about ready to give up
AnonymousJune 9, 2010 at 9:01 pm
was diagnosed with cidp last aug could walk fine then .didnt really notice a little tingling in my hands once in a while .they did the electric stimulation in my hands and legs said i had no reflexes. they started me on ivig treatments 5 times a week each month. after the first month no difference in feelings. the dr put me on 60 mg prednisone allready being a type 2 diabetic of coarse suger went to 500 i called his office the nurse checked with the dr he told her it would be ok. i flipped called my referring dr she called him he wouldnt talk to her she switched drs .The new dr wanted me to stay on the prednisone but only wanted me to do the ivig 3 says a month needless to say i started insulin. by Dec there was no difference i was missing work from the cramps ect. used all my sick leave up over 200 hrs was having a rougher time walking because of the cramps my legs and hand muscles were wasting. right before christmas my legs were so swelled they started leaking water talked to him about cutting down on the prednisone said i would be ok. 2 days after christmas i ended up in the hospital with infected leg with a blood clot after the lovinox and being on cumidin he still wouldnt take me off even tho i was getting weaker and weaker. by feb i was down to 2x a month legs the size of a house leaking about a qt a day no lie.i lost 40 lbs i couldnt take it any more started weaning myself down slowly towards the end of march the swelling in my neck and vertigo was really getting bad.my left knee started collapsing all of a sudden at work 1 day fell 2x knee split wide open i knew then i was going to be out of work for a while i was in so much pain by monday i called the dr asked what i needed to do i was scared with my leg leaking the way it was and all the pain he never called back went to the er they gave me something for the pain had mri done of my upper and lower back i have degenerative disc deise with old fractures and bulging discs . He called back 2 days later asked me if i needed to come in. i fired him after i fell i cant walk without holding on to things now use a walker. by may i ended up back in the hospital with a bad
infection where it was leaking was in the hospital a week as soon as i got less then 10mg prednisone the leaking stopped. im waiting to get into a new dr that takes 3 months to get an appointment june 29th the bad part is i was supposto of gotten paid from work but didnt i filed for short term disability but because of the blood clot in dec doesnt look like they are going to pay pre existing cond. im due back to work on july 1st there is no way i can do it my only choice is disability im afraid im going to loose my insurance before i get disability from work or ssi
AnonymousJune 9, 2010 at 11:23 pm
Dave reading stories like yours make me so angry. It emphasizes that the patient has to have an advocate every step of the way. Putting you on high doses of Prednisone when you were already Type 2 diabetic was a questionable call in my opinion. What is with these neurologists? Even if there were no other alternatives (which there are), he should have had you on pulse steroids(IV steroids) as the side effects are less. So then you get cellulitis in your legs and he still doesn’t think there is a problem! You were clearly showing signs of infection which you would be prone to because of the prednisone, and the next neurologist still wants you to stay on the prednisone. It is all so disgusting because of the out and out negligence of those doctors. They should be well versed in what happens to a Type 2 diabetic on steroids i.e. elevated blood sugar, increased risk of infection, cataracts, osteoporosis etc. It makes me sad that you had to go through all of this and in effect the treatment has caused multiple problems for you. I hope that the next neurologist is a good one Dave. You sure have been put through the mill. Stay on the forum, and let us know how you are doing.
AnonymousJune 9, 2010 at 11:36 pm
I am new to the forum and don’t have much helpful advice to give you. You are going through a lot but please don’t give up.
After reading others postings, someone suggested Duke University and Chicago for having outstanding doctors familiar with GBS. Another person posted the positive results they got with accupuncture. Stay on the forum and I am sure others will reply with more helpful information. I hope things turn around for you.
