one of the most stressful things i have observed is that our precious Dr's dont study cases as a lawyer would bugt point us to support groups like this one,and when you go back to some of them to report your findings they just dont "get it" as it is spoken.
I had one Dr who told me that she never had much time for extra study and for me to search and whatever I found that we had not tried that she would support me in it. well she had opportunity in another place that was better for her so she moved on. But with what information there is you would think that they would know it in full rather than here a Doc there a Doc with scattered remarks that in many cases do not agree. Sometimes it sounds like politricks to me,,do what they have to and then just slide. ________________________________ From: Janet Dunn <j.d...@shaw.ca> To: 'Dalton Garis' <malugss...@gmail.com>; 'TMIC' <tmic-list@eskimo.com>; tmic-l...@eskimo.net Sent: Wednesday, December 14, 2011 12:26 PM Subject: 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
