Ruben - sorry to welcome you to our "elite" club. I "reluctly" joined the TM club on 1/5/2006 (T10 - T12) and then decided to become a "fully" fledged member by having a second attack by awakening on the 3 day home from the hospital, 1/30/206, which left me totally paralyzed from the neck down. With the 2nd attack, I had Plasma Exchange treatments - 7 in the hospital over 15 days and 7 as outpatient over 3 months. I can now "walk" and drive but most things that I do is limited to 15 minutes or so - therefore alot of things have to be planned such a laundry, dish washing and I try to do some house work but never can get a clean house. I live alone and collect a "good" SSD benefit but in doing so I am a couple of hundred dollars over the limit for additional help from the state and other benefits by making "too much" - between a rock and a hard place. I do however, realize that I'm much better off financially than a lot of others. I "walk" (like a drunken sailor) in the house by using furniture, walls, doors, counters, etc. I use a cane outside for no more than 20 - 30 feet, a rollator (4 wheels with a seat - HUGO brand) for longer distances up to 50+ feet or so otherwise, I need an electric scooter or wheelchair. I have lost about 50% of strengthen in my R arm/hand and left leg. I only have 30% of strength in L arm/hand and R leg. I lost most of my upper strength with the 2nd attack. Since then I have been dx'd with Sjogrens and SLE lupus - in other words, I have a "lousy" autoimmune system. I recommend that you see a rheumatologist. Most of us have found that our vit. D levels are low. Mine was less than 1/3 of the recommended levels. I now take 15,000+ units per day to keep my levels on the lower end of "normal". Also, a lot of us have low vit. B12 levels. Also, because of the steriods that have been used to reduce the lesions, we have issues with bone density.
I can't stand or walk at max for no more than 30 minutes or so and then I'm sweating, breathing heavy, and about to collapse. Most of my time is spent in my recliner or anti-gravity chair, or in bed. I never seem to be able to do everything physically that my minds thinks I can do. Life has made a 180 degree turn around. I use to do all my own yard work, even spreading 50lbs of fertilizer, top soil, decorative rocks, mulch, etc. Now lifting a gallon of milk seems heavier than any of those. After my first attack, I was like a 500 race driver in a manual wheelchair, whirling here there and everywhere - the PT therapist threatened to take my wheelchair away several times - it felt so good to be able to "run" after 2 weeks of being bed ridden. But after the 2nd attack, I could barely move the wheel chair before becoming exhausted. Fatigue is always there - some days just fixing a sandwich (2 slices of bread and a couple of pieces of meat - no condiments just throw some meat on the bread and put everything away) is exhausting - I've fallen asleep trying to eat. Even though I'm single (for 25+ years), a microwaved meal, fast food, etc. was only if I had worked a 14-16 hour day. Now, going to the Dr. or grocery shopping always requires 2 or 3 days to recover. Most of the problems you are experiencing are "normal" for TM'ers. I'm not sure what kind of help you need, please write and tell us more of your story or ways that you need help. That way we will know more of how to hwlp. 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 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 I'm sorry that it's taken over 2 hours for me to write this - even simple things take 3 to 5 times longer than normal. 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: "Ruben Dale Towery" <[email protected]> To: [email protected] Sent: Friday, May 28, 2010 7:16:09 AM GMT -05:00 US/Canada Eastern Subject: [TMIC] Newly Diagnosed and Need Guidance Hello everyone, I was just wondering if anyone out there knows if there is any foundation or organization that can help people financially with TM. I was diagnosed about 6 weeks ago, and my medical bills are piling up and with 4 children and a wife, it is starting to really take a toll on my family. Just wanted to reach out to everyone and see if there was anything out there to help. Also, I also wanted to ask the question to everyone out there is anyone else has experienced other problems besides TM, ie. chronic upper back pain, memory loss, confusion, etc... The reason I ask is I have been dealing with chronic upper back pain for a couple of years now and I am having a lot of mental problems as well, ie. a lot of anxiety, paranoia, depression, and a lot of emotional outbursts. All of this happened before I had my TM attack. Love this support group, really has given me some hope that I can go on and deal with everything. Thanks everyone in advance for your help. Ruben Mount Olive, AL
