Kelly, I've had TM since Jan. 5, 2006. Here's some websites that might help with TM and related.
Help for meds can usually be done with/through the manufactures patient assistance departments. For general info with help try these website http://www.disabilityhelpsite.com/ http://www.christopherreeve.org/site/c.ddJFKRNoFiG/b.4048063/k.BDDB/Home.htm For Depression and help with nerve pain, I take Cymbalta. Try these websites: http://www.cymbalta.com/index.jsp Lilly is good about help with meds so try - http://www.lilly.com/responsibility/servingpatients/programs/ Another website for help with meds - http://www.pparx.org/ Some other meds are: Tizanidine (Zanaflex) for muscle spasms; Hydroco/APAP 7.5-500 Tab for break-thru pain; Tramadol HCL 50mg for pain, it is a narcotic; Gabapentin is a genetic for Lyrica - Try http://www.lyrica.com/index.aspx?source=yahoo&HBX_PK=s_lyrica&HBX_OU=51&o=44962814|221361396|0 and Voltaren Gel for pain in shoulder, arms, elbows, hands and legs. I also use an Electric Muscle Stimulator (EMS) for pain especially in my lower back and left neck/shoulder. I did use a TENS which is constant muscle stimulation but I've found that they EMS is better because I can program off/on periods of muscle stimulation. The muscles/nerves seem to like several seconds between the electrical pulsing. The EMS also delivers the stimul I've found that heat helps so I have multiple heating devices - heating pads, seat back covers with massage & heat (Homedic), back braces with removable gel pads that can be heated in the micro wave or chilled in refrig/freezer (which I never do because cold is torture to me). I also have back "packs" that are heated in the micro wave (I believe they are called Bed Buddy). For good info on TM try: http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/transverse_myelitis/conditions/ http://www.mayoclinic.com/health/transverse-myelitis/DS00854 http://www.answers.com/topic/transverse-myelitis http://www.ninds.nih.gov/disorders/transversemyelitis/detail_transversemyelitis.htm For info on SSD and SSDI help and info: http://www.disabilitysecrets.com/ http://www.disabilityclaimssolutions.com/newsletters.html http://groups.yahoo.com/group/Disinissues/ http://en.wikipedia.org/wiki/Employee_Retirement_Income_Security_Act http://www.ddbchicago.com/Quick%20links/federal-disability-laws.html http://www.lectlaw.com/tgvb.htm http://erisa.petti-legal.com/ http://www.lectlaw.com/files/gvb07.htm http://www.govbenefits.gov/ TM is a "cousin" of MS so much of the info regarding MS will apply to TM http://www.medhelp.org/health_pages/Multiple-Sclerosis/General-Principles-of-Treating-Neuropathic-Nerve-Pain/show/452?cid=36 I'm not sure if you were working or if so, if you had LTD through your employer. If you do, be prepared to fight them. Most employer based LTD insurance companies will try to quit paying after 2 years. I recommend that you join http://groups.yahoo.com/group/Disinissues/ This website has many great links and recommendations for fight the LTD companies. I hope some of the info I've covered will help you. To help explain to your family and friends how TM affects you, read and explain by the Spoon Theory - http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf 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. ----- Original Message ----- From: "Janice Nichols" <jan...@centurytel.net> To: "Kelly Jean Craig" <n2resea...@yahoo.com>, tmic-list@eskimo.com Sent: Friday, June 4, 2010 11:57:45 PM GMT -05:00 US/Canada Eastern Subject: Re: [TMIC] new member Kelly Jean, I have had TM since January of 2007. I just turned 60 the month before. I was paralyzed from the shoulder blades on down, but with proper meds, much physical therapy, and no one telling me that I would never do "whatever" again, I can walk on my own, sometimes with my cane. The banding is not that much of a bother now either. I was lucky to be living in a medical center with excellent doctors. By the 3rd day, they knew it was TM and had me on steroids immediately and for quite a while. It seems to have taken quite a while to get your diagnosis and start on the proper meds, but don't give up. My husband never told me the doctors didn't think I would ever walk again - it would have ruined my fighting spirit. If you