Hi, Glad I found this site maybe reading info on here and input from all you who have been going through this neuro garbage might be able to help.
My name is Jo and I am the "mama of Goo" Goo's name is actually Kyle. Don't know what I would have done the past 4 months 11 days. It actually started before then since Jan 1 2010 my right leg has been doing a combination of tremoring, jerking, cramping and giving out. I got a walker to keep from falling down anymore so far so good.
Looking back through all that has gone on it seems that things started going crazy after they found a benign (Thank God) tumor in my stomach, not abdomin, they took aout an area of the back wall of it about 3 inches by 1.5 inches. Right after they sent my family out of the room to finish getting me prepped and had started the pre op meds the anesthesiologist came in and asked if it would be okay to do an epidural pain pca pump for post op pain. I told him that as long as I got the "I dont care" drug before he started I didnt care what he did. The nurse said "you already have it." They asked me to sit on the side of the bed and lean forward.. that was the last I remember. When i came back from recovery I actually moved myself from the gurney to the room bed. I thought that the epidural pca was the best thing next to sliced bread.
Moving forward I was having problems with my digestive tract and my PCP thought that it was due to the surgery. I was noticing some minor twitches in my hamstring and chocked them up to left overs from a car wreck in which the hamsting tendon below my right knee was crushed when my leg broke out the dash. Also, I was experiencing pressure building up in my back then would feel like someone hits me across back and that is when the twitching would start. My PCP sent me to Omaha NE to the Med Center to have an ERCP to see if they could find out what was going on. They decided to try and stretch my common bile duct with a stint...well the Good Lord gave me what he wanted me to have and they could not get a stint in it. But I did end up with pancreatitis out of it. The pain from the pancreatitis is very very similar to what I had been experiencing since surgery. The twitching started in my quads, then my hamstring would cramp from my ankle to my hip causing my knee to give out and down I would go. i would have short periods where my quads and hamsting would just jerk shaking my whole body and at times when I would walk(which I did avidly, 3-5 miles a day) I my right foot would act like it didnt want to just come along but I would have to think to move it. In Jan of this year I noticed that I was taking many more pain pills as the pill would last over a year and would have to throw them away and get new. Kyle brought me one on Jan 18th as my leg had cramped up and I had fallen. He said "do you realize you only have 2 left" I had just gotten them filled in Oct. So I got on the phone and called the ortho that had taken care of me after my wreck. He did xrays of my legs and thought that it was patella tendonitis and sent me to PT. After a week of PT my leg was shaking sooo bad the PT said he had talked to the ortho and that PT was seeming to make things worse. Ortho sent me back to my PCP saying he thought it was "sever restless leg sendrome" PCP started me on 0.125 mg of mirapex bid. She made referral to neuro...since then I have gone from half of the smallest doee of mirapex to currently takeing 1.5mg tid plus 500mg xr keppra. They have tried dilantin, lyrica (allergic to that one) and the carbatrol was a nightmare, my leg was totally uncontrolable constantly it was just jerking all over the place. I am also now on 3 different BP meds because the pain has raised my BP up to where they are scared I'm going to stroke out (214/168 is about the usualy when leg cramps up) if my leg gets to jerking bad enough that foot bounces on the floor I have Skelaxin 800mg to take qid, still have the tramadol 50mg for pain, and most recently if it cramps and twists around my foot so that it is actually on the distal edge instead of the sole of my foot then I take 10mg of valium. One thing I have noticed is that all these drugs say "can cause depression, suicide, etc" heck are they sure it is the pills or is it just because you cannot get a straight answer out of anyone. I know it is NOT MS, Lou Gehrig's disease, nor is it MD or PD. I went to the med center in omaha on May 12th and saw the Movement disorder neurologist associate professor and he ran over 2000.00 in more blood tests and according to the local docs they have not gotten any results from him. I went in to see my PCP this past monday and she wanted to know what he had said. So I quoted him. "Everyone knows that all movement of the body comes from the brain, if they did an lumbar and pelvic mri's and found nothing why have you not had a thorasic and cranial mri?".. My only response was "they didnt order them and I cant" So she did get them order and they were done on Wed of this week. I really want my life back, I hate taking pills, I hate hurting and jerking and scaring people when they think I'm going to fall over. I have actually challenged some to a right legged hokey pokey contest... and I win hands down. I actually attached my pedometer to my leg and one day in 2 hours it went 11.1 miles and I was sitting down. My leg goes almost 24/7 with rare calm times. I did go see a neurological PT along the way and he said that it appeared that my quads and hamstring are relazing and contracting at the same time instead of opposite each other so he tried electro conversion on it but it didnt work. My leg has a mind of its own and i cant figure out how to get it to do what I want instead of what it wants to do.
If anyone has any idea what might be going on or if you are suffering with this craziness too Please let me know.
Sorry didnt mean to write a book on here.