AnonymousJune 10, 2010 at 9:24 am
You have been through a lot, but please hang in there. I too have been very frustrated by doctors, don’t even get me going. One doctor I saw did not call me back for 2 weeks! I was dismissed from the ER when I should have been admitted to the hospital. Another neuro patted me on the back after I lost my reflexes and said come back in 2 weeks! And I still keep going to doctors to try to figure out why I am still having problems and I want my life back…..I empathize with you and I know it is a daily struggle, but you can’t give up. Do you have family and friends that you can lean on? A therapist? Wishing you luck….
AnonymousJune 10, 2010 at 9:27 am
Dave I am so sorry you had to go through all of this. it makes me sick that these neuros claim to know how to treat CIDP but in fact they dont have a clue.
What state do you live in?
Just wondering cuz if you live close to Michigan I was going to suggest dr Richard Lewis. great neuro he specializes in CIDP.
If you want to know more about my sons journey look up threads on ” updates on Ryan” he is 21 yrs old and was in a wheelchair within 4 months of being dx. he was paralyzed and tried all the treatments you did. none of them really worked. prednisone helped at first but that was short lived. chemo (cytoxan) is the treatment that worked for Ryan. he is walking now.
I hope you find a good nuero.
AnonymousJune 10, 2010 at 11:41 am
Whew, it’s tough to read a story such as yours. Hard to say what’s most important-
1. Fight your company, fight the insurance. Use every avenue of Appeal. Of course, they are counting on you to give up. Don’t believe a word ‘they’ tell you. Pre-existing? What does that mean? You were born with it, you had it when you fell? So many technicalities. Enlist the aid of your State Health Insurance Department.
2. Obtain a copy of your Company’s Health Plan Documents. Not the Summary, the whole deal. Find the proper ways to file written appeals.
3. In some cases, maybe most, once your short term disability (STD) is used up, you would go on Long term disability (LTD) and be required to file for SS disability anyway.
4. Refer to the GBS-CIDP web site or call them and get a referral to a ‘preferred’ provider.
Think about the two frogs who happened to jump into a pail of milk. Both frogs swam and swam. Eventually one frog gave up. He drowned. The second frog kept swimming saying over and over, “I won’t give up…” Guess what, the milk curdled, the frog hopped out!
Best wishes to you.
June 10, 2010 at 11:53 am
Dave, Laurel is “spot on”. I hope you take her sage wisdom to hear.
I agree with Yuehan, don’t give up. I too add my best wishes for you (and I’ll pray for you as well).
AnonymousJune 11, 2010 at 12:41 pm
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
June 11, 2010 at 2:11 pm
I’m so glad to hear from you and that you have your strong fighting spirit back.
Stay on this forum and ask as many questions as you want. Also let us know what’s going on. There are so many wonderful, knowledgeable people here who are ready to help you.
Sometime all it takes is one good idea.
Stay tuned and know that I am wishing you the best and am praying to beat the band. Prayers can work small miracles and sometime large miracles and I know others are praying and sending forth their positive energies as well.
Granted, you shouldn’t have to go through this but when you do your courage and strength will pay off and you will be able to come back and help others.
You have gotten some good suggestions and advice so far and there will be more to come.
AnonymousJune 11, 2010 at 2:16 pm
Have your regular dr call the new neuro at Emory to get you in sooner. People get in MUCH faster when their dr calls!
Waiting 3 months is not a good idea, especially if you are having trouble breathing!
You can also call the new neuro at Emory’s office & ask to be put on the “cancellation list”. That means if someone calls & cancels their appointment the office will call & you can take that time slot.
June 11, 2010 at 2:20 pm
I forgot to suggest that you might want get a chair for the shower. You might find one on the net and sometimes you can find then in magazines that advertise home and medical supplies or you could call a local medical supplies store and see if one could be delivered or picked up by you.
The sooner you get the right treatment the sooner you will get stronger. It’s important to treat the nerves as quickly as possible to prevent irrepairable damage.
