Wow Randy, What an experience you have been through. I was wondering how your test came out...well I guess I know now. I know many of us have had problems with Dr's. It took me years to find a good one here. I don't know if your insurance will cover it, but if you could go see Dr. Kerr in Baltimore, he and his staff might really be able to figure everything out. That is what I did and it helped so much. I went for my MRI on Tuesday and they only did my brain and C-spine. Which is crazy because there has never been any problems with my brain and they didn't do my T-spine where one of the legions is. I even asked why do the brain MRI unless I am having new problems, just check my spine where the problems are? She said good point. Hopefully others on the list will have some good suggestions for you...but as for me, I don't think you are crazy. Non of us are, we just aren't being listened to by the Dr's. Take care and let me know if I can help. Maybe you can make it to the next Atlanta area TM meeting it is Dec. 1st in Douglasville. Jenna
----- Original Message ---- From: randy rankin <[EMAIL PROTECTED]> To: tmic-list@eskimo.com Sent: Thursday, November 8, 2007 9:45:45 PM Subject: [TMIC] my first time to vent! I guess the old saying is true, "There is a first time for everyting." I've been reading emails and rarely do I write much. So many people on this list seem to have much more on their plate to deal with than myself. This past week, I started getting results back from test. I still understand just about as little as I did a few years ago and I have yet to find a doctor to pull everything together and explain to me just what the hell is going on or was going on or will be going on. It seems that you are damned for trying to learn or find out information and you are damned for doing nothing. I went back to my primary care phy in August because for almost a year and a half I had missed my scheduled doctor appointments. I was sent to the hospital in 05 because I could not walk and I was hurting in my ass, back and legs so terribly badly. I was sent to the hospital 6 months later because I stopped peeing and it made me really sick with a high fever. In both situations, the doctors could not find an exact cause to the aliments and I was officially diagnosed in May 06 with transverse myelitis. In 05 I had been diagnosed with multiple myelopothy and my neurologist believed for a short time that it had the early stages of M.S. but he either forgot to tell me that he changed his opinion or I just forgot. So from April 2005 til May 06 I thought that I had or was developing MS and it scarred the hell out of me. In 06 when they explained that it was NOT MS but TM I felt like an idiot and decided not to go back to any more doctors. No one sent me to a physical therapist although I BEGGED to be sent to one. I also knew and had been told that I was having some serious memory, concentration, retention ect problems and it was significantly impacting my job at work at three different schools over a period of several years and it seemed to be getting worse. I also had this INCREDIBLE FATIGUE that I could not figure out what was causing it and I experienced NON STOP depression that lasted for THREE YEARS OF MY LIFE! and NOTHING I could DO, THINK, MOTIVATE myself do about it would change it. I told NO ONE about this. I just LIVED WITH IT. I only started telling doctors about it when it suddenly just WENT AWAY! without any explanation about 3 weeks after treatment for my partial paralysis experience in 05. So I wanted to know WHY it was there in the first place and WHY it disappeared and will it come back and can I do something to keep it from coming back. But when I asked my neurologist about it he said that it was the medication during the hospital that caused the depression, anxiety, ect and he wrote that information down. But he didn't LISTEN to the comments - I decided just to go on with life and forget these intelligent people. Meanwhile I suffered day after day night after night with pain in my back, ass and legs and sometimes my feet. I can't explain what kind of pain it is! It never stays the same! Sometimes it feels like electricity and most of the time it just feels uncomfortable. It feels like when you are standing on ice and you loose your balance and you try not to fall but you are going to fall anyway and the longer that you stand the more those muscles inside your legs and butt ect start hurting - that's what it feels like all the time - and it also feels like when you finally do fall and land on your tail bone and your butt and spine ache - but it doesn't feel like that specific moment when you actually fall, it feels like the pain one feels in their butt about 3 days later after they fell - if that makes any sense. I also suffered with mobility problems. I could walk! YIPPEE!!! I wasn't in a wheelchair or using a cane. So my neurologist told me that I was "a lucky lad" and "a walking miracle." Because I COULD walk, I didn't feel that I should yack about my problems because so many people cannot walk at all. I was "getting better." Nevertheless, I could not run or even jog. I could not work out in the gym without experience incredible pain and significant flexibility and mobility problems for the next three days after wards. People at work noticed that I was slow, that I dragged my right side when I walked, that I had to pee about every 15-30 minutes on some days. And of course many of them asked questions. I of course didn't really want to talk about it so I'd just say - "well, they think that I might have had MS or might be getting it but I'm getting better but it takes time." It made me uncomfortable. People would say, "You need to go get that checked out!" And I would say, "I already have. If I go back, they'll just say that they've already diagnosed me and that there isn't anything that can be done and if I ask questions, they'll just look at me like I'm crazy again and I'll feel like a fool." People also didn't like the fact that I was going to the bathroom all the time. The neuro tried to make me wear a catheter but I wouldn't. I'd rather just die than do that. Besides, I got to wear I could pee on my own albiet it would take about 3 or 4 trips to do a normal void. Finally, because my walking was not improving too greatly and the pain had gotten to where I was tired of dealing with it I decided to go to a regular chiropractor that my boss recommended. The little stretching routines that he performed made an immediate difference and my mobility and flexibly in walking immediately improved within a 2 week period! But the PAIN didn't go away. This motivated me to go back to my primary care phy. and get him to send me to some "real doctors" and get everything