Cc: transverse myelitis Subject: Re: [TMIC] Neurologist visit I have been taking gabapentin 400mg for the last 2 years 3 times a day. some people say that they can take 1 and it knocks them out. i have never experienced that. perhaps because of the extreem pain. I also take hydrocodone,baclofen, and lorazepam. _
[TMIC] Mag Phos
Hello to all; I have listened in on the whole conversation about Mag Phos, as we call it in the alternative medicine world. There are several different strengths of Mag Phos, and then there is the tissue salt. Dalton: what strength were you taking? If you were taking 6x, then that is a good thing - there are very rarely any side effects from that, as it is a tissue salt, one of the twelve essential minerals that our cells need. Then there is the homeopathic version: it can come in anything from 1M, 30c, 30x, 6D, etc etc. Both the tissue salt and the homeopathic Mag Phos do similar things, but with a homeopathic remedy, you can prove the remedy. You can take too much of it, and then aggravate the very symptoms that you were trying to get rid of. The symptoms can become much worse, then you need the corresponding antidote homeopathic remedy, or time, to ease up the symptoms. I am not sure what strength you were taking, or how much of it you took. But that is a possibility that you proved the remedy. Or it could just be as someone else said (maybe Barbara or Janice?) (talk about memory, and the email is long gone) : perhaps, feeling good, you over did it and caused a fatigue - I need a rest day. Just my two cents, Janet
RE: [TMIC] Mag Phos
Hi Dalton Do you know what strength you took? I take regular magnesium, in very high dosages, to help with the tightening and aching of the legs. One time I did prove a homeopathic remedy for nerves, not mag phos, and wow, did I learn my lesson. I have worked and studied in the alternative medicine field for 12 years, and am not comfortable with homeopathics except as an acute first aid. Magnesium in itself is a very good thing. How are you doing now? I just threw my two cents in as the field of homeopathics is not often understood. The person who gave you the mag phos did the right thing in the situation. The dosage is what I am curious about - 30C 6x etc. Thank you for sharing your experience with us. It does help me in my professional life. Janet From: Dalton Garis [mailto:malugss...@gmail.com] Sent: September 3, 2010 4:06 AM To: Janet Dunn; tmic-list@eskimo.com Subject: Re: [TMIC] Mag Phos Janet; I haven't taken any of the mag. phos. since 15 August. I first took it on the 10th I think, while in the throes of a bad series of convulsions. They abruptly stopped. So took it on and off for a few days after the first time, and when I felt a seizure coming on. On the 15th I took some but a tiny convulsion came over me anyway, I decided they actually didn't work. That was the last seizure-convulsion I have had. Since that stuff was the only thing different, and since I had been so sick with the convulsions that I was adjusting to the idea that my worklife was over-so, I thought I should mention what happened to the TM group. I don't understand the dosages or the units involved. But, as I said at first, I do not promote it, understand it, or represent it in any way. I just thought I should mention what happened and suggest others try this otherwise harmless thing to see if there were any positive results. Dalton _ From: Janet Dunn j.d...@shaw.ca Date: Thu, 2 Sep 2010 23:34:21 -0700 To: tmic-list@eskimo.com Subject: [TMIC] Mag Phos Resent-From: tmic-list@eskimo.com Resent-Date: Thu, 2 Sep 2010 23:34:22 -0700 Hello to all; I have listened in on the whole conversation about Mag Phos, as we call it in the alternative medicine world. There are several different strengths of Mag Phos, and then there is the tissue salt. Dalton: what strength were you taking? If you were taking 6x, then that is a good thing - there are very rarely any side effects from that, as it is a tissue salt, one of the twelve essential minerals that our cells need. Then there is the homeopathic version: it can come in anything from 1M, 30c, 30x, 6D, etc etc. Both the tissue salt and the homeopathic Mag Phos do similar things, but with a homeopathic remedy, you can prove the remedy. You can take too much of it, and then aggravate the very symptoms that you were trying to get rid of. The symptoms can become much worse, then you need the corresponding antidote homeopathic remedy, or time, to ease up the symptoms. I am not sure what strength you were taking, or how much of it you took. But that is a possibility that you proved the remedy. Or it could just be as someone else said (maybe Barbara or Janice?) (talk about memory, and the email is long gone) : perhaps, feeling good, you over did it and caused a fatigue - I need a rest day. Just my two cents, Janet
Re: RE: [TMIC] Mag Phos
Hi Regina 6x is the tissue salt - if you choose to do that, follow the directions on the bottle - which should say 4 pellets, 4 times a day, under the tongue. However, if you dissolve them in a little hot water and sip it, the effect is faster. Works great for leg cramps, menstrual cramps etc. as well. I take regular magnesium. Magnesium Citrate - 450 mg at a shot, 3 times a day - and I also take a different Magnesium for my heart. Magnesium is an extremely important mineral for over 300 bodily functions. Thanks for the compliment. Janet
RE: [TMIC] Iron Deficiency
Yes, I have chronic low hemoglobin counts - I was told that a chronic illness like this will lead to anemia. That and the monthly period does me in. I have to supplement with iron just to keep my hemoglobin in the low normal range. It usually runs at 117 with gusts to 124. I can tell when my iron is low, as I get absolutely fatigued just by thinking. Janet From: Carol E [mailto:snow121...@hotmail.com] Sent: September 1, 2010 7:54 PM To: tmic-list@eskimo.com Subject: [TMIC] Iron Defensiency Does anyone have iron deficiency as a result of the TM or the meds they are taking? Carol in Addison, IL
RE: [TMIC] arghhh!!!!!!!
Hey John, Randy, I've been there too. Besides Percodan and Baclofen, I also use a good healthy dose of Magnesium Citrate. About 400 - 500 mgs - it is a natural muscle relaxant. And it helps with the sleep issue. Gotta love TM. Gotta. NOT! Janet From: randy rankin [mailto:rj_ran...@yahoo.com] Sent: August 10, 2010 9:48 PM To: john snodgrass; transverse myelitis Subject: Re: [TMIC] arghhh!!! Hey John, been there - understand what you're going through. I'm not sure what will work for you. mix of meds and p.t. (eventhough my first neuro said p.t. wouldn't do any good) made a big difference but it took several years of constant determination. _ From: john snodgrass jcs...@yahoo.com To: transverse myelitis tmic-list@eskimo.com Sent: Tue, August 10, 2010 11:13:59 PM Subject: [TMIC] arghhh!!! bed at 8 up at 10 spasm city! more pain meds. now just burning legs. gotta be up at 4. slept 2.5 hours last night. whats this? getting sleepy. good.
RE: [TMIC] Heat
I know the heat is tough on us with TM, what weather isnt? But . . . I much prefer the heat to the cold. Of course where I live it doesnt get that hot, only around 29 Celcius, and I am sorry to my American friends but I am not sure how much that is in Farenheit. Perhaps around 85? Heather from Calgary will know, because Heather, you are wise. Janet From: bobby jim [mailto:elbobber...@earthlink.net] Sent: August 2, 2010 7:05 PM To: Rev. Craig Crossman; tmic-list@eskimo.com Subject: Re: [TMIC] Heat Well, here in Elvisland, my back yard (in the shade) hit 99.7º a bit after 12 noon. At 8:30 PM it was down to 91.0º.. Wow. BobbyJim, running around the house in his 'underwear';);) From: Rev. Craig Crossman mailto:revcross...@gmail.com To: tmic-list@eskimo.com Sent: Monday, August 02, 2010 19:35 Subject: [TMIC] Heat OK I am getting close to surrender. I drove to Wichita, KS today (5.5 hours from Colby) for a conference. At 9AM it was 94 degrees; upon arrival in Wichita it was 108 degrees! Id wave a white flag but Im busy using it to fan myself. Rev. Craig Crossman First Baptist Church 615 W. Webster St. Colby, KS 67701 W - (785)462-2867/ Cell - (785)443-5154 revcross...@gmail.com www.firstbaptistcolby.org
RE: [TMIC] pause from the cause
I too have a very caring boss. And I am in the same position: Worse days - bed - maybe not in fetal position, but curled up somewhat. Bad days - off to work, hoping I don't make a huge mistake that buggers the whole company. I have noticed though, that my ability to drive long distances ( more than one hour ) is becoming potentially deadly. Twice on a trip to a city 2.5 hours away I woke up across the center line, with oncoming traffic. Boy did I thank my God. Now I only drive around town, and maybe within a 50 mile radius. So my hat is off to you, John, for being able to drive that rig, on meds. The whole thing of ability and strength, numbness yet pain, walking but using up energy to force that leg to take a step - it just doesn't make any sense. Janet From: john snodgrass [mailto:jcs...@yahoo.com] Sent: August 2, 2010 1:59 PM To: transverse myelitis Subject: RE: [TMIC] pause from the cause i tell people that i have my bad days and my worse days. worse days are usually in a fetal position. bad days ,I'm driving a tractor and hoping to God I don't hurt anyone. it doesn't look very promising when your stumbling around to get to the truck, my boss has been very caring. I can't afford to be on disability but someday I may not have that choice. It just doesn't make sense to have strength yet with all this disabling pain. The meds allow me to function but they don't take away the pain. glad I have a place to vent where others know exactly what your talking about. --- On Mon, 8/2/10, Robert Pall rp...@neillsupply.com wrote: From: Robert Pall rp...@neillsupply.com Subject: RE: [TMIC] pause from the cause To: john snodgrass jcs...@yahoo.com, transverse myelitis tmic-list@eskimo.com Date: Monday, August 2, 2010, 4:49 PM Next month it will be 13 years for meand for every minute of every day while I am awake I am conscious of my discomforts...you just sort of become familiarr with it and really notice it most when there is even a slight change better or worse. Rob in New Jersey _ From: john snodgrass [mailto:jcs...@yahoo.com] Sent: Monday, August 02, 2010 4:45 PM To: transverse myelitis Subject: [TMIC] pause from the cause Does anyone ever have moments that they don't feel anything? Moments of no pain but then you move and shazam! there it is again?