AnonymousJune 13, 2010 at 8:03 am
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
AnonymousJune 14, 2010 at 11:22 am
I was just wondering how you were dx with CIDP? Did they do a lumber puncture/spinal tap & did it show elevated protein levels? Did they do a sural nerve biopsy on your ankle to show the “onion bulb” destruction? Because if the dx of CIDP is correct, then prednisone should have given you some strength back, not messed you up. It was wrong to give that amount of steroids to a diabetic, however. I believe if you are worse since you took them, it is probably just the normal progression of the illness. And IVIG doesn’t work for everyone, if I remember right, it works for like 60% of people with CIDP (those who have the relapsing/remitting form.) Those of us with the progressive form often have to try a more drastic treatment program to arrest the CIDP, I know I had to. I hope you get a neuro this time willing to go for a treatment plan that will actually work for you…
AnonymousJune 16, 2010 at 4:03 am
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
AnonymousJune 16, 2010 at 6:16 am
I am being weaned off prednizone and havind plasma treatments IVIG did not work for me. Shower chair is a basic need for me and my walker. At 34 with 4 kids the youngest neing 3 months and one child with disabilities of her own I fight everyday to stay as mobile as possible. Try and stay positive and research for yourself so when you talk to the docs they wont be able to not listen if you know what your talking about. that has been my experience both for myself and my daughter over the years.
good luck & god bless
AnonymousJune 16, 2010 at 3:55 pm
[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
AnonymousJune 19, 2010 at 2:54 pm
regarding the prednisone…
If you are taking it a couple of times a day, you can either change it to once a day with food, or definitely not take it before bedtime. It will get you so hyped up you won’t sleep. When I was on prednisone, 60 mg every day, then weaned off, my doc said I could either combine the evening dose and just take 2x a day, once in the morning, and then in the afternoon, but not at night, or just take all 60 in the morning, but I absolutely needed to take it with food.
It stopped me from being hyped up all night, and I slept better. If you are still going through that, ask him if it is OK.
AnonymousJune 19, 2010 at 10:46 pm
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
AnonymousJune 20, 2010 at 12:15 am
You have received some great advice, so I only have 1 thing to add.
When I am told by a Doctor’s office that I can’t be seen for months on
end, I take the appointment available. Then I get the name of the person
who does most of the bookings for that Doctor. I call every evening before
the office closes to see if there are any cancellations. Most of the time,
there are. I have been pleasantly surprised to be able to move up my
appointments when other patients cancel.
Offices usually call to confirm appointments the day before. That is why
I call at the end of day after their calls are made. I was just able to move
one of my appointments from July 15th to this coming Monday!
You can also ask if they have a cancellation list. Some doctor’s offices do.
They will call you. It just makes me mad that you should have to wait to
see any doctor. You should be seen right away. Don’t be afraid to say,
“This is an emergency and I need to see him/her ASAP!” I have learned to
be very assertive when making doctor’s appointments. It was hard at first,
but it has gotten easier with time.
I too have had Prednisone issues. (not as bad as yours) Right now, I am
reducing my dosage because of Cellulitis in my leg which left me unable to
walk last week. I have sworn to myself that I will never again take Prednisone
once I am off of it. That’s it. It’s just too dangerous long term.
I wish you well. Please keep up the fight! You have a lot of support on this site.
I am sending you all my prayers. Feel better soon.
AnonymousJune 20, 2010 at 1:02 am
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
AnonymousJuly 4, 2010 at 7:55 pm
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
AnonymousJuly 8, 2010 at 12:59 pm
Very sorry to hear about all the trouble you’ve had with these medical problems, and especially about the battle you’ve had with the medical people and all. 😮 And I sure hope you find some answers that help you.
I’m posting because I’ve got lots of probs with swelling in my legs too, and foot pain. I’ve gained 50 lbs in the past 2 3/4 years since onset after the initial large weight loss and that makes it even harder, but there are a few things which have helped me. Maybe they’ll help you too.