looked at and taken care of once and for all and maybe I could get back to a normal life. Well, he is a good doctor and sent me to several places for different test. Of course he seemed rather pissed off at me for ranting about every little detail that's happened in the past 10 years since my foot drop in 1993. I just wanted to know if all these events were random and distinctly different or if there was a correlation among them. I wasn't looking for attention or any special treatment. I asked him to see if he could get my a good neuro-muscular physical therapist and he rolled his eyes, grimmest and said that it was not his field. But he did send me to an excellent neurologist who took the time to hear all my pitiful woes and vexations and frustrations. She in turn sent me to have an lumbar MRI done because no one had ever taken the time to do that and she also sent me to see a neuro psychologist. The MRI report did not say anything about swelling or anything about TM. It said it a nut shale 1. I have mild degenerative disc disease - which also showed up in the cervical and thorax as well since 05 2. I had decreased or narrowing of the spinal cord, 3. I had increased signal from several points from L5 to S1 - which someone said indicated inflammation. My neuro/muscular phy therapist said that none of that would cause me to stop walking or peeing and that he believed that the loss of muscle in my gluts, hams, gastro quads, isolats ect was causing me to use my back muscle to compensate and that was pulling on my spine and causing pain. But the thing that really motivated me to write this frustration and vexation is what the neuropsych wrote. The one good thing that came out of my meeting with him, besides the fact that I'll never have to see that ass again, was the fact that at least I showed high intelligence in language comprehension and a capncity for learning new things. I would certainly hope so. I have 4 degrees and I'm finishing up my doctorate. My scores for verbal and visual attention, mental concentration, short term and long term recall was terribly poor. He noted a decline in motor strength and speed on my right side and probably with logical analysis and sequential reasoning. On some of the test, I scored as low as a 2th, 9th and 12th percentile. All of that information bothered me significantly. On my general intellect and learning capacity I had scores ranging from the 82th to 91th percentile. But what really upset me was his written comments that I am "probably experiencing severe personality deterioration ... likely to have problems with intense anxiety, somatic distress, agitation, and anger ... and problems cause by general ineffectiveness in dealing with life." What really made me "anger" is that he wrote that I am "likely to demand much attention for (my) somatic complaints, which may have a distinctly bizarre flavor ... views his physical health is failing .. reports numerous somatic concerns ... feels that life is no longer worthwhile and that he is losing control of his thought processes." The mother comment of them all was, "he tends to manipulate other by developing physical symptoms." I really have just about had it! I've gone for three years and have complained hardly to anyone. Since I've been a member of this little email circle, I have rarely even sent out an email! For someone to tell me that all this pain, mobility, and this noticeable problem that I've been having with remember things is all just in MY HEAD and that it is manifesting just for the sole purpose of manipulating others and trying to gain attention just has REALLY FLOORED ME! All I have ever wanted was to get better and get COMPLETELY over this and go on with life! I've told all my doctors that I believe that I have gotten better, that I am GETTING better and I just want to get PERFECTLY better. Yet now I feel like an idiot. He asked me why I didn't go out and socialize more often - - - well, DUHHH, it doesn't really take a rocket scientists to figure that out! Yet he took it to be an illustration of my "interpersonal relationship" problems which are "probably disturbed." Ok - so this was a rather lengthy letter but I'm just really irate! Has anyone experienced anything like this before? Am I really just crazy!? Did my subconscious tell my feet to suddenly stop working, then my lower legs, then my waist and then my lower half of my body? Did stop peeing and get a fever of over 104 several times because I wanted attention? I had a IQ reading of 139 when I was in 10th grade. I graduated from college with a B.A. in history and minor in laboratory biology. I took an average of 21 credit hours non stop for three years. I took classes such as histology, hematology, physiology, while simultaneously studying French, German, Latin, as well as tons of courses in History. I went to France when I was 21 and studied in Nice - in French. I moved to Russia and lived there for three years and taught English. I learned Russian. I went back to the states and studied Greek and spent a year in theology school. I got a M.S. in Education followed by a M.A. in History followed by a Specialist degree in Education and then bamm my world stopped. I suddenly couldn't remember how to get to work without calling and asking the secretary to direct me to school. I would sometimes still get lost, disoriented and confussed. I suddenly can't make change with money. I suddenly can't deal well with basic fractions and have to stop to remember names, places, times, faces, important events, how to file, how to find my keys, remember when to pay bills. My employeers noticed it. I went for 3 to 4 years teaching with excellent marks and suddenly I get one repremand after another for missing deadlines, being "lacidasical in meetings," unable to follow directions, moodly and iritable, ect. In the past year, it seems to all be improving, at least in many areas. Yet the test results show that I have a significant cognition deficit. I went from being able to study for test for a short period of time and pass with A's and B's to suddenly finding it incredibly difficult to perform well at all and very fatigued when I try to think things through. How can such a dramatic change in personality and cognition suddenly happen and it just be because I want attention? Is it really just me? Am I alone in these feelings and experiences? Or should I just call up a psycologist and check myself in for a few months or years? __________________________________________________ Do You Yahoo!? Tired of spam? Yahoo! Mail has the best spam protection around http://mail.yahoo.com __________________________________________________ Do You Yahoo!? Tired of spam? Yahoo! Mail has the best spam protection around http://mail.yahoo.com
