Pleased to meet you, Jeff; Your story has some similarities with my own.
I was working as a construction lineman in 1970, when I fell the last 30 feet of a 95 footer, climbing down. Smashed the lower back, was paralyzed in the left leg, bladder and some other stuff for a while, until a series of operations brought motor control back. It left me with lots of permanent difficulties and some episodic ones that were just as bad. But I could walk, got an education, and finally settled in much later on, as associate professor of economics. A year and a half ago, after flue-like symptoms, I awoke one morning and had lost control of my lower left sidethe side paralyzed after the accident. I got mostly better; then had another similar attack six weeks later. Then another one in another six weeks. MS, right? I then started having seizure-like attacks. My entire back side would contract; then the front side would contract, again. I couldn't breathe during the contractions and turned beet-red in the face. Sometimes I awoke from sleep not being able to breathe without sitting up, and have also had trouble getting the swallowing thing to work sometimes. I might wake up all sweaty and very sore, having had an attack during sleep. After the first attack of contractions I was diagnosed with Transverse Myelitis by an Indian doctor with lots of experience. They didn't take spinal taps or MRIs because I have 7 fusions and steel rods in the back, so they were relying on his considerable experience. The following summer doctors at Columbia-Presbyterian, who were able to perform MRIs but not a spinal tap, were not so sure that it was ever TM or MS. They didn't find any spinal or brain lesions, but only some "anomalies" in the brainstem. I still have these severe episodes of seizure-like symptomsthe EEG found no obvious epilepsy, but suggested that as a possibilitythat get worse under any kind of physical or mental stress. TM doesn't hold on like that after the acute stage has passed, I'm told. Stiff Person Syndrome? MS? Chronic Lyme disease? Lead paint and mercury poisoning from childhood? Exposure to solvents in the workplace? Don't know. I do know that I have real symptoms and need real results to deal with them. Thankfully, the medications that treat one of these CNS conditions are also used in treating all the others, and mostly make life bearable. I have this sack of physical difficulties; as long as the meds take care of the problem then I'll let the medical existentialists worry about names and origins. For me, the expensive, painful, frustrating and time-consuming medical odyssey to find out what it is, isn't worth the cost, as long as they already have reasonable certainty that it is likely something like "a," or "b," and the treatment regime is working, even working just so-so; because if they do find out exactly what it is, the meds will still work only so-so. That's a certainty, as we will never be symptom-free as we once were. I am in full agreement with my neurologist's theorynow supported to some extent by your storythat a combination of physical damage from the accident and follow-on spinal difficulties simply overloaded the central nervous system's ability to cope. There could also have been some brainstem damage from lead paint in the house, and mercury poisoning, since Mother was unable to keep me from playing in the big pile of coal across the street. So, when a mild case of TM came along, that was all that was needed to take me down, like going from fiber-optic broadband to copper wire dial-up. And now, I'm not getting any younger, nor any slimmer, putting even more pressure on things. So, it is not likely only one thing at this point, but a combination of the accident, TM, heavy metals, head injuriesdid I mention those?and the aging process. Throw in a little spinal arthritis, and then those insignificant daily strains, one after another, are enough to give days of pain and symptoms. I hope this helps. There do seem to be a number of us who have experienced serious or life-changing accidental physical damage to our spines who have gone on to develop TM, don't there? Let me know if I can share anything more, Dalton Dalton H. Garis Associate Professor of Economics And Petroleum Market Behavior The Petroleum Institute P.O. Box 2533, Umm al Nar Abu Dhabi, United Arab Emirates Office: +971-02-607-5070/5297 Mobile: +971-50-668-5760 From: jeff bernier <jeffsmokeea...@yahoo.com> Date: Wed, 1 Jun 2011 07:24:06 -0700 (PDT) To: <msersl...@yahoogroups.com>, <tmic-list@eskimo.com> Subject: [TMIC] the run around Resent-From: <tmic-list@eskimo.com> Resent-Date: Wed, 1 Jun 2011 07:24:58 -0700 hello,i havnt posted on here in years,recognise most of you and see alot of new names,just thought i would throw this out there and see what you all think. in feb 2000,i fell through a staircase fighting a fire and landed on my heels,i had a shockwave go up my spine and went over on my head.had no sighns of numbness or the pins and needles untill 3 weeks later,it got so bad i started falling on my face and became so weak the wheelchair was the only other option,i was given all the ms test and came up neg,but they found lesions on my c spine and were extremely quick to call what i had transverse myelitis ( inflamation of the spinal chord ).through the course of 5 years,i went through all the crap that comes with ms,everything from spasms,bladderdisfunct,sexual problems etc etc and experienced every range of emotion there is.in 2005 i was dx with ms after a positive lp and a small lesion on the brain,the lesions on the c spine were gone and i thought i was finally going to get some answers.well in jan i had a repeat mri done and found the spot on the brain is still there,but was told the spinal fluid they took in 2005 showed no sighns of demyl and they changed my dx back to tm.now how frustrating is that? 11 years,22 doctors,3 major hospital centers and 15 therapy centers later to be put back to square 1 with still no answers.what a circus. DIPLOMACY DOES NOT WORK WHEN DEALING WITH NUT'S HELL BENT ON DESTROYING US.