RE: [TMIC] Fw: Clorox vs Peroxide.....this is good
One of the very important things to take note of is that often - for disinfecting purposes - it is not the 3 percent off the shelf H202 that is being used. It is the 35 percent food grade that is used for hot tubs, cutting boards etc. You dilute it down, but not to 3%. 35% burns burns burns! However, for mouth rinses, yes use 3%. We - at the health food store where I work - actually had to quit selling it to one woman because she would bathe in the 35% so much that her skin was turning white. (She was from Columbia) She was also drinking a very diluted amount. Moderation, Education, and above all Common Sense! Janet From: lynne myers [mailto:lynnemye...@yahoo.com] Sent: July 28, 2010 6:40 AM To: tmic Subject: Re: [TMIC] Fw: Clorox vs Peroxide.this is good Found most of the uses interesting, but as a nurse I have to tell you I would no sooner use peroxide on a wound than bleach. Peroxide can cause damage to surrounding healthy tissues and actually slow healing. For me good old soap and water work the best. --- On Tue, 7/27/10, Janice Nichols jan...@centurytel.net wrote: From: Janice Nichols jan...@centurytel.net Subject: [TMIC] Fw: Clorox vs Peroxide.this is good To: tmic-list@eskimo.com Date: Tuesday, July 27, 2010, 12:02 PM I found this very interesting - hope you do too. Janice - Original Message - Clorox vs Peroxide VERY interesting and inexpensive. This was written by Becky Ransey of Indiana (a doctor's Wife), and I want to share it with you. She was over recently for coffee and smelled the bleach I was using to clean my toilet and counter tops. This is what she told me. 'I would like to tell you of the benefits of that Plain little ole bottle of 3% peroxide you can get for under $1.00 at any drug store. What does bleach cost? My husband has been in the medical field for over 36 years, And most doctors don't tell you about peroxide. Have you Ever smelled bleach in a doctor's office? NO!!! Why? Because it smells, and it is not healthy! Ask the nurses who work in the doctor's offices, and ask them if they use bleach at home. They are wiser and know better! Did you also know bleach was invented in the late 40's? It's chlorine, folks! And it was used to kill our Troops. Peroxide was invented during WWI in the 20's. It was used to save and help cleanse the needs of our troops and hospitals. Please think about this: 1. Take one capful (the little white cap that comes with the bottle) and hold in your mouth for 10 minutes daily, then spit it out. (I do it when I bathe.) No more canker sores, and your teeth will be whiter without expensive pastes. Use it instead of mouthwash. 2. Let your toothbrushes soak in a cup of peroxide to keep them free of germs. 3. Clean your counters and table tops with peroxide to kill germs and leave a fresh smell. Simply put a little on your dishrag when you wipe, or spray it on the counters. 4. After rinsing off your wooden cutting board, pour peroxide on it to kill salmonella and other bacteria. 5. I had fungus on my feet for years until I sprayed a 50/50 mixture of peroxide and water on them (especially the toes) every night and let dry. 6. Soak any infections or cuts in 3% peroxide for five to ten minutes several times a day. My husband has seen gangrene that would not heal with any medicine but was healed by soaking in peroxide. 7. Fill a spray bottle with a 50/50 mixture of peroxide and Water and keep it in every bathroom to disinfect without Harming your septic system like bleach or most other Disinfectants will. 8. Tilt your head back and spray into nostrils with your 50/50 mixture whenever you have a cold, plugged sinus. It will bubble and help to kill the bacteria. Hold for a few minutes, and then blow your nose into a tissue. 9. If you have a terrible toothache and cannot get to a dentist right away, put a capful of 3% peroxide into your mouth and hold it for ten minutes several times a day. The pain will lessen greatly. 10. And of course, if you like a natural look to your hair, spray the 50/50 solution on your wet hair after a shower and comb it through. You will not have the peroxide-burnt blonde hair like the hair dye packages but more natural highlights if your hair is a light brown, reddish, or dirty blonde. It also lightens gradually, so it's not a drastic change. 11. Put half a bottle of peroxide in your bath to help get rid of boils, fungus, or other skin infections. 12. You can also add a cup of peroxide instead of bleach to a load of whites in your laundry to whiten them. If there is blood on clothing, pour it directly on the soiled spot. Let it sit for a minute, then rub it and rinse with cold water. Repeat if necessary. 13. I use peroxide to clean my mirrors. There is no smearing, which is why I love it so much for this. 14. Another place it's great is in the bathroom, if someone has been careless has wet on the floor around the
RE: [TMIC] TM Info request
Welcome to our group, sorry you had to find us! Heat will affect some of us, won't affect others. Cold affects some, not others. TM should stand for Totally Miscellaneous because all symptoms vary, except for usually the banding and the pain. Janet Injured at T4 - T5 From: Rev. Craig Crossman [mailto:revcross...@gmail.com] Sent: July 25, 2010 10:26 AM To: tmic-list@eskimo.com Subject: [TMIC] TM Info request Hello, I was very glad to find this e-list. I am new to TM having been diagnosed one year ago. We moved from PA to Kansas in April. This has been a hot summer with 20+ days straight of temps in upper 90's to low 100's, and I find I am having a greater number of symptoms than normal. Does anyone know if TM patients are adversely affected by heat? My doctor is not very familiar with TM and I won't see a neurosurgeon until September. Thanks, and God bless. Rev. Craig Crossman First Baptist Church 615 W. Webster St. Colby, KS 67701 W - (785)462-2867/ Cell - (785)443-5154 revcross...@gmail.com www.firstbaptistcolby.org
RE: [TMIC]
Hello Rebecca. I am taking 10mg of Baclofen. Only on an as needed basis - when I feel my legs stiffen and want to cramp or jerk. So I sometimes take it 3 times a day ( I was told that was the max I could take ) and sometimes I take it once a day, and sometimes I don't take it. My son, Tyrel, whom you may remember as being diagnosed with TM and then not with TM, is taking 10mg twice a day, every day. Janet From: Rebecca [mailto:wrabal...@gt.rr.com] Sent: July 9, 2010 8:14 PM To: tmic-list@eskimo.com Subject: [TMIC] I have a question. How many mg. are you taking of bacolfen? I am not sure at what dosage would I benefit from. Thanks image001.jpg
RE: [TMIC] The Sweats
Hi Jan Thanks for that info. I have been in a far infra red sauna and I definitely can “sweat” below my injury. When in the sauna even the calves of my legs can sweat and I didn’t even know that was possible. That is an induced sweat. When my body overheats naturally, it is only from the injury up, now that I think about it. That is very interesting – I never thought to pay attention before, but that explains why the heat feels like it is only in the top half of my body – I know that at work I sit with heavy socks on, two pairs of woolen slippers and a blanket on my legs, but the window wide open for a breeze as I am hot hot hot from the injury up. Thanks for bringing that to my attention. Funny how sometimes we never stop to think about the whole picture! Janet From: Jan Hargrove [mailto:jmh1...@sbcglobal.net] Sent: June 18, 2010 8:01 AM To: Janet Dunn; tmic-l...@eskimo.net; Janice Nichols Subject: Re: [TMIC] The Sweats Janet, My neuro told me that my temp control would never come back, and that I would only sweat above where I was attacked, t8. And, he was correct!! That was the only thing he told wouldn't be repaired and after 14½ years I'm a believer!! I was warned not to stay out in heat for long periods as heat stroke is possible when your whole body can't sweator as a lady, perspire!! janh From: Janet Dunn j.d...@shaw.ca To: Janice Nichols jan...@centurytel.net; tmic-list@eskimo.com Sent: Fri, June 18, 2010 12:56:45 AM Subject: RE: [TMIC] The Sweats image001.gifimage002.gif
