Hi Everybody, I don't write much but I read everything. Unfortunately, I don't have answers to your many questions as some of you do, or I would put it my two cents, trust me.....
I have a problem and need a sounding board. It goes like this: I felt I was getting worse, and having decided some time ago for the hundred time that I was not going to see doctors anymore, I caved miserably and saw my neuro. She ordered two MRIs, thoracic, brain, and extensive lab work. When I saw her again on March 27 she greeted me with good news, she shouted. Nothing much had changed since the previous MRIs. She made a grand gesture, raising her arms and making this big round circle, explaining that there is much within this TM thingy that could cover a multiple of stuff (I'm paraphrasing). Like an attack of MS in the past, maybe Lupus. Well, I said, did an attack of MS in the past, Lupus, or whatever, not show in all those tests? Not really she said, it doesn't always. I'm wasting my time seeing these doctors crossed my mind. Doctor, I said, had MS or Lupus come up positive, there isn't much we could do about it, is there? That's right, she said, but I would like a second opinion and recommended I call this rhumatologist, which I did. I saw him on March 12. One of his patients raved about him. "Great doctor, so nice, does a lot of cycling". I often wonder why people think that a doctor is great because he is "so nice". But I digress. A tall man in great shape walked in, introduced himself, and silently spent like it seemed forever on the computer, analazing the info the neuro had faxed to him, totally ignoring me. They never do that on their time like teachers do when checking student's homework. Did you ever notice that? But I digress again. And then he turned around and asked me what's going on. I told my story. Woke up one morning about five years ago, numb left leg. Couldn't shake it off. Saw a neuro. Diagnosed Peripheral Neuropathy. I could live with that even though I noticed something happening to my balance. Eventually things went bad when an MRI showed a lesion at T11-12 and I started a regimen of cytoxan and Prednisone to clear the inflammation. TM walked into my life. Ablation 2 years ago, AVM surgery shortly after. I told him that fatigue was always a ten and that my eyesight had become a blurry problem, pain here, pain there, and so on and so forth.............. He checked me over. A somewhat severe man who never mentioned once the dreaded "TM" word. It felt like he was evaluating me for something else. Exercise everyday, he said, get a bike machine handing me the printout of a what to do list that he probably gives all his patients, and 2 prescriptions. One for Neurontin that I have been taking like a yoyo. That's when I decided that with my decision of forgetting about doctors, I would also forget about meds. That was my brilliant decision: and que sera, sera!. Of course, that didn't last very long. I take Neurontin 600mg 3/day, folic acid 1mg, Fasomax, period. Not much but I can't handle the side effects of all this other junk they want me to take. The second prescription if for Levothyroxine Sodium 50mg, one a day, and to see him in 2 months. When I asked him if he thought I should have physical therapy for my neck, shoulder, and upper back discomfort, he said NO. Too rough. The goal of a movement routine is to relax and fluidly move the muscles, not to stretch them to the point of pain. Heat should probably be applied prior to stretching (how do you do that?). Muscle pain and non inflammatory point pain responds best to heat (no ice). How I long for a bath in a hot tub, a thing of the past, can't get up. Anyway, this Levowhatever prescription is what this writing is all about: He said that the blood work showed borderline "autoimmune thyroid" and explained what is was. I wondered why the neuro never mentioned it. Well, he said, because it's so borderline, she didn't think it was worth bothering. I don't really want to take it if it's so borderline. I really don't. I googled symptoms of autoimmune diseases: - Insomnia (I sleep like a lot) - Irritability (not really, unless I'm irritated) - nervousness (no, except at appropriate times) - weight loss (I WISH!) - weak leg muscles (duh, I have TM) and so on.............. If you took the time to read this without falling asleep, what would you do if you were me? To take or not to take? Incidentally, the day following my visit to this last doctor, I fell on my back on the kitchen floor attempting to move a chair. I tripped and lost my balance. I guess God was busy elsewhere as he was when you, Frank, also tripped. I was painfully sore all over the following two days. Could hardly move. I couldn't get up. Dragged myself to the bedroom where I thought I could push up holding on to the bed post. I guess I was too sore and exhausted from the dragging and the fall. I just sat on the floor with throbbing legs, grabbed the phone on the night stand and called my daugher who was probably driving home from work. Didn't answer cell or home phone. Why is her cell phone never on? Waited a half hour killing time by phoning my cousin in Los Angeles. Found out later that my daughter was having dinner with friends after work, sipping champagne while I was on the floor waiting for her. After a while, I felt rested enough to attempt the bed post climb, and with every fiber in my poor body pushing to its limit, I got up. I now have this huge, georgous red/purplish bruise on my upper arm. I'm just thankful that I didn't break anything (I hope). How are you doing Frank? Did you get X-rays? Don't think that I'm not aware that I don't have it as bad as so many of you have. I wish you well. Comments? Thanks! R
