[mamagoo]

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.

[Darlene]

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help.

There are great number of fellow members here to assist as possible. My thoughts and prayers are with you.

Check out the following treads they will be someone there to assist you:

http://neurotalk.psychcentral.com/forum21.html

http://neurotalk.psychcentral.com/forum26.html

Again welcome, looking forward to seeing you around.

Darlene

[MelodyL]

Hi. Welcome to Neurotalks!!

Wow, you have certainly been through it all, haven't you. Hopefully,the most recent test results will reveal SOMETHING!!!

I can only say that my prayers are with you. Please keep posting and let us know what the latest test results are.

Someone will come along and give you more information.

I pray that your leg "calms down".

It must be so distracting for you.

You are in my prayers.

Melody

[mamagoo]

thanks for the warm welcome.
You could say my leg is distracting but it can be entertaining. My son's best friend (more like a brother) and as I refer to him as my "gooson" has a little boy (my Grandgooson) he is going on 2 and he loves going for a pony ride on my leg LOL. I shed tears of flustration and pain from time to time but mostly I just ignore it. Coming up with new means of employment if I lose my job from not being able to get there because of it cramping up and having to take the Valium is fun too. One of my best friends at work suggested I go to work in a winery stomping grapes, another become a professional hokey pokey dancer. You have to laugh at it and after bringing home the walker, which I got cheap from Wallgreens here it was on sale and it is BRIGHT RED, 40.00 less than the plain silver ones. If something is going to live in the house it has to have a name..so had a vote out to my firends to come up with names. "Johnny Walker Red" won, you may have heard of his cousins Jim Beam and Jack!! After the name was picked finally my son came up with the idea we should have put a big star on the front of and put Texas on one of the front legs and Ranger on the other (Walker Texas Ranger). Told him wow what woman wouldnt want to be helped around by Chuck Norris LOl.
An idea that some may want to copy is that he took one of his National Guard backpacks undid the the waist strap and put it on the front of the walker. I use the bottom pocket for my meds, the front pocket is now my purse, one side has a big long pocket great for carrying a water bottle and then the two on the other for smaller stuff. The big main area is great for shopping and it even has a cellphone case on the shoulder strap.

[mamagoo]

the mri's of my thorasic spine and head are normal... now that is funny they said my brain was normal, guess that disproves a bunch of myths LOl
What I don't understand is how they can be "normal" but I have pressure build up in my lumbar area and then the dam breaks loose and my right leg goes crazy!!!
yesterday was a really bad day and since I have gotten my 1st written warning for being gone from work I had to go. I broke down and took a skelaxtin at 0800 it helped releave the cramping and the twisting of my foot but had 4 people ask me if I was "high".. told them "NO just medicated"
on tues got the above mri results and was told that need to have c spine mri. they would schedule it and call back. I asked about the labs from movement disorder doc's visit and was told again "no we have not gotten them" So while waiting to get word on when mri would be I called Omaha, they had sent out via mail and faxed the result back the middle of May. Told them that clinic says they never got them so they faxed them again. Friday afternoon, after my chitty day I called to see when mri was only to find out it was on Thursday...nice of them to let me know when I was to be there.
Lab work from Omaha was basically normal but what was strange was that all the results having to do with my red blood cells were all HIGH. Heck wasnt that long ago that they were testing me because they were all LOW here and almost had to have a transfusion.
really beginning to wonder if should get ahold of MD doctor and have him get the mri films and have someone else look at them..
if anyone has any idea where to turn to next please please let me know. If I miss 3 days in the next 6 months I get my final warning then any absense will be termination... I cant lose my job not only the paycheck but the insurance and support group I have there.

[mamagoo]

well after yesterday I am down to 2.5 days. HR found an extra half day for me from the past that had been put in as a whole instead of a half. Was going to try to go in and take care of a couple things then leave but I couldnt put on a shoe as my foot was twisted so much that was actually the outside of the top of my foot touching the floor, not confirmed by doctor but looks like I have a sprained ankle now. It felt like my foot was going to snap off the second go round yesterday after woke from taking the valium to get it uncramped when I got up. i honestly dont know how much more of this crap between missing work, the insurance saying one thing then another and this damn leg. Wish I could have convinced Dr Crockett to just cut the thing off like a chicken leg when your getting ready to fry chicken.

[MelodyL]

Originally Posted by mamagoo

well after yesterday I am down to 2.5 days. HR found an extra half day for me from the past that had been put in as a whole instead of a half. Was going to try to go in and take care of a couple things then leave but I couldnt put on a shoe as my foot was twisted so much that was actually the outside of the top of my foot touching the floor, not confirmed by doctor but looks like I have a sprained ankle now. It felt like my foot was going to snap off the second go round yesterday after woke from taking the valium to get it uncramped when I got up. i honestly dont know how much more of this crap between missing work, the insurance saying one thing then another and this damn leg. Wish I could have convinced Dr Crockett to just cut the thing off like a chicken leg when your getting ready to fry chicken.

I'll tell you one thing. You have a better sense of humor than anyone I know who is suffering the way you are.

You look at stuff and you find humor in it. I wish all of us did that. I try and make the best of a bad situation, but you are actually funny.

Anyway, I hope things work out for you, and your leg stops cramping.

Take care

Melody