RE: [TMIC] The Sweats
Hi Janice About the sweats: I had them so bad that they would make me sick to my stomach, ready to pass out. I found that the heat could not go down, it could only go up - I mean from the waist up. I thought it was medication reactions, I thought maybe my kidneys were acting up. Then I realized that at 47 it could be hot flashes. I started taking Maca and low and behold, most of the problem has disappeared. However, whenever I get hot, or am too active, or in an uncomfortable situation, and sometimes for no reason at all, I will drip sweat - it runs down my back, my front, my face - yuck. But, like I said, for the most part the Maca takes care of the temperature issue. Don't know where you are on the grand calendar of life, but I found that it sure helps for me. Whenever I feel the body heat begin to climb, I take some. Don't know if it is related to my age, but it sure helps the temperature and the sweating. P.S. Ladies don't sweat, they perspire! Ha Ha Ha! Janet From: Janice Nichols [mailto:jan...@centurytel.net] Sent: June 17, 2010 9:33 PM To: tmic-list@eskimo.com Subject: [TMIC] The Sweats Would like a count of those bothered with the sweats - the really hot drippy sweats, even when in a relatively cool atmosphere. My doc calls it disautonomia. It is the pits.Have it some in the winter, but it is really a problem in the summer. Anyone else, male or female, have this problem? Janice
RE: [TMIC] EFT
Try www.emofree.com From: Amanda Diskey [mailto:adis...@yahoo.com] Sent: June 5, 2010 8:30 AM To: Janet Dunn; tmic-list@eskimo.com Subject: Re: [TMIC] EFT what is EFT, and what does it do? _ From: Janet Dunn j.d...@shaw.ca To: Akua a...@artfarm.com; tmic-list@eskimo.com; tmic-l...@eskimo.net Sent: Fri, June 4, 2010 11:34:22 PM Subject: RE: [TMIC] EFT Yes, I have used / tried EFT. It is a very interesting concept. I believe it works, Janet -Original Message- From: Akua [mailto:a...@artfarm.com] Sent: June 4, 2010 9:30 PM To: tmic-list@eskimo.com Subject: [TMIC] EFT Has anyone used or tried EFT? --
RE: [TMIC] EFT
EFT is the Emotional Freedom Technique, and it uses tapping to release trapped emotions. It works, and it works quickly. I think it is on Dr. Mercola's web page, but by googling EFT you should be able to find it. It is a treatment that you can do yourself. Very effective. Janet From: Amanda Diskey [mailto:adis...@yahoo.com] Sent: June 5, 2010 8:30 AM To: Janet Dunn; tmic-list@eskimo.com Subject: Re: [TMIC] EFT what is EFT, and what does it do? _ From: Janet Dunn j.d...@shaw.ca To: Akua a...@artfarm.com; tmic-list@eskimo.com; tmic-l...@eskimo.net Sent: Fri, June 4, 2010 11:34:22 PM Subject: RE: [TMIC] EFT Yes, I have used / tried EFT. It is a very interesting concept. I believe it works, Janet -Original Message- From: Akua [mailto:a...@artfarm.com] Sent: June 4, 2010 9:30 PM To: tmic-list@eskimo.com Subject: [TMIC] EFT Has anyone used or tried EFT? --
RE: [TMIC] banding
Ah, yes sir. When I am in an emotionally charged situation, that is the first sign. And if it happens to be when I am in a vehicle, it gets worse. Interesting. The other time the banding is really bad is after I eat. Should be a good way to diet, but unfortunately it isn't!!! Janet -Original Message- From: Dalton Garis [mailto:malugss...@gmail.com] Sent: June 5, 2010 3:50 PM To: Kevin Wolfthal; tmic-list@eskimo.com Subject: Re: [TMIC] banding I do. In fact at those times I go into muscular convulsions and caN barely talk. Dalton Abu Dhabi --Original Message-- From: Kevin Wolfthal To: tmic-list@eskimo.com Subject: [TMIC] banding Sent: Jun 6, 2010 12:28 AM Does anyone find that the sensation of banding worsens during times of emotional stress? Kevin Dalton Garis Abu Dhabi +971-050-668-5760
RE: [TMIC] EFT
Yes, I have used / tried EFT. It is a very interesting concept. I believe it works, Janet -Original Message- From: Akua [mailto:a...@artfarm.com] Sent: June 4, 2010 9:30 PM To: tmic-list@eskimo.com Subject: [TMIC] EFT Has anyone used or tried EFT? --
RE: [TMIC] alive
What I am really wondering is if one ever really gets to the point of accepting this thing? It has almost been six years (August) and daily I have to decide whether to get up and work with it, fight it, or give into it. Most of the time I fight it. Working with it would make my life easier I suppose, but darn it, I am with Jeron . It has taken a lot away. One of the things that I have discovered after fighting it so hard for five years - to get back to where I used to be before being struck with TM - was that either way, TM or no TM - I could not regain my former self. It would be like suddenly becoming 30 again. It isn't going to be. I would have aged 5 years whether I had TM or not. That made it much easier for me to realize that life is going to go on, I am going to grow older, and with age comes limitations, TM or not. That might not make sense to others, but it sure helped me quit fighting so hard, and to accept the down days. It also enabled me to lift up my head, look around, and realize that my friends and acquaintances all have their own struggles with growing older, they are just not as visible as mine. Most of them deal with pain every day, in one way or another, just as a matter of course of growing older, and what that in itself can do to the body. But, Jeron, I do totally get where you are coming from. And I wish I could go scuba diving today too - especially since there is a heavy snowfall warning in effect for my area. On May Long weekend no less! Janet
[TMIC] May Long Weekend
Hi Again Jeron, I am really jealous now. You are in the Caribbean, and you, Dalton, appear to be in Abu Dhabi, both places are warm. Here it is 0 degrees Celsius, and it is snowing, and it is supposed to snow all night up to 10 cms. That sucks. Big time. So, continue to share those stories, because I am going to be sitting in front of a warm fire, inside, watching it snow on the green lawns, the flowers, and all over the trees that are in blossom. How dreary And you all know what cold does to the legs and banding with TM. Janet
RE: [TMIC] Neurontin
Hi Heather Thanks for asking. I just don't know what to think. After raising the TM alarm bells (significantly), the neurologist sent a letter to the family doctor, stating that the problem is organic in nature. That the pain is coming from the brain itself, and not from the spinal cord lesion. That he does have reduced feeling and strength. That he does have decreased sensation. That it is not TM and not MS, but he does not know what it is. Geesh, thanks for scaring the crap out of us. He does have a lesion at T2. He does have significant pain and weakness. They have put him on Baclofen 10 mg 2 times a day, and Carbamazepine CR 200mg twice daily. The goal being to manage the pain and to get him off of the percocet. The neurologist is hoping that he will heal, as he has youth on his side. Am I angry? Yes. Am I frustrated? Yes. This young man has been dealing with this for over a year now, and it has not gotten any better, and fortunately not much worse, other than the pain. The prognosis is just what I said: hopefully he will heal. You would think, that in this day and age, when we can do so much, that somehow they could figure out what is wrong with him. So, a big thank you to all of my TM family. While this is not TM (sorry for passing that on, but that was the info that I had) this is a Spinal Cord Injury. It does not change the tears that I have shed, and will shed. I am at a loss as to what to say, do or think. Janet From: Pieter and Heather [mailto:pieterheat...