blackwolf

thanks Mary and everyone else!! the MRI was tough, very painful, but nice doc left me some meds(shot for test and script for home). hope to have test results tomorrow afternoon. all i know right now is that i have fluid build up in in spinal column putting pressure on the spine, causing alot of my pain, weak legs, headaches and buring chest pain. still don't know about the spinal tap, will also learn about that tomorrw. thank you everyone for all your support and i will let you know what the tests results are. hugs and blessings, blackwolf

thanks everyone!!! my doc has said for best results i need to be in a regular (enclosed) mri machine. and that is ok. my pain is just under control right now. i really am unhappy with the stuff they put my head in at the mri as i need to be in a certain position and hold very still. as someone larger, i have to put my hands above my head and i will probable smash my shoulders up. at this point i am ready for it as i have to find out what is up and what to do about it. i have daily headaches that are starting to get worse and nothing really seems to help. again, thank you EVERYONE!! your input has really helped. i will be out of touch for a few days, but i will be in touch as soon as the test(s) is over and again when the results are in. blessings, blackwolf

on tuesday i will be having a follow up mri to see what is putting pressure on my spine(after 2+ years of complaining, i found a doc who listened and is treating). on my last mri (thursday nite)they found an area in the middle of my back where there is something putting pressure on my spine, they don't know what, only that i is compressing my spine and not allowing fluid past like it should. i have been told that i will be having an iv contrast given to me about an hour before the mri. i do know that it isn't an iodine based dye, but i don't really know what it is, i have been forworned that it might have some "mild" sideffects to it and my doc has ordered some drugs to help me if i do have trouble. what i am wondering is, has anyone had trouble with contrast/dyes and if you did what happened. i will not back out of this as i really need this treated as the pain and walking issues are being caused by it are really cutting into my life, and i am more than ready to deal with the results of the test(possible spinal tap afterward if the doc thinks i need it) but not sure how to deal with the unknown of the contrast. a little scary on my part, but would love your advise/input....mabey a prayer or too. ok. i am scared!!! thanks for reading blackwolf

keep going and i'll keep praying. blackwolf

mixed blessings both good and bad, i have passed that point and moved on, as best as i can and i hope you do to. how do now spend your free time, can you expand on it, do other things? i crochet, quilt and sew to pass the time. now i'm getting into jewerly. all my best to you and your family. blackwolf

all my best, blackwolf

i pray for everyone there and best of luck in finding your friends. blackwolf

gena-yep, had tons of tests, eb(mono), lyme, lupus, blah blah blah..most testing was normal to inconclusive. and yes, the neurontin was stopped for about 2 weeks, my pain sored corina and emily, thanks for the support. i will probably not be back till after the appoiintment. it is on tuesday at 2:45. so i willcheck in afterward. thanks again everyone, cyber hugs all around. blackwolf

dear roselover, ultram didn't work for me, most of the time i didn't have any relief from it. but i do know some people who get a great deal of help from it. best of luck to us all. blackwolf

thanks poohbear and sunfish, right now my suport is minimal and i'm having so much pain that is uncontroled. going swimming for the last time at the public pools, i'm sure it will be fun. i am still concidering joining a club to be able to swimm all thru the winter, but the least expencive is still $45 a month just for me. am i being selfish in just doing myself? got to go, thanks again, blackwolf

i am going to see a new doc. and i'm NERVOUS! and a little scared he will he call me nuts. he is supposed to be an "expert" in treating the burning sensations i have in my neck, back, ribs, and legs. he is well thought of by someone in the support group i belong to, but.. i'm still nervous does anyone have this kind of chronic pain, even if only occasionally. i am currently using neurontin at about 300mgs 4 times a day and will be switching to 400mgs 3 times a day soon, mabey 4 times a day? i also use lidodrm patches(lidocaine 5%) that i can wear for up to 12 hours, three at a time, but i feel only a slight amount of relief. i am also useing trazadone(sp?) and ativan to try to help me sleep, but the pain just keeps me up. and even now i am having a flare up. i know one is coming because i get a sore throat and lymphs under my arms get so sore. i also know that i have a rather high sed rate of 50(last test in may). most of the tests as to why i am having so much trouble come back "inconclusive" and i am stuck here waiting for another doc. thanks for any replies, blackwolf

so sorry to hear of all your troubles. still, happy to hear from you. miss you, my prayers and thoughts to you and your family. i hope Marissa can keep dancing and i hope you find something to help. blessings, blackwolf ps. be sure to get enough rest yourself.