For the dry skin, I use Lubriderm Sensitive Moisture lotion; it relieves the dry skin on my face and around my eyes. Watch out what kind of soap and detergent you use, and how much of it, and how long it stays on your skin; the skin is ultra-sensitive now, and using less is safer. Also, St.Ives Oatmeal BodyWash is a good moisturizing shower bodywash which relieves dry, itchy skin and hasn’t bothered my allergies.
The swelling in the legs is very hard to deal with. I’ve always had some problems with that, and being on corticosteroids since 1993 for asthma has increased the swelling. The GBS/CIDP has doubled the swelling in my legs. The swollen tissues bulge around the knees and calves and ankles. I use very soft and loose, stretchy socks; have double layers of insoles in all of my shoes, wear a large enough shoe-size in comfortable shoe materials to help lessen the foot pain. The foot pain you are describing is typical for us. For me it’s worst when I first stand or walk (like stepping on nails), then lessens after a few minutes. I still have a hard time walking on any uneven or rough surface, and cannot raise my feet more than an inch when walking, and always use a rollator and cane. Climbing up the stairs, I often have to drag my feet up each step. The worst pain is kneeling on one knee or both, and I try to avoid that if at all possible; the agony is unendurable and always causes big purple bruises for weeks. One thing that has helped the swelling to go down somewhat is to rub my knees, legs and feet with mint lotion; you can get it at any drugstore or Walmart.
Sometimes I have better days when I can move my feet more easily and have less pain.
To cope with some of these problems, I give myself a pedicure every week, because the agony of the foot pain is more than I can stand otherwise. I cut off all the little corns or excess skin on the soles of my feet with a tiny sharp scissors, and keep my toenails short and filed smooth. Every day is another day of pain, but some things help. Changing position is very important. Sit for a while, lay down for a while, stand up for a while (stand on a rubber mat), because too much of anything just aggravates the swelling. Cut down on the salt intake, baking powder, baking soda, all processed foods with preservatives (check the packaging); they make the body retain fluid. Eat more meat and the body retains less fluid. Add herbs for flavour instead of salt, ketchup, sauces.
The vertigo was another thing that was very hard to deal with and was worse for the first 1 1/2 years, but gradually the dizziness lessened and my balance improved, and I don’t notice much dizziness nowadays. I drink apple juice or Welch’s grape juice daily, and that helped a lot with the headaches and dizziness. Another thing that really helped was mixing 2 tablespoons of Heinz Apple Cider Vinegar in a cup of boiling hot water, sugar added; and then just sip slowly once a day. Within half an hour, my headache lessened and my head wasn’t as dizzy. Headaches were constant and terrible for the first 2 years, but are infrequent now. Healing is happening, so always remember that, no matter what you are dealing with. But it takes months to notice any real change in progress, I find.
As I’ve said before, if I could still raise my foot, I’d like to give my old doc a kick for everything he did to me and didn’t do for me, and that goes for your doc too, and the rest of the ignorant, useless docs out there. 😡
Wish I could be of more help, and I’m very sorry for all of your suffering; but you’ve come to the right place for understanding, and at least we can offer you that.
AnonymousJuly 8, 2010 at 5:49 pm
My son Ryan is 21 and has CIDP. He is doing much better since receiving cytoxan for 6 months. the neuro thinks he is in remission.
However Ryan doesn’t sweat right either, be careful when in the heat, it could cause you to over heat and have a heat stroke. sweating helps the body cool. Ryan has to stay in the air conditioning if its really hot.