@shaw.ca] Sent: May 18, 2010 10:09 AM To: Janet Dunn; 'Robert Pall'; tmic-l...@eskimo.net Subject: Re: [TMIC] Neurontin Janet, How did your son make out at the doctors? Are they going to be putting him on some meds to help with his pain? This has to be just so hard for him. Heather in Calgary - Original Message - From: Janet Dunn mailto:j.d...@shaw.ca To: 'Robert Pall' mailto:rp...@neillsupply.com ; tmic-l...@eskimo.net Sent: Monday, May 17, 2010 10:45 AM Subject: RE: [TMIC] Neurontin Hi Rob. I couldn't take neurontin. I am on Lyrica, have been for four years now. 75 mg a.m. and 150 mg p.m. It has virtually stopped the banding, and the burning in the feet. I am actually going to lower the dosage to 75 twice a day. However, that has been delayed because of my inability to pace myself so I have paid for it with high pain levels in my legs - but not nerve pain. I am also taking effexor, welbutrin, and long acting oxycodone. I supplement that, as needed, with regular oxy during the day - so if the pain is high - then oxy during the day, or baclofen, - it is a tricky road so I monitor my symptoms constantly. I am seeing a pain specialist in Vancouver BC three times a year - he just writes a script for many months, and I fill as I see fit. That is how it works here in Fort St John. Now, with my son exhibiting what the neurologist is labeling TM, I have no idea what the doctor is going to do here in town. We will find out today - right now he is not managing his pain - he is simply coping with it - I am tough, I can take it (he is 15). He takes 2 percocet in the evening so he can walk the dog - he uses a cane. Good luck with the neurontin - my money is on the lyrica and the effexor - in combination they work wonderful. I do not know what is in Cymbalta, and honestly - I will google it asap. Janet
RE: [TMIC] Neurontin
Hi Rob. I couldn't take neurontin. I am on Lyrica, have been for four years now. 75 mg a.m. and 150 mg p.m. It has virtually stopped the banding, and the burning in the feet. I am actually going to lower the dosage to 75 twice a day. However, that has been delayed because of my inability to pace myself so I have paid for it with high pain levels in my legs - but not nerve pain. I am also taking effexor, welbutrin, and long acting oxycodone. I supplement that, as needed, with regular oxy during the day - so if the pain is high - then oxy during the day, or baclofen, - it is a tricky road so I monitor my symptoms constantly. I am seeing a pain specialist in Vancouver BC three times a year - he just writes a script for many months, and I fill as I see fit. That is how it works here in Fort St John. Now, with my son exhibiting what the neurologist is labeling TM, I have no idea what the doctor is going to do here in town. We will find out today - right now he is not managing his pain - he is simply coping with it - I am tough, I can take it (he is 15). He takes 2 percocet in the evening so he can walk the dog - he uses a cane. Good luck with the neurontin - my money is on the lyrica and the effexor - in combination they work wonderful. I do not know what is in Cymbalta, and honestly - I will google it asap. Janet From: Robert Pall [mailto:rp...@neillsupply.com] Sent: May 17, 2010 5:43 AM To: tmic-l...@eskimo.net Subject: [TMIC] Neurontin I went last week to a new Neuro recommended to me by Dr. Kerr. Besides having me take new MRI's including the brain (never had this one before) he is taking me off Cymbalta and starting me up on Neurontin ( 100 mg per day). He saw no reason to be taking Cymbalta as I am already taking Lyrica and according to the new Dr. both Cymbalta and Lyrica do the same thing and taking both of them is not effective it is just overkill. I wonder if any of the other members who are taking both Lyrica and Cymbalta were ever told this.and what should I expect from the neurontin? I am hoping it will help the banding. What negative side effects have any of you suffered with the neurontin? Thx Rob in New Jersey
RE: [TMIC] Thank you
Hi All I am not sure about the States, but here in BC the Medical Marijuana that I was on was in pill form. Did nothing. Cranked up the dose, did nothing. Cost me a darn pretty penny too - $700.00 for a one month supply. I would have been better off to talk to my son's friends, paid my money, and smoked my chances! Janet From: Janice Nichols [mailto:jan...@centurytel.net] Sent: May 17, 2010 11:26 AM To: Robert Pall; tmic-l...@eskimo.net Subject: Re: [TMIC] Thank you I need to check this out for Missouri! I take 1800 mgs of neurontin - was taking 2100, but was sleeping too hard at nite. I take 1 with breakfast, 2 at lunch, and 2 at dinner. Then at 8:30, I take 2 baclofen for leg spasms when I go to bed. Works pretty well. Janice From: Robert Pall mailto:rp...@neillsupply.com Sent: Monday, May 17, 2010 12:35 PM To: tmic-l...@eskimo.net Subject: [TMIC] Thank you Thank all of you for your help with Neurontin.last question.what dosages are you all taking.. Finally I welcome the fact that New Jersey has adopted Medical Marijuana..on a personal level no drug has ever taken away the discomfort of TM more than Pot. I woukldn't work,or drive on it..but if you are just home and chillin out nothing works better for me! And I have been on this particular drug for more than 40 years! Rob in New Jersey
RE: [TMIC]I tried Marinol too
I was on cesamet. Janet From: fr...@franksheldon.com [mailto:fr...@franksheldon.com] Sent: May 17, 2010 1:07 PM To: Janet Dunn; 'Janice Nichols'; 'Robert Pall'; tmic-l...@eskimo.net Subject: 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]I tried Marinol too
Cesamet was the medical marijuana that I was on - and it did nothing. Except cost me money. Janet From: Janice Nichols [mailto:jan...@centurytel.net] Sent: May 17, 2010 8:55 PM To: Janet Dunn; fr...@franksheldon.com; 'Robert Pall'; tmic-l...@eskimo.net Subject: Re: [TMIC]I tried Marinol too What is cesamet and what does it do for you? Janice From: Janet Dunn mailto:j.d...@shaw.ca Sent: Monday, May 17, 2010 9:52 PM To: fr...@franksheldon.com ; 'Robert mailto:rp...@neillsupply.com Pall' ; tmic-l...@eskimo.net Subject: RE: [TMIC]I tried Marinol too I was on cesamet. Janet
RE: [TMIC] My Son
Hi Cheryl That is the really odd thing. I said that it was TM right away when it happened, but they poo pooed me, as they know best and said it wasn’t. Even the specialists in BC Children’s hospital said no. He had a bad headache from the lumbar puncture that they gave him, and they concentrated on that. They put it down to a psyche case, since he could walk without the cane sometimes. We had to go through a psych evaluation and everything, so when the year was up, then they revisited it. We actually took him to Alberta to get the diagnosis. The neurologist there at least has some experience with TM. I am hanging in, and he, of course, is being tough. Thanks for the email. Janet From: rn11...@yahoo.com [mailto:rn11...@yahoo.com] Sent: May 6, 2010 4:25 PM To: Janet Dunn Cc: tmic-list@eskimo.com Subject: Re: [TMIC] My Son Janet, I'm so sorry.It must be awful to hear the diagnosis for your son. You would think they would have looked at tm sooner since you have it. Do you know why they took so long to get the diagnosis? Just know that all on the list are thinking of you and your son. Cheryl in Easthampton,Mass. --- On Thu, 5/6/10, Janet Dunn j.d...@shaw.ca wrote:
[TMIC] TMIC Neurontin--does it exhaust you?