Bless you Em. i would if i could, so i am glad to see someone who can keep this place of "safety" for those of us who depend on it so much. bless all of you for all that you do. blackwolf

sorry i missed these last few comments, i have been busy and kinda tired. we have had a round of doctor apps, and then getting ready for school. i have been so tired and wear out fast. i am seeing a nuero doc on the 30th. i really hope that goes good. he specializes in pain mgt. and i am also trying to get in with a neuro that knows alot about POTS(new to area) but he is really backed up, ie i might have to wait till nov or dec to get in. still working on it. the walker has been helpful and nice to have, thou i still use my cane when i can. thanks for all of your support, blackwolf

thank you for the update and i will continue to keep all of you in my prayers. blackwolf

i take 2.5 to 5mgs depending on what i am doing. i take the 2.5 as close as every hour or 5 mgs as close as every 2 hours. i also stop about 3 hours before bed and try not to take any more than 45mgs a day as i get the "creepy crawlies". best of luck blackwolf

thanks corina, it is just a fancy walker. it has 4 wheels, a seat that folds up and down and hand brakes that i can use when going down hills and locks for when i need to sit down. it is just wide enough for me to sit down but comfortable to use when i need it and so nice to have. it can fold up, sides come in and it has a basket i can use for my purse. i am even thinking of adding some elasstic that i can use to keep a water bottle in place. still working on it. good luck on the typing, i would say do as much as you can so you don't lose the ability. my prayers, blackwolf

sallyann, you don't have to elevate the whole bed, just your head to start with. try a few extra pillows or a small wedge pillow and work your way up to a higher wedge if you need to. those wedge pillows can be picked up at most medical supply stores and if you are really lucky, sometimes Walgreens. if you want to raise the whole bed, try starting with a 2x4 under the top part of the frame, and add them as you need to. be sure to nail them together and don't use more than 3. if you have a decrative headboard, it may need to be removed or ajdusted in order for the board(s) to fit. as to being sick so much, what have you tried. i can use only compazine and vestril(sp?). everything else i have tried has made me worse, either feel really bad(spinning diziness and flaoting) to hives and more vomiting. even zofran. go figure. all my best to you, blackwolf

1. NEVER worry about "whining", we all do it one point or another. 2. have you tried elevating your head? i haven't layed down for years, with the exception of the odd test that absolutly requires it(ie. mri's, ct's, etc). i currently sleep at about 60 degrees and have actually turned those "wedge" pillows upright, and use a few regular pillows on top of the wedge. it is the only way for me to sleep. i started out just using a few extra pillows, then i got a low wedge pillow and worked my way up higher as the years went on. i have even found a recliner not quite right and have actually found my high armed couch the only really comfortable place for me. go figure. you might also want to try just laying down slowly, ie. sit down with your feet up, slowly lay farther and farther back. best of luck, blackwolf

cog symptoms go away? i wish. as to trouble typing, has anyone, besides me, used the Dragon Naturally Speaking Program(that is what it is called here in the US). you talk and it types. it took some getting used to and when i can't talk i have some trouble with it, but i can work with it for a long time. they even have programs for differnet professions. i try to type just to keep my fingers going, but... take care, blackwolf

thanks everyone!! funny isn't it, i came here to tell everyone how glad i am to have it. it is already helping, i stand straighter and walk in a much straighter line. as to the model, it is one of the less expensive models with 4 wheels, hand breaks, and a basket for the bottom. it is a nice cherry red and everything else is black. the seat folds up and down for use, and the "backrest" is cloth, which i plan to embroider and/or cross stitch(evie's idea sounds neat) and i am also thinking of seat covers that i can slip off and on(velcro or snaps) and mabey some little "bags" for the basket and to hang from the sides. mabey some beads and paint, crazy quilting? a sewing we will go a sewing we will go.... thank you everyone!!!! blackwolf

i'm walking that line of being happy and sad today. we got my walker one side of me is so happy to get the help of the walker, and one side of me is so sad for have the need to get one. my sence of balance is shot, has been for a long time. i also have been getting weak faster than ever. and i'm not so sure how well my left side is really doing. i see a neuro doc at the end of the month, i hope ther are some answers there as i have just about nothing left. the walker i got was one of those really nice ones with 4 wheels, hand breaks and a seat. it is just what i need right now. but i can't really admit i need it so much. very depressing blackwolf

great job, i hope you continue to have the same luck thru the next year of classes. blackwolf

i have also learned biofeedback. i learned it originally for migrains i had as a teenager, but use it now to deal with my general pain and sleep issues. i learned it in a pain clinic back when i lived in Iowa. i was placed in a dark room, in a recliner, with a choice of pictures, or my own imagination. then i was given a choice of music or silence. i was hooked up to a pulse/ox. monitor and was told to try to relax and get the machine to read within a certain area. these days, i work on "point relaxation". i pick certain areas on my body and work on relaxing them and try to keep them relaxed as i work to get my whole body relaxed. reciently, this hasn't helped as much as i would like, but i know that i do get some benifits from it. best of luck, and i would give it a try, if you can get it payed for. blackwolf

dear evie, welcome. i'm afraid that i still have trouble swallowing, but i am working on the bladder trouble before more follow up on the swallowing. and yes, i often have that "i'm goin' to throw up, but it hasn't happened yet" feeling, even gagging while trying to get meds down. i use milk to help get pills down that are more stubbron than others. i use compazine, 10 mgs, as needed to help with that feeling, most of the the time it works, but every once in awhile, i do get sick, and the only option then, is a trip to the er ivs and iv meds, stop the gagging and vomiting and "break the cycle" and let me rest and recover. then i'm usually "fine" for a 4-8 weeks. best of luck, blackwolf