Friends;
I have just finished getting a battery of tests from a neurologist and an internist in the most expensive medical market in the world, New York City. The result is that "something attacked my spine in the thoracic vertebrae, which is causing mild seizures, limb weakness and tissue pain in various parts of my limbs and torso, not to mention constant spinal pain; that I'll probably improve somewhat, but how much if at all is not predictable." Well, "Thank you very much!" I can add that the TM seems to have induced a mild form of epileptic seizures. I now return to the United Arab Emirates to see if I can still work while getting seizures during the work day. At least there I have a nice apartment with a nice recliner, in which I enjoy better sleep than in any bed. I can no longer drive, so that wonderful supercharged Mustang is up for sale. I used to think I could still drive but it is clearly too dangerous if my body goes into spasms and my brain blanks out. The pain thing. I have had a bad back since 15-years-old. Then at aged 22 I fell from a power pole while working as a lineman's apprentice, falling 30 feet and crushing several vertebrae and paralyzing me below the waist for until operations could clear the spinal column of bone splinters interfering with its functioning. I have had 5 operations and now have Harrington rods and 7 fused vertebrae. I feel lucky for this experience because when the TM pain came it was just another set of back-related pains affecting my body. It all certainly got my attention and was extremely painful-still is-but could be experienced as another in a long series of back related difficulties. I think that has made all the difference for my struggle with the disease compared to others who were totally healthy before becoming stricken by TM. For me, nothing worked that well before, so getting TM is just putting a few more pounds of stuff in the knapsack. For me, the biggest thing is getting these convulsions and seizures because these threaten my ability to make a living as a college professor. That is very new and very scary, and there doesn't seem to be anything to be done about them because their cause is still a mystery. Something to do with anomalies in the brainstem discovered in an MRI. I take about 600mg of Lyrica per day, and have prescriptions for more potent convulsion-blocking meds. I try not to use them because in my work you must at least try to look intelligent and as if there are some thoughts in your head. That doesn't happen when I take those stronger drugs, which make me look like a catatonic idiot. I pray that all of you can get at least some hours during the day where things seem relatively OK, as we live with this thing inside us which tells us what we can do and when we can do it. Dalton Garis _____ From: Janice Nichols [mailto:[email protected]] Sent: Wednesday, August 11, 2010 11:21 PM To: john snodgrass; lynne myers Cc: transverse myelitis Subject: Re: [TMIC] arghhh!!!!!!! Knowing that each of us is not alone is worth everything. I don't have much faith that our afflictions will change, but with taking newer and better drugs and exercising our bodies as much as we can, I feel at least we are doing the best we can. We need to stick together and help give out any drug information that we find works - even home remedies - if they work. I am not in a good place right now - body is relapsing and getting weaker, so maybe I am grasping at whatever is out there. So glad I am a part of this group. Janice From: john snodgrass <mailto:[email protected]> Sent: Wednesday, August 11, 2010 5:01 PM To: lynne myers <mailto:[email protected]> Cc: transverse <mailto:[email protected]> myelitis Subject: Re: [TMIC] arghhh!!!!!!! i guess theres a slim chance that some of us will have healing to our nerves,my neuro said that they have been known in some cases to just heal spontainiously over time....slim chance but a chance yet. my mind keeps thinking things will change. im sure they will, i just have to be prepaired for good or bad. after all it's me and Im the only one who can deal with my own thoughts. it is good to be in this company of people because it helps me to have thoughts that i otherwise would not have in the encouragments and knowing i am not alone. --- On Wed, 8/11/10, lynne myers <[email protected]> wrote: From: lynne myers <[email protected]> Subject: Re: [TMIC] arghhh!!!!!!! To: "tmic" <[email protected]> Date: Wednesday, August 11, 2010, 5:52 PM The MagCitrate is also great for digestion. --- On Wed, 8/11/10, randy rankin <[email protected]> wrote: From: randy rankin <[email protected]> Subject: Re: [TMIC] arghhh!!!!!!! To: "Janet Dunn" <[email protected]>, "john snodgrass" <[email protected]>, "transverse myelitis" <[email protected]> Date: Wednesday, August 11, 2010, 11:37 AM Baclofen was a big turning point for me - didn't know about MgCitrate - got to check that out _____ From: Janet Dunn <[email protected]> To: randy rankin <[email protected]>; john snodgrass <[email protected]>; transverse myelitis <[email protected]> Sent: Wed, August 11, 2010 2:44:06 AM Subject: 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:[email protected]] 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 <[email protected]> To: transverse myelitis <[email protected]> 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.