Different for everyone I see. Neurontin made me swell up. I am on Lyrica. 75mg a.m. 150 mg p.m. Sure has helped the banding and burning. Janet From: Janice Nichols [mailto:jan...@centurytel.net] Sent: April 17, 2010 8:25 PM To: Jill Posner; Neil McNeil; we4king...@verizon.net; tmic-list@eskimo.com Subject: Re: [TMIC] TMIC Neurontin--does it exhaust you? Jill, That is what Lyrica did to me too - bloat, swell, bloat.Hated it. I take Neurontin with no side affects, but I only take 1500 mg's.Hope you find something that works better for you. Janice From: Jill Posner mailto:posnerj...@yahoo.com Sent: Saturday, April 17, 2010 5:23 PM To: Janice mailto:jan...@centurytel.net Nichols ; Neil McNeil mailto:n_...@hotmail.com ; we4king...@verizon.net ; tmic-list@eskimo.com Subject: [TMIC] TMIC Neurontin--does it exhaust you? I am new to it...am on 2400mg a day--600 mg 4 times a day. It leaves me feeling like a zombie and doesn't really eliminate the pain. Lyrica is in the same family so I didn't think it made sense to wind down and up again. And it seems to have more side effects. I don't care to be as bloated as a toad. Are there other options? Jill
RE: [TMIC] Chiro
Janice, I am not sure that he helps so much with the disease itself, but if the rest of your body is in alignment it helps you move better, properly, and takes a lot of pressure and pain away that otherwise would be there. I actually see my chiropractor very rarely, because for me, I find that the massage therapist – the kind that work you over – not the “relaxing” massage – actually works better for me. She gets the knots out of my legs and shoulders which then helps me walk better, taking strain off the hips and back, meaning less trips to the chiro, and more to her! And now she is moving L I think it is a decision that each makes for themselves – but I use them both, as my mobility is key to my mental health. Janet From: Janice Nichols [mailto:jan...@centurytel.net] Sent: March 31, 2010 8:17 AM To: Todd Tarno; Transverse Myelytis Subject: Re: [TMIC] Weather Does a chiropractor really help with this disease?I thought the pain came from just the nerves, not any where else.Course, I don't know much about chiropractors, but this struck me as odd. If he can help, that is great. Janice From: Todd mailto:toddtm2...@sbcglobal.net Tarno Sent: Tuesday, March 30, 2010 12:05 PM To: Transverse Myelytis mailto:tmic-list@eskimo.com Subject: Re: [TMIC] Weather My chiropractor can tell when a cold front is coming in, because my adjustment is very much hard for him to do. And that he doesn't need to go to the gym on that day. lol Todd in CC, TX
RE: [TMIC] Weather
OK, then, all you “sweat ers” out there. Especially you women – how do you handle the hot flashes with menopause and peri menopause. I find that they are not flashes, but freakin tropical heat waves. I cannot sweat below the waist, so the heat does not go throughout the body, but is trapped in the upper body. It has been a cold winter and spring here, and I am going around in tank tops with a blanket wrapped around my legs – half of me is HOT and the other half is not. Geesh, I always wanted to be a HOT woman, I just didn’t expect it to be when I was 47, very fluffy, and with a disability! J lol Janet From: Janice Nichols [mailto:jan...@centurytel.net] Sent: March 31, 2010 8:11 AM To: kevin weilacher; Robert Pall; Transverse Myelytis Subject: Re: [TMIC] Weather Kevin, I am right with you with the head-sweating with humidity - absolutely hate it!!!I have some hot spells in the winter (and we keep our house cool), but late spring to end of fall is miserable.They have a name for this problem, but I can't remember it.I know of one lady who moved from Missouri to Montana to have cooler weather with lower humidity because of this problem. Janice From: kevin weilacher mailto:hwyfli...@yahoo.com Sent: Tuesday, March 30, 2010 9:06 AM To: Robert Pall mailto:rp...@neillsupply.com ; Transverse mailto:tmic-list@eskimo.com Myelytis Subject: Re: [TMIC] Weather
RE: [TMIC] Weather
Hi Rob, and TM Family Oh, yes, the weather gets me every time. I live in northeaster BC. Our elevation is 2274 feet. I can tell the weather is changing 3 days before hand! The actual day of the weather change is the worst for me. Banding, pain, pins and needles, and it usually lasts about 24 hours after the storm hits. It is not only the rain that gets me - it is the snow storms. OMG. I don't care what the weather forecast is, I count on my legs If the storm is severe enough, it knocks me down for a day. Ah, the joys. And I don't know about everyone else, but walking through snow is very difficult for me. The snow is heavy, the boots are heavy, if I wear runners, they are heavy. Oy Vey, the joys of life. On the same topic - sort of - does anyone have difficulties riding in vehicles? If I sit in the back seat of a car or the front seat of a pickup truck, the bumps and rattling just does a number on me. The banding and the burning and the pins and needles - it all just makes me want to cry - and I load up on painkillers. Yesterday we got back from a whirlwind trip to Sherwood Park AB (near Edmonton) - roughly a 650 km ride one way. Yikes. But, we went to see Bill Anderson - so it was worth it, but today is a bit different! Janet From: Robert Pall [mailto:rp...@neillsupply.com] Sent: March 30, 2010 6:30 AM To: Transverse Myelytis Subject: [TMIC] Weather We are getting a huge amount of rain in the Tri-State area which started yesterday and is expected to end tomorrow. My question is one we have discussed numerous times .but if you will indulge me with your responses one more time. For me high humidity and rain seem to have a tremendous impact on how I feel. The banding in my legs feels twice as bad as normal.as do the numbness and pins and needles. Considering we have members in this group spread out throughout the country (other countries as well) I am interested in how weather and what type of weather (if any) makes TM worse for you. Rob in New Jersey
RE: [TMIC] Weather
Hey Frank Are you reading the book on HAARP – that’ll give you what you need to change the weather. The government does it all the time. J J From: fr...@franksheldon.com [mailto:fr...@franksheldon.com] Sent: March 30, 2010 7:56 AM To: kevin weilacher; Robert Pall; Transverse Myelytis Subject: 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
FW: [TMIC] Children
Ok, Janice, first day of spring or not, it is freakin cold here this morning. Minus eleven, with the wind-chill bringing it to -23C. And it is windy! An inside day for me for sure, I had planned on going fishing - yesterday it was beautiful and warm. So today with the cold, my legs are yelling at me. As for the familial thing: I was told no, it is not familial. However, my 15 year old son has extreme difficulties with his legs, the pain, etc. They have ruled out everything - the good and the bad - but he still has the same kind of pain that I do. He has a small spot on his spine at T2, but of course: there is no way that can be giving him the symptoms he describes I am hoping that it is not hereditary, as I have four children. Interestingly enough, when I was diagnosed, the afflicted son was the only one to ask that question! Have a great day. Janet From: Janice Nichols [mailto:jan...@centurytel.net] Sent: March 21, 2010 5:29 AM To: tmic-list@eskimo.com Subject: [TMIC] Children Good Morning. It is the first day of SPRING! I have a question for you smarter than me TM'ers. In the future, do we have any information on chances for our children ending up with TM also? Janice
RE: [TMIC] Working
It is very difficult to work and cope with the ongoing symptoms of the original attack. I am lucky in that I have an employer who makes generous allowances for me. Like today - I actually came home early for a nap. I am very lucky, and very thankful. Janet
RE: [TMIC] Working
I am trained as a Nutritional Consultant, and I work at the local Healthfood store. I am a licensed practitioner. However, since the TM attack, I have a very difficult time being on the floor, consulting with customers so I have moved to the office, where I do the invoices, and special orders. It could be a full time job, but I just do not have the energy. The pocketbook could use the money, but the body needs the rest. So, since money can't buy health, I shall just carry on. I am 47 and I pretend that I am semi retired! Go to work at 12:30 or later, and stay until 5:30. Like I said - I am grateful for my employer! Janet
RE: [TMIC] Lesions and Myelin Regeneration
I think that the improvement happens. For everybody? Depends. I have found a few improvements in areas, and some worsening in other areas. I take it one day at a time, because as we all know, anything can and usually does happen. But I drag my leg less now, and the intense banding eases up more readily. So I remain ever hopeful. And it has been since July 2004 that I have been afflicted. Janet From: Jan Hargrove [mailto:jmh1...@sbcglobal.net] Sent: March 10, 2010 8:51 AM To: lynne myers; tmic Subject: Re: [TMIC] Lesions and Myelin Regeneration I do not agree with the two year statement. My doctor never told me that I wouldn't get well, nor give me a timeline. The only thing he said would not return was my temperature control. He was right!! AND, I've had improvements throughout the 14 years tm's been in my lifeno matter how small, improvement is improvement and gives hope for more to come!! My 2¢janh _ From: lynne myers lynnemye...@yahoo.com To: tmic tmic-list@eskimo.com Sent: Wed, March 10, 2010 6:26:13 AM Subject: [TMIC] Lesions and Myelin Regeneration This is a quote from one of the message forum pages on TM website: Even though the lesion(s) are gone, there may be underlying nerve damage caused by the inflammation and the fact that the nerves were unprotected once the myelin got eaten away. The myelin grows back at 1mm a day, so it takes a while for the body to repair itself, BUT the nerve can remain damaged. You will know what damage is left at the 2 yr mark. After this you can still have some recovery but it is very small and unlikely to be very noticeable. This information is provided by one of the site administrators who is also a Registered Nurse.
[TMIC] The cold winter pain.
YES The pain has been intolerable. I am so discouraged by the constant dull ache, the burning and stabbing torso band, and the weakness in my legs. And the cold (-20 C / -30C) is way overboard. I'm heading to Hawaii, or Puerto Rico like BobbyJim suggested! Enough of cold northern Canada. What paperwork do I need? Lol Janet From: kimr1999 [mailto:kimr1...@bellsouth.net] Sent: January 31, 2010 6:28 PM To: L T CHERPESKI; tmic-list@eskimo.com; Grace M.; Janice Nichols Subject: Re: [TMIC] Yooo...hoooTMIC Members, where are you? well since were on tht cold... this winter has been the worst pain I have had to date. Anone else?
RE: [TMIC]
OMG Nerve Pain. Yikes. I get it in the banding around my torso. Down my right leg, on the outside, from the top of the hip to the bottom of the foot, and some on the left foot too, but not nearly as bad. It gets bad enough that I want to check out some times. I have found that lyrica helps. And percodan. And now my pain doctor has me on cesamet and oxycontin just to keep me sane. And the cold: We just came through a -40 degree temperature spell - that was awful. I actually had to stay at home for a few days as my mobility was seriously affected. This morning it is only -20, so my legs are only half as bad. Lol. Janet From: Janice Nichols [mailto:jan...@centurytel.net] Sent: December 19, 2009 9:15 PM To: tmic-list@eskimo.com Subject: [TMIC] Okay, I have another question. When we talk about nerve pain, are we all talking about from top of back thighs down to bottom of calves? Or do you all have some other areas that are affected?Does it ever get bad enough that it makes you all down? Mine will do that-like a knife tearing down the leg. I just wondered if we all felt the same thing in the same areas. Janice
RE: [TMIC] Age
Hey Janice I was 41 Janet - Original Message - From: Janice Nichols mailto:jan...@centurytel.net To: tmic-list@eskimo.com Sent: Thursday, December 10, 2009 10:35 PM Subject: [TMIC] Age Hey! I have a request. I was talking to my neuro and he was curious to know the ages that my website friends were when they were hit with TM.Do you all mind sending me that info - even if you only read messages and don't usually respond? I would like to get as many ages to him as possible. I told him you all were a pretty cooperative group! Thanks guys Janice, Missouri
RE: [TMIC] Fw: chiropractor
Hello I have always used a chiropractor. I used to take my kids to the chiropractor when they had ear infections and he would adjust their necks, and the ear infection would clear up. The chiropractor was my first appointment after my legs went numb. I totally trust my chiropractor. But not all chiropractors are created equal. Check around before you go to one. Ask friends and acquaintances for a good one that they recommend. Good luck. Janet - Forwarded Message From: Amanda Diskey adis...@yahoo.com To: tmic-list@eskimo.com Sent: Thu, November 12, 2009 3:14:13 PM Subject: chiropractor Does anyone here use a chiropractor or know if it is safe? My shoulders and neck hurt so bad, and I was wondering if it might help me. the lady i talked to also does massage which i will definitely do, but i was wondering about the getting adjusted part. it seems a little scary to me though. any advice or thoughts? thanks amanda
RE: [TMIC] Alpha Lipoic Acid
This is a very powerful antioxidant. From: Regina Rummel [mailto:regina...@sbcglobal.net] Sent: October 24, 2009 9:00 AM To: tmic-list@eskimo.com Subject: [TMIC] Alpha Lipoic Acid My doctor suggested I take alpha lipoic acid. Anyone in the group taking it? I had never heard of it and am curious to hear your comments. Many thanks! R
RE: [TMIC] Looking for TMr's for support groups
I'm Janet Fort St John BC Canada -Original Message- From: Laura Beaudin [mailto:laura.beau...@gmail.com] Sent: September 13, 2009 6:30 PM To: Catherine Cc: kevin weilacher; Transverse Mylitis Group Subject: Re: [TMIC] Looking for TMr's for support groups ...and I'm Laura from Edmonton, Alberta. :) On Sun, Sep 13, 2009 at 7:25 PM, Catherine camoa...@yahoo.com wrote: Kevin, That is a wonderful idea. Why don't we all just say where we are from .. as I have seen here. Several support groups may start. Thank you for a great idea So I will start... Catherine, caretaker Central Mass.
RE: [TMIC] BM'ers Club
Do you mean, with the BM'ers Club, that there are no embar ass ing questions? Very tongue in cheek. Janet From: Patricia Cooley [mailto:patticoo...@wi.rr.com] Sent: September 8, 2009 6:53 AM To: 'Janice'; fr...@franksheldon.com Cc: tmic-l...@eskimo.net Subject: RE: [TMIC] BM'ers Club JANICE AS A MEMBER OF THE BM'ers WELCOME ABOARD. ONE OF OUR BY-LAWS IS THAT THERE IS NO QUESTION TOO EMBARRASSING, ETC. WE CAN ALL FEEL TO ASK WHATEVER CONCERNS US. YOUR RIGHT, NO NE IS PERFECT, LESS OF ALL ME. HAVE A GOOD DAY AND TIAD PATTI - WISCONSIN From: Janice [mailto:jan...@centurytel.net] Sent: Monday, September 07, 2009 9:52 PM To: fr...@franksheldon.com Cc: tmic-l...@eskimo.net Subject: [TMIC] BM'ers Club I would like to belong to the BM'ers club also. I will try very hard not to ask too many questions and will try to keep them fairly intelligent. Of course, no one is perfect! Janice
RE: [TMIC] That banding feeling
Hi I just have TM. Ha, just have. What a thing to say. I have TM. And I have no evidence of MS or anything else. And the banding has been helped by lyrica. But the burning/razor blade feeling has not been helped. And my legs ache. Like chewing on a piece of tinfoil ache. All the time. Drives me crazy. Glad that you only have a very mild case of TM. I was told by a neurologist in Vancouver that if you are going to have another TM attack it will occur within 5 years. This is my 5 year anniversary month. Yay me. Janet From: laura.eich...@gmail.com [mailto:laura.eich...@gmail.com] Sent: August 10, 2009 8:56 PM To: tmic-list@eskimo.com Subject: [TMIC] That banding feeling Those of you who got that banding feeling do you all just have TM or did you also get subsequently diagnosed with MS too? And if you did experience the banding feeling, did you experience it at the beginning of your TM (or MS) journey or somewhere down the road? :-) Just wondering if TM'ers get the banding feeling or is it only those that get MS too. I had it at the start of my TM but it went away after a month or two. I had a very mild case of TM and as of yet not diagnosed with MS. Thanks! -- Laura
RE: [TMIC] question
Hey Jeanne When you say that the pain starts worsening at T4 (which is where mine is) and you know the rest is coming, what do you mean by that? I am finding lately that the fatigue is awful. I spent yesterday morning garage saleing, and then the afternoon was naptime. Today, I could hardly drag my butt out of bed, and I did a little yard work this afternoon, and then back to bed. The band is like a jagged razor blade, under my breast. I just get so tired, and so sore. That is what frustrates me. And yes, the constant work at keeping the plumbing working. Yikes that makes me crazy. One thing changes in your routine, and you are down for the count for days. Enough of that. Janet
RE: [TMIC] Question for people on Lyrica?
OH Cody How you have made my day. And all this time I have denied myself the pleasure of a tall cold one. God Bless Ya, I am a happy camper to hear this news. Janet TIAD but I've got today to get through. From: Cody [mailto:c...@austin.rr.com] Sent: June 17, 2009 4:41 PM To: TMIC; Robert Pall Subject: Re: [TMIC] Question for people on Lyrica? RobertI specifically ask my new pain management doctor about this subject. I ask because my wife always gets after me when I want a scotch and reminds me of the Lyrica warning label. I am on the same dosge as you 150mg 3XD and Baclofen as well. He said no problem with a beer, a scotch or a glass of wine. He just said be careful and not overdo and absolutely don't drive. He also said the warning labels are written by lawyers and not by doctors or pharmacist. He said the caution on the warning labels are appropriate but there is a certain element of CYA for the drug company built in as well. I never have over two drinks and most of the time only one and not every day either. So that's my 2 cents worth for the day as I sip my glass of Pinot..Cody in Austin E-mail message checked by Spyware Doctor (6.0.1.441) Database version: 6.12630 http://www.pctools.com/en/spyware-doctor-antivirus/
RE: [TMIC]
Hi TM @ T4-5 I have the banding, at the bra line, 3-4 thick and on the right side of my torso. I sometimes get the banding in my legs, and like others, my feet, especially the right one have an elastic around them. Lyrica, 150 mg 3x a day has helped with the banding. Over exertion, stress and fatigue will bring it back with a vengeance. My legs do not like the cold, and are usually always cold. We don't really get hot up here, except for maybe 2 days a year (lol) so the heat thing is hard to say. I don't do well with a hot bath. Fatigue is huge, most of the time, and the pain is a killer. If it is not the banding, it is the ache in my legs. Luckily when it gets too bad, my DR lets me go to emergency for a shot of Demerol. Then I sleep for the day, and am good to go again for a month or two. I find that I sweat easily, and am hot in the upper body. Not bad - being hot and 46! Lol Janet From: Janice [mailto:jan...@centurytel.net] Sent: June 11, 2009 6:41 PM To: transverse myelitis Subject: [TMIC] This is Janice, I have 2 questions: 1. With hot weather coming, do any of you have a problem with all of a sudden being really hot? I know some of you had a problem with the cold last winter, but does your body change in summer and you get hit with being hot instead of cold?I really have a problem with heat - especially with humidity. I get hot, then weak. Not good. 2. Several of you have mentioned the tight band around your body. I am not sure this band is in the same place for everyone.Also, has there been any change in the band with those of you who have had TM for a long time?
[TMIC] Occupations
Hi All I was working at the local Health Food store in 2004, as a Nutritional Consultant. My legs had been asleep for awhile - I had gone to the Chiro and the Massage Therapist in case I had a muscle knot somewhere. Nothing. I continued to lose feeling over the course of several weeks, and my legs just hurt. It felt like there were clamps around my knees. It wasn't until a really good looking young man made a pass at my by touching my butt and awaiting a response, that I realized something was dreadfully wrong. By this time I could hardly walk, there was a horrible band around my chest and I was admitted to hospital. An MRI showed a lesion at T 4-5 and I was treated for MS. I fought that decision, and finally two years later after a spinal tap I was diagnosed with TM. In the two years it took for a diagnosis, I fought hard every day to walk, to work, to look after my family (I am a single mom). In September of 2008 a neurologist said that that was it. No point in fighting anymore, as I wasn't going to get better. The damage is done. That sent me into a tailspin, as all I had known was to fight this thing. I do have good mobility. The cold weather sets my legs off. I have a problem with their temperature. Imagine, a heating pad in the summer! I am managed by lyrica, effexor, oxycodone, and flexeril when I need it. On really bad days, when nothing helps, my Dr. lets me have a Demerol shot to help with the pain. I have had lidocaine infusions, they did not help. I am currently off on medical leave, just to rest up and get it together. I have applied for CPP disability. I am back to fighting, but not as hard. It is more like managing now. I am not sure I will ever be able to manage working full time any more. I just get too tired. I lurk in the background. I appreciate so much all the comments that are made: like the accidental passing of gas - that was a relief, I thought I was really out of it when that happened, so I was glad to know it is part and parcel. Like the bladder issues. Like the medication issues, the depression, the suicidal thoughts. Although I do not contribute very often, I want you all to know that I truly appreciate everything that is said on here. And thank you to all of you for sharing. Janet Dunn
RE: [TMIC] herbs
Hi I work in a health food store, and have tried them all. There are a couple that MAY help somewhat, but emphasis is on the MAY. The company AOR - and I believe there is a branch in the States, and Europe, has a product made from the myelin sheath from certified disease free animals, cows, I think. It is no longer available in Canada, but perhaps in the other countries. It was used for MS patients to help rebuild the myelin sheath. Gaba can help with mood. Alpha Lipoic acid can help as an antioxidant, and help prevent further damage. Phosphytidal serine ( we called it PS) feeds every cell in the body. Lots of essential fatty acids. St. John's wort for depression - if it is mild. Did these work for me? Well, yes, and no. For the burning pins and needles banding pain, no. However, I am able to walk unassisted most of the time, and I have most of my feeling back. St. John's did nothing for my depression, and I still struggle with that, daily. Valerian by itself is not such a good sleep aid - bad dreams. Homeopathy - especially the Restful Legs by Hylands helps quite a bit. Hope that helps. Janet From: Amanda Diskey [mailto:adis...@yahoo.com] Sent: May 4, 2009 5:28 AM To: tmic-list@eskimo.com Subject: [TMIC] herbs hey everyone, I was wondering if anyone takes any herbs for their tm? i saw about the valerium root and melatonin for sleep, and i see advertisements for herbs to treat myelitis all the time online. so i was just wondering if anyone has ever tried any of them and what the results were. also, i loved the poems akua, i too am stuck in a wheelchair and it breaks my heart every day. It is so very hard not to be able to do the things you want to do any more. I want to walk again more than anything. A good friend of mine said that james 1:2 says consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that testing of your faith develops perseverance. You have to run this race with your eyes on Jesus or you will fall. She is probably the best friend i have and she inspires me to try harder. I know that faith will pull us through! http://mail.yimg.com/a/i/mesg/tsmileys2/21.gif amanda
[TMIC] Splint
Hello all. I wear a Dictus Splint. It is a cuff that fits around my ankle, fastened by Velcro straps. It has a D ring and an elastic. The elastic hooks on two hooks that are inserted into the lace holes on my shoes. It is great. I sure notice when I don't wear it. It makes a huge difference to foot drop. Janet http://www.lmorthotics.com/files/2305400/uploaded/Dictus%2520Ankle%2520Splin t%2520Outdoors%2520W.JPG E-mail message checked by Spyware Doctor (6.0.0.386) Database version: 5.11260 http://www.pctools.com/en/spyware-doctor-antivirus/ image001.gifimage002.jpg
RE: [TMIC] it's the smallest world
Although it is never “nice” to hear about someone’s suicide, it is, in a small way, reassuring to know that the feelings that I am struggling with are valid, and that others have them. And yes, you are right, some days I just want to curl up in bed and hope it all goes away. Some days it is all I can do to say I am “fine”. Janet E-mail message checked by Spyware Doctor (6.0.0.386) Database version: 5.11050 http://www.pctools.com/en/spyware-doctor-antivirus/
[TMIC] age related tm
Hi to all I was 42 when my legs went numb. Thought I had a pinched nerve. Hah. Janet in BC image001.gif
RE: [TMIC] Questions
From: jrushton [mailto:[EMAIL PROTECTED] Sent: April 19, 2008 10:31 AM To: tmic Subject: [TMIC] Questions Hi, everyone (again!) I have three questions for those who would be willing to respond: 1) Did you ever have chicken pox?yes 2) Did you ever suffer from shingles?no 3) Did you have a flare-up of shingles prior to your being stricken with TM? No, but I broke my wrist 6 weeks before that, from a bad fall. These are a few of the theories with TM and I'm just curious to see if any of 'us' have experienced any or all of these. Jeanne in Dayton
[TMIC] lidocaine infusion
Hello After listening to the conversations on lidocaine infusions, I decided to have one. So, my doctor had me meet him at the ER last night and away we went. Didn't really notice anything. He wants to do this every week. Ok, whatever. Now, today, after one whole day, yup, one whole day without the burning pain, I am ready to follow his orders. My question to Neil and Frank is: how long does this relief last? How many is to many infusions? And my thanks to you both for this discussion. Still have the banding, and the crawly feeling, but the burning is gone! Yay Janet
RE: [TMIC] Unidentified subject!
I have found that Lyrica works very well for that, at 75mg b.i.d. I am up to 150 twice a day now, and that is even better. Janet t4-t5 From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: March 9, 2008 5:58 PM To: TM Subject: [TMIC] Unidentified subject! Just seeing if anybody knows of a medication that works better than neurotine for the burning. (nerve pain) Thanks Steve Jabs from Pa.
RE: [TMIC] infra red sauna
Hi Wim I used to use an infra red sauna at the gym I was going to. At first it seemed to be just fine, but then after a few visits, it definitely made my legs worse. As in, the banding increased and they were not wanting to walk well. But as for the sweat - I was surprised that even my lower legs were wet with water! Good luck with your decision. Janet From: wim from holland [mailto:[EMAIL PROTECTED] Sent: November 7, 2007 3:43 AM To: TMIC Subject: [TMIC] infra red sauna Hi everyone Are there people with TM who have expirence with a infra red sauna? Because i have problems with also heat, swetting is a lot less below the DX parts. Also a hot tub did not give me more energy but made my leggs worse. But in cold times, as they come up now, it lookes a very nice idea for warming up my body. The question for me is than, can I stand up and come out again. Wim from Holland _ Windows Live Mail: Nu 2gb aan opslag - dat zijn maar liefst 1000 foto's - en nog steeds gratis! Windows Live Mail http://imagine-windowslive.com/mail/launch/default.aspx?Locale=nl-nl) __ NOD32 2642 (20071106) Information __ This message was checked by NOD32 antivirus system. http://www.eset.com
[TMIC] Muscle Biopsy
Good Morning I just got home from a 5 day hospital stay. I initially went in to the emergency dept with heart palpitations. Fortunately the ticker is fine. However my muscle enzymes were elevated, so I was kept in for awhile. Lucky me, I received 3 doses of Prednisone, then they switched me to Torodol (a NSAID), with shots of Demerol to combat the pain. Now I am on a muscle relaxant, and the Dr. is talking about sending me out for a muscle biopsy. Has anyone had one? What are they looking for? I am year 3 TM, and this is the first I've heard of a biopsy. Any info will be appreciated. Thanks, and enjoy your day. Janet
[TMIC] Pain Relief
Hello to All Like most of you I have the burning, pins and needles, electric shock, tingling feeling in my feet and legs. I am on Gabapentin and Perocodan. I just want to mention a lovely lovely cream that my Dr. has given me by prescription. I have it made at a compounding pharmacy - and let me tell you - it really helps quiet those nerves. The prescription label reads: Ketamine 4%Amitriptyline 2% in 100g of cream. Apply to painful areas once daily. This cream really works, the recipe came from a pain clinic in Vancouver BC. Worth a try, but in BC it is $67 for the 100g. But relief is worth it. Janet
RE: [TMIC] Pain
Hi All I have the constant burning pain in my feet. I have just recently (past 10 days) come off of Lyrica and back on to gabapentin. A few of reasons: 1) lyrica is so expensive, 2) I felt like I was needing the narcotics more, 3) I was wondering if my body was used to the lyrica and needed a change, and 4) I have been listening to all the chatting about pain, and meds, and by the sounds of it, the majority of us do well on gabapentin. I am scheduled for another MRI as it appears my legs are getting worse, and yet at the same time they are much better than they have been in a long time. Thanks Frank for the word picture - I am inclined to agree with you Janet From: natalie mizenko [mailto:[EMAIL PROTECTED] Sent: May 12, 2007 11:44 AM To: Transverse Myellitis Subject: [TMIC] Pain I have moderate to severe pain in my feet 24 hours a day. They tried tons of drugs while I was at Baylor Rehab. to get it under control. Many nights I couldn't even sleep still up at 8:00 to 4:00 to do all the exercise groups and training they had. Exhausted I was indeed then...but they didn't like you missing a course. Very intense training. Anyway, who else has burning pain like this in their feet all the time? It really never, never leaves me. I was checked on an MRI for MS cause my pain was so severe. Dr. said my pain was out of the norm to be as severe as it was but she believed it was real. Natalie _ Moody friends. Drama queens. Your life? Nope! - their life, your story. Play Sims http://us.rd.yahoo.com/evt=48224/*http:/sims.yahoo.com/ Stories at Yahoo! Games.