As for the foot cramps and pain Ryan also gets it but it helps when I stretch his feet. I do this by grabbing hold of his foot and pushing his foot forward to make his toes stand straight up. if I were to do it on my own foot I would merely be flexing my feet up and down. but I go up and down and then I rotate his foot. this stretches his muscles in his ankles and foot. he says it helps with the cramps and pain. I do this like 20 times a day. if I am not home he gets a sheet and wraps it around his foot and pulls teh sheet toward him. he says it doesn’t work as well and when I do it. hope this helps.. rhonda (ryans mom)
AnonymousJuly 14, 2010 at 1:19 am
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
AnonymousJuly 14, 2010 at 5:17 am
Dave, Don’t give up. Unfortunately some of the best neuros are booked well in advance. When you make your appointment ask him what to do when you call for an appointment for what you think is a critical change and they tell you it will be 3 months out. My neuro was the same way, but when I questioned him about that aspect he advised me to give him a call and he would address the change immediately. He has done so for me and got me in the next day. My prayers and thoughts are with you. God Bless
AnonymousJuly 20, 2010 at 11:30 pm
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
AnonymousSeptember 24, 2010 at 9:14 am
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
October 10, 2010 at 3:41 pm
sorry for all you have been through 🙁 I always wondered how Dr.s can tell the difference from cidp and cmt because a lot of the syptoms sound the same?? can they determine that from the emg tests or do they narrow it down throught genetic information?? Did they try various cidp treatments that were unsuccessful before saying it was cmt?? I am by no means a dr.–but would just hate to see anybody not get possible treatment because it’s been diagnosed as cmt. Is there treatment for cmt where its hereditary? i apologize for not knowing a lot about it—just be sure this isnt a way for your insurance company to not have to pay for ivig!!! best of luck. Lori
AnonymousOctober 10, 2010 at 8:13 pm
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
October 10, 2010 at 8:37 pm
Hi Dave-you have definitelt been through a lot!! No I dont suspect cmt–pretty positive about the cidp diagnosis, in my case I was fortunate enough ( if any of us can consider this crap fortunate) that they actually found an antibody in my blood that is causing the cidp (to potassium) so along with using how i am feeling and my strength they are also able to test for increase or decrease in the antibody to see how treatments are working—which after 1 year of ivig every 12 weeks did not change: ( I was reading through some older posts on here and saw that there were some members who are diagnosed with both cidp and cmt??? I was glad that there is at least a genetic test that they can do to tell that it is DEFINITELY cmt, sorry that you have cmt. Where it is hereditary you would think it would start as a child or during developing years–not adulthood?? Lori
AnonymousOctober 10, 2010 at 9:00 pm
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
October 10, 2010 at 9:49 pm
Yeah–i am in the process of coming off the steroids right now–thank god! didnt do much for me, caused wt.loss, irritibility, and weakness–I guess the prednisone affected the potassium level in me, lots of cramping,twitching–cant wait to get off it completely-down from 50mg to 20 right now. Guess i’ll be sticking with just the ivig for now. So now probably after many hours of researching cidp you will switch to cmt:( I think the other members who were diagnosed with both cidp and cmt were right around pg 4 or 5 on here if your’e interested in seeing what info they may have. Lori
AnonymousOctober 10, 2010 at 11:32 pm
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
October 11, 2010 at 1:34 pm
coming off the prednisone hasnt been too bad so far–i actually feel better coming off it then when i was on the higher dose–i was on 50 mg for 8 weeks,20 mg right now–ive read that coming down from 20 is the hardest part–will most likely start this thurs after seeing dr. just eating lots of bananas to keep up with the loss of potassium from prednisone–and hoping my immune system doesnt attack all the potassium before it gets where it needs to go–lol. Your prednisone experience does sound a lot like mine was, when i was on 50–hasnt been bad since below–i wonder if 50 was just too much for me, I weigh 137 and being female from what ive read thats a pretty hefty dose??? Im kinda liking the 20–things that would normally stess me–aren’t. starting to get back the leg strength i lost on the high dose–i guess it can take up to 3 months 🙁 bad stuff i cant believe i requested to try it–guess i was just desperate to cure this crap. I have to be kind of pushy with my dr–shes very conservative and i just want to get this fixed–the waiting to see if new things are going to work is the worst—i dont know about you–but i start ?ing every buