about ready to give up

im not giving up. i would like to but im not. Im hoping this new dr will be able to help he is the head of neuroligy at emory university here in atlanta ga. he is supposto be the best around he must be pretty good he is booked up 3 months in advance keeping my fingers crossed .my pharmacist told me to get a lawyer and go after the old dr i dont think that would help all i want is to get better. ive been off the prednisone 3 weeks now still dont feel good. ive tried working my legs out on the exercise bike it makes the back of my calf and knee hurt bad after wards i guess its from all the swelling. i have no balance i do not know why its been ever since i started falling any ideas? if i have my walker or something to hold on to im ok. im scared when taking a shower when i close my eyes standing im afraid im gonna fall.
i did file for ssi last week trying to get in touch with the right person to get my disability papers from work (government job) your right on the short term i just signed up for it last year took effect the 1st of the year the problem was the blood clot the end of last year. the cellulitus was diagnosed 3-2010 so im not sure what is going to happen hopefully good.
even tho im off the prednisone now im having a bad time sleeping like i said in the last post i cant sit or lay for a long time it doesnt help that when i lay on my back i cant breathe wich is either from the cidp or from the back problems they arent sure. but cant stay in the same spot long periods. the only way i can sleep good is if i take 2 lortab wich i dont like to but only take 2 a day usually. thanks for all the input gives me more confidence Dave

thanks everyone i call every week to see if there is a cancellation none yet i can wait less then 2 weeks . my dr is the one who sceduled my appointment. now im going thru insomnia ive been off the prednisone 3 weeks now was sick the first 2 i have no energy at all i really need to get it back as well as normal sleeping habits that stuff really has my body all confused and messed up will be glad when its over . on the brighter side also im getting more feelings in the bottom of my feet and to be honest the muscles in my hands arent as sunk in but i still have no strength or coordination all i can do is hope. as it sits now all my dreams have come to a standstill. ive allways loved working on and riding motorcycles. now not being able to work on them without help and watching them sit in the garage because i cant ride anymore selling them 1 at a time just to keep my head above water . im not feeling sorry for myself just thinking a year ago i was normal now just watching people walk and use their hands really makes appriciate what most people take for granted. i really believe that the prednisone is what messed me up going from walking normally in november to being darn near incapaciated in 4 months. like i said before i was getting around well till the day i fell and it never got any better makes no sense Dave

the only thing they did was the test with muscle stimulation with electrical current thats it the 2nd dr went off the 1st dr tests wich i didnt think was right. believe me when i say if this new dr finds out its something different i will own the old dr’s practice. and yes i really believe the prednisone really messed me up bad, i could walk fine my hands worked fine when they started. about 2.5 months into it i was getting cramps in my legs so bad i had to lean against something till they went away right before i couldnt walk i could only go about 50 feet without stopping because of the cramps. now after the blood clot and the 5 months of my leg leaking .my left leg is so swelled just below the knee i believe i might of really messed it up falling those 3 or 4 times the dr checked it no xrays said it was ok but it hurts to touch . i go back to wound care tomorrow i want to ask them if there is any tests they can do. its so swelled under my knee one day 2 weeks ago a big bruise appeared on my calf and the pressure on my calf its almost hard as a rock sometimes and i cant bend my knee but about 1/4 of the way or above the knee and my calf hit each other and cause pain. i just wish this vertigo would go away so i could walk stright
I dont believe they are going to give me anymore time off from work so it looks like i have to go out on disability. that dr should of realized after 30 ivig treatments when i quit and had not gotten any better hands got worse he would have listened to me i told him back in october what was happining but wouldnt listen. on the brighter side the past week or so i started getting more feeling in my feet where i have the ulcer on my foot is hurting more when i stand on it. this is going to sound a bit weird but with the feeling im getting back almost feels like i keep stepping on something and its stuck to my foot even tho its not Dave

[QUOTE=dine30]I am being weaned off prednizone and havind plasma treatments
how are the plasma treatments going im not sure but thats 1 of my other options. good luck weaning off the prednisone not sure what dose your on but i was on 60mg daily for8 months your in for some rough times ive been off it a month now still have good days and bad hopefully you wont run into the same problems i as i did. my biggest problem with a chair in the shower is the chair i have a tub shower stepping over the side of the tub i need to hold on to the wall to get out think i can manage if i sit the chair in backwards

[QUOTE=Dick S]dave,

regarding the prednisone…

i am off the prednisone now will be a month tomorrow still having some side effects .but i herd could take 6 months for it to go away. i feel like a teenager acne popping up all over my face the skin on my face is so dry its flaking off.im still not sweating like i should there were 3 of us out in the garage today im the only one that wasnt sweating i will be glad when i get my energy back also

hey Sandila can i ask you a few questions about your cellulitus ive allways had swelling in my legs back in december my legs started blistering and left started leaking i mean badly it would leave a wet spot on the floor i bet i lost a pint of water a day from it.was so bad i had to use maxie pads bandages would leak in 15 min i went thru this for 5 months.i go to wound care every 2 weeks they made me start wearing tubeuflex compression socks if i wear them after about 5 hrs my knees up start filing with water and hurt really bad i started falling all of a sudden march 27 out of the blue i have never been the same since i can get around the house but if i go anywhere i have to use the walker.i dont go in any stores unless they have scooters im a rather big guy 240 lbs takes 2 people to get me up i can get up but i realy hurt my feet doing it. i guess im scared and dont want to be embarrased taking the chance walking in stores. my calves get really hard and if i bend my knees more then 1/4 of the way my calf and back of my leg above the knee hit each other and cause pain .my left calf gets hard as a rock from the swelling. my question for you when you say you need a walker what part of you legs seem to be the culprit. mine is my knees its like they dont lock out and i step and they collapse. i know im hurting myself i try to get on the excersize bike often as i can. but im not walking enough wich doesnt help. a friend of mine told me a good thing to do wich i started was sit in an arm chair or computer chain practice standing up do this as many times that your comfortable doing its the best thing you can do to build muscles back up in your legs. Dave

went to the new neuro on wed spent most of the day there . had emg didnt go so well they checked my breathing breathe in ok out 61 percent normal 80-120 had a talk with him he did a check blood work to see if i have some gene . he thinks its heredatary and not cidp he also believes that when the other dr put me on all that prednisone that the diabetis it caused (uncontrolable sugar levels) triggered it . i tend to agree with him. i was fine then it got bad all at once . its gotten a little better since ive been off prednisone i dont take insulin at all anymore and according to what i eat most of the time i dont even need my glimapride. i think if i ever get active again i wont need anything. the problem im having thats driving me crazy i have more feeling in my feet now. i do have a ulcer dr calls it some kind of bunion do i have a small hole in the bottom of my foot about 1/4 inch deep every 2 weeks the dr carves the callus off it. but the problem is pain i tont have the tingling pain its in front of my ankle or should say foot deels like a severe cramp it comes on everyday after 4 between that and the foot pain its almoost enough to make you cry. i take a 300mg gabapentin 2 50mg tramadols it does nothing after an hr or 2 of the agony i take a 7.5 lortab a while later it finally subsides it feels better when i stand on it. alout of nites i have insomnia from it . hurts bad enough it gets tender all the way up to my knees. after i do fall asleep sometimes its 5 in the am when i get up im not worth a darn from the pain killers ect. im not depressed anymore but the dry skin and the acne is terrible i need to walk more to get my streanth back back but i cant my foot will start hurting then thats it for the day. i guess pain is good means the feet are getting more feeling but i cant take this to much more i know these pills are hard on the kidneys especially when 1 of mine only works about 20 percent wish i could find something stronger that would take less of a dosage to kill the pain. im not one to get hooked on pain killers ive been on lortab about 6 months and dont abuse it by no means there were days up to a few weeks ago where i wasnt taking anything

hey everyone. went to the new neuro last week had emg test again i failed it really hurt this time i guess because they had to turn up the voltage so high he must have stuck those pins in my hand 1/2 inch besides the shocks didnt like that feeling at all. the neuro that i went to right before him that immeadiatly sent me to him didnt tell me but he thought i had als but i dont. the dr did some blood test to see if i have some kind of genetic form of neurapathy he said i dont have cidp. he also believes that the prednisone raised my sugar so hi for so long that it triggered it and made it worse wich makes sense i did start getting worse a few months after i started. he talked about plasma treatments but wanted to make sure what it is first .I believe he is pretty sure if he is correct he wants my brother to come with me and get checked out the results should be here this week or next
I have been putting moisturizer cream all over to stop the dry skin its even in my ears ugh. i tried having someone stretch my foot and ankle to try to get rid of the cramps helped a little i tried one of my uncles baclofen works great 1 keeps the cramps in my foot away for a day i still have to take an occasional lortab 7.5 but that foot is messed up in other ways for starters my big toe nail is so bruised and its getting ready to fall off. i also have some kind of bunion that i go every 2 weeks and they carve on it has a deep enough hole that you can stick the head of a q tip in it and it will stick stright out and hold itself pretty nasty.i need to have surgery on it have the bone shaved and something done with my little toe on that foot has a hammertoe I thought i was doing better walked around the house and the garage without holding on to things guess i over did it sunday i was sore so i took it easy i tripped monday morning but was able to get up by myself i tripped again monday in the yard long story. so im back to holding on to things. the dr is going to tell me when the test results come back if i need to file for disability. the one thing i have over most people is i can get disability from work as well as ssi. its really bad right now i have all the creditors calling since ive been out of work for over 3 months all my phones i have the ringers shut off. im finally getting a check in 2 weeks for about 350-450 hrs of sick leave. still waiting to hear on my short term disability also everyone knows the run around you get from the insurance companies thanks everyone for the advise so far will kepp you updated. attached is a few pics of what happens from cellulitus caused bt prednisone Dave

things are getting bad again. ive been off my feet for a week now after falling my back has been hurting really bad my knee been bothering me my right foot is a mess between the cramps my big toe nail is fixing to fall off and the hole in my foot hurts really bad. i really dont know how i am going to get around in a few weeks they are doing surgery on my foot its a tailors bunion they have to break a bone and reset it. if i dont get it done i will always have pain the dr said i will eventually get an infection in the bone and will loose part of my foot. the only good part about being off my feet is the cellulitus has went down alout down 6 mm in my thighs and 5 in the ankles.im really seeing now i have hardly any muscles in my calf. i have really noticed im loosing alout in my hands now. im afraid those few weeks im going to be off my feet thats going to be it. and i wont be able to walk anymore. i have been trying not to get depressed about it but there is alout on my plate. between waiting for a paycheck for 4 months after they told me would take 15 days for my sick time. i went out on 3-28 can you believe i still havnt herd from my short term disability i just dont think they care . not knowing if i could ever go back to work i realize now i wont be going back if i go out on disability from work i will loose my insurance so ive been holding off as long as i can. what i will get from work disability wont even pay half my house payment. i have signed up for ssi disability but it could be a year before i get it. i cant sell the place it was in my brothers name before he died got everything done and in my name had to pay 20k just to get it financeable that was 2 weeks before i got disabled. have all the ringers shut off i get 40 calls a day from creditors . so if i was depressed i have good reason. the part that really gets me is a year ago i was fine now just watching people walking and enjoying themselves kills me they just have no idea how lucky they are

wanted to thank everyone for their comments the results came back i do not have cidp i have charcot marie tooth disease their is no cure or treatments for it. just have to live with the fact i am never going to get any better . i believe he called it cmt1a . he said what made it get worse so fast was the prednisone you have to keep your sugar low mine was so out of control even with the 2 types of insulin and oral meds. i have noticed my sight is not what it should be either. I called a lawyer to see if i could do anything about the wrong diagnosis and treatments they cant prove anything since its a progressive disease and cant prove that it put it in overdrive i am hobbling around the house ok was hoping after the prednisone wore off i would do a little better but ive been off it for 4 months now i as starting to sweat again