RE: [TMIC] Meds
I am on Lyrica, 75mg 2 x a day. I am not so sure it helps, but I am not yet willing to do without it! Janet -Original Message- From: Trudy [mailto:[EMAIL PROTECTED] Sent: April 22, 2007 6:44 AM To: Tmic-list@eskimo.com Subject: RE: [TMIC] Meds Just wondering, for those of you who take Lyrica what dosage do you take each day? Thanks Trudy I am on two 75mg. twice a day... __ NOD32 2210 (20070422) Information __ This message was checked by NOD32 antivirus system. http://www.eset.com
RE: [TMIC] Re: banding
Hello One of my biggest symptoms is the banding. Right under my right ribs, and often down my legs. I have been told it is part of the TM. There are days though when I wonder. The banding is sometimes so intense it takes my breath away. It also is quite bad around my knee, and my foot. As an aside, I am just coming out of a week of quality bed rest time as I apparently picked up a virus that got my TM to fire right up. Is this the beginning of another progression or does anyone know? The bright side to the whole episode is that the doctor on call that I saw actually is experienced with TM and jumped right on the symptoms I had and placed a call to a neurologist. (We are a bit isolated) She is treating a female patient with TM and understood a lot of the other symptoms I have. So, that is 3 of us in this town now. Janet From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: February 10, 2007 7:08 PM To: [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Subject: [TMIC] Re: banding Randy wrote about his doctor: He doesn't believe that anything can be done about the banding. His only comment is that it is just another symptom. I, too, have never gotten clear answers about this. My pains are minimal, but I've occasionally experienced the tight 'banding' on the lower right section of my rib cage. However, more often, it's less severe, and just feels sore as though I'm recovering from being kicked in the ribs. It's usually worse later in the day. But even more often, I feel a 'sore' type of pain just under my right ribs - almost like a cramp, towards the front - center of my body. For a long time, this was the only pain I experienced as everything else involved was totally numb. I even noticed it for a couple of days before the TM/paralysis hit. For the better part of a year, the neuro barely paid attention to my question, saying it was just part of the TM. Then the last time I asked her, she said I'd have to ask my regular doctor, as it had nothing to do with TM! (I interpret that as: 'I really have no idea and don't remember how I answered the last time you asked.') One of my concerns is that I may be ignoring something else that isn't part of TM. (I think it's in the area of my gallbladder, but then they checked everything in the ER when I first went in paralyzed w/TM, and I would think they would have caught it if it was a gallbladder problem.) Does my description just sound like 'banding', or different from what you folks experience? Sally
[TMIC] My town
Title: AOL Email Hi to all out there. I was in the valley of Ive had it (where I am sure most if not all of you have been once in awhile) when I turned on our local radio station and low and behold there is a benefit dance tonight for a man in my town (Fort St. John, BC) who has TM and is completely paralyzed from the chest down. He has had TM for a year. Here I thought I was the only one in this town. Anyway, his situation made me extremely grateful for mine I can walk, I can work, and I can control most symptoms with medication and I am fortunate enough to dance at his benefit dance, should I wish to. It was an eye opener to me, and I will be contacting him. I just read in the newsletter that there is a need for a support group in each province of Canada, and I have been contemplating starting one. This bit of news about another TMr has reaffirmed that perhaps that is what I should do. A big thank you to all of you for your support and encouraging words. Janet
RE: [TMIC] cymbalta question
I am not sure about cymbalta, but I do know that small amounts of antidepressants work very well for pain management. No, it is not all in our heads. One thing that I have found helpful for the pain/burning/tingling in my feet, (which I am glad others understand) is magnesium - whether in the form of Epsom salts baths, or magnesium citrate - it just helps a little, to take the edge off. I still sometimes resort to percodan. Janet -Original Message- From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: October 17, 2006 10:35 AM To: tmic-list@eskimo.com Subject: [TMIC] cymbalta question Greettings, I had my nuero appt last week and and my goal was see if I can get anything for my pain/burning/tingling feet and to get something to help me sleep. (I haven't slept in a month). He wouldn't give me any sleeping pills but he gave me cymbalta to help with the pain. I had tried it once before and quit cuz it either made me sick or week or both - I don't remember. (along with Nuerontin/lyrica and 11 other meds I've tried) I've taken it 3 times - only at night - and it has done squat for the pain. Question - is this a drug that needs a few weeks to kick in? Also - I've seen on tv that cymbalta is used for depression. why aere we taking a med for depression for pain? Are they trying to tell us the pain is all in our heads? Margie -- WOW! Homepage (http://www.wowway.com)
[TMIC] TM and recurrence
Hello I am just wondering if anyone has had another episode of TM after the original one? Mine has remained relatively stable for a year now, and I am just wondering if this will be the way it is now, or if it can flare up and be debilitating again. Being fairly new to the list, I am not sure if this has been covered before, my apologies if it has. Thanks Janet
RE: [TMIC] Re: Brain stuff or not
I had a neurologist tell me that I was leading everyone down the garden path, that I was blaming my car accident when really, there was nothing wrong. Finally after 2 years, he is recanting that as the spinal tap showed that there is an issue. I think, whether Frank was tongue in cheek or not, (which I think he was) - he hit a truth on the head. Humor does reflect reality! I appreciated the laugh. Janet - [EMAIL PROTECTED] [EMAIL PROTECTED] wrote: neurotic housewife? Your problem is that you're a female. Most doctors know that any symptoms reported by women are due to neurosis, symptoms reported by men are secondary to some disease process. I know that doesn't help. Have you tried taking your husband with you to the doctor's?? Good Luck F
RE: [TMIC]banding
I am so glad to hear of these accounts of banding. Mine is intense, and I often feel like I am so alone in this. You all have been aptly describing the feeling. At first I thought it was strained muscles, and have spent a fortune on Rolfing treatments to ease it off. (They didnt work) Thank you for sharing your experiences. Mine is on the right side, from the torso on down the leg, right to the foot. Janet From: Jill Z [mailto:[EMAIL PROTECTED] Sent: September 4, 2006 4:49 PM To: Krissy Z; TM List Subject: Re: [TMIC]banding I used to get the banding across the top and arch of my leftfoot as if I had an ankle brace on. I also would getaround on my left wrist. Krissy Z [EMAIL PROTECTED] wrote: My banding is usually my right leg, and some days better than others, the tightness around my ankle and knee...sometimes my calf, never really painful tho just tight like someone is gripping it tighlyor there is some weight around my ankle Krissy Zodda Tri State Support Group Leader (603)589-1894 http://www.geocities.com/tmladyk/home.html ~I'm In pretty Good Shape For the Shape I am in~ All-new Yahoo! Mail - Fire up a more powerful email and get things done faster.
RE: [TMIC] tingling
Hello My name is Janet, and I have just recently received the dx of TM. I have had TM for 2 years, but no one up here knew what it was. This reply is for Neda who is on 900mg of Gabapentin. I suffered greatly from the tingling and pain, and fortunately the Dr. who did the spinal tap switched me to Lyrica 75mg 2x a day. Worked well for a long time, but now I am needing 150mg at night. I have also used Percodan to help with the pain at night. Another thing to try is a good quality calcium/magnesium supplement, or just straight magnesium. (I am a Registered Nutritional Consultant and have worked in the Healthfood industry for over 7 years). Another thing to try is a good quality omega 3.6.9 oil. Lyrica is preformed Gabapentin, and really works quite well. Sorry to all on the list for taking some time to reply. I am still trying to come to grips with the diagnosis. Janet