feel you are not being treated properly, there are those that have gone to specialized places that have done research on the treatment of TM's damage to the body. Please keep emailing in to us. There is a lot of information that I know will be forthcoming from the other "TM'ers". Just keep in touch with us and good luck. If nothing else, we are able to help take some of the "isolation" feeling that we all seem to get from this disease being so rare. Janice, Missouri From: Kelly Jean Craig Sent: Thursday, June 03, 2010 11:58 AM To: tmic-list@eskimo.com Subject: [TMIC] new member Hi Everyone, Well, I was reluctantly admitted to the TM group last week. My name is Kelly Jean and I am 28 years old. I am a cancer research scientist, athlete, wife and pug lover. I was diagnosed after a strange string of events. I woke up two weeks ago with a coughing episode that left me feeling like there was a constrictive band around my chest. I thought I was having a heart attack. The ER visit left me feeling better after they gave me a Toradol injection in the left cheek . However, the next morning my toes felt numb and tingly on the injection side. As the day went on I noticed, the numbness and sensitivity was growing. By the next day, I couldn't stand to touch myself on the left leg. The worst pins/needles sensation you could imagine. Myy husband, splashed water on my leg near the garden and I fell down in pain. It was like someone poured liquid nitrogen down my body. I received my PhD studying a movement disorder (Parkinson disease), so I thought this could be peripheral neuropathy. I just knew that the nurse who gave my that Toradol injection damaged by nerves and I was having sensory neuron damage...little did I know. After 5 doctor visits and everyone saying these sensations would pass, I finally convinced another ER doc to give me an MRI. Almost 10 days later, they found a T3 lesion on my spinal column and 2 small lesions in my brain. They admitted me to the hospital and began my solumedrol treatments 1000mg/day x 5 days. The solumedrol nearly incapacitated me. I couldn't walk, lift my head, speak or chew. I was release from the hospital and I am just now on day 2 of my oral taper prednisone doses. I still feel like I am in a fog. My abdomen feels like a tons of bricks. After nearly two weeks of bed rest, I am feeling crippled physically and emotionally. My head aches just after sitting up for a few minutes. Does anyone else have this sort of reaction to the steroids? They did a lumbar puncture and we are awaiting the CSF lab results to rule out MS. Perhaps, the puncture hasn't fully healed yet. The doctors are guessing this was an infectious case of TM. I am praying that this is a monophasic event and this suffering will soon be over. Does anyone have any suggestions? Massage therapy? Physical therapy? Acupuncture? Reflexology? Homeopathic meds? I am desperate to be better. Any and all advice is welcomed. Sorry if this email seems to dance all over the place. Typing and reading this email has tuckered me out today. Thanks for your support, Kelly Jean --- On Mon, 5/31/10, Akua <a...@artfarm.com> wrote: From: Akua <a...@artfarm.com> Subject: Re: [TMIC] Shoes To: "Cody" <c...@austin.rr.com>, tmic-list@eskimo.com Date: Monday, May 31, 2010, 7:48 PM I wear hose and crocks and remind myself to turn my feet -- was getting a pressure sore on the side of my left foot from it laying on the side of foot rest went back to strapping feet in boots at night for a few nights > I am having a terrible time with pressures sores on my feet. I am interested > in hearing what kind of shoes those of you who have to use wheelchairs are > wearing. My problem is my left foot turns inward and lays on my footrest on > its left side. And that's where the pressure sore is located on the ball of > my foot just behind my little toe. My wife just bought me a pair of ankle > high boots which hopefully will tend to keep my foot straight with the ankle > support. I have been wearing regular tennis shoes. I would be interested in > what others are doing for shoes. The podiatrist put me in one of the boots > with velcro they use when you have foot surgery. Because it has high ankle > support it has tended to keep my foot straighter...Cody in Austin --