they did an emg test at the first dr i went to he pumped me full ivig treatments 5 the 1st month then put me on prednisone after the 1st pill sugar went to 500 my dr tried to talk to him but he wouldnt talk to her said it was ok. she sent me to another he went by what the first dr said never did any tests at all he cut it back to 3 times a month wanted me on 60 mg prednisone a day. went to the encronoligest they put me on 2 types of insulin plus oral meds they still couldnt keep it under 300-350 i couldnt eat anything when the pill wore off everyday my sugar would drop like a rock 40-60 so i was either up or down takes its toll on you. i felt great the first week i was on prednisone had so much energybut as my immune system went down i was feeling worse and worse all the good side effects were kicking in . after 3 months of 3 day ivig he kept telling me i was doing better and better i knew i was not i hurt so bad i didnt walk anymore then i needed to then he cut back to 2 days of the ivig and put me on 1000mg of cell cept besides the prednisone my body couldnt take it one day i started falling several times a day called the dr thought i had a stroke or something he took 2 days to call me back i ended up in the er the dr told me there my body was shutting down and told me to get off the prednisone so i did started weaning off it. I made an appointment with another dr the first time he referred me to the best dr in the field he didnt tell me but he thought i had als. after waiting 3 months to get in he did a blood test takes about 3 weeks for the results but i tested positive for the mutating gene also found out some people in my family have it i did not know they were my moms cousins that i did not know. the prednisone made my cmt go into over drive from the elevated sugar levels. some symptoms i had years before the numbness were i couldnt lay on my back couldnt breathe the drs told me it was astma ha ha but i have back curvature like scoliosis . i went through all kinds of tests the lung dr told me it was sleep apnea another haha . i dont have luck with drs. If you suspect that you might have cmt have them do a blood test. from what i have seen and read i think i would rather have cidp some times treatments help and you allways have a chance of gettingt better Its rough hearing from your dr there is nothing he can do for you and there are no treatments your going to have to learn to live with it and he wants me to join the mda. i am not ready to do that im not giving up this is not a termenel disease and slow progressing al tho i can get around the house ok without a walker ive lost 40 lbs and im going to keep going . My hands are not worth a darn anymore cant open a ziplock bag or put a plate in the dishwasher because i have no streangth in my thumbs but im learning my limits on what i can do. the muscle cramps in my ankle and foot are enough to make you cry but take a pain pill and muscle relaxer and it goes away. My attitude is getting better everyday after almost 5 months off prednisone now i am starting to feel like my old self again guess the side effects are starting to wear off i also started sweating again

you are 1 of the lucky ones adleast you have hope. actually my symptoms started in my 20s when i laid on my back and the curvature was in my teens. like i said i was fine besides the breathing about 2 years ago i noticed tingling in my feet didnt think anything of it was walking fine infact i was walking and acting normally til about 3 months after i started the treatments you wouldnt think .t would go down hill so quickly the day i started falling i was at work that was 3-26 of this year. now im disabled but thank god it has gotten a little better since i got off the steroids . best of luck to you keep at it the results are worth it. i know its a little late for me but if just 1 person benefits from my story it was worth it. Dave

it will take a little time for the effects of the prednisone to go away i dont know how long you have been on it but keep your head up when you get off it completely your in for a rough few months your emotions are going to go on a wild ride but you will be ok i was sick for a few weeks did not feel like doing anything just try not to think about it that way you wont be upset but everyone is different hopefully you will make out better then i did. the weakness and trembles never went away for me .the trembles you will have to learn to live with. i never thought much about it. but i notice it when im in bed trying to go to sleep lots of twitching going on. It is so nice when i get up now not to have the cramping in the legs like i had on prednisone. when my body was on full doses i could only walk about 50 feet then i would have to stop and stand there in pain .was so bad i started pushing a shopping cart when ever i went into a store then my knees started giving out a bad feeling when you fall and cant get up. you dont want to go in public places because you are afraid of falling. I bought a mobility scooter makes things much easier when i have to go long distances when i use the walker for long distances i pay for it for days afterwards tired and really sore. My walk is pretty messed up i devoloped a taylors bunion from it got a deformity in my foot had a foot ulcer that wouldnt go away i had to have surgery a few months back to brake a bone in my foot to fix it so the ulcer would heal works good now if i didnt have the surgery they said there was a good possibility the bone would get infected and i would start loosing parts of my foot i didnt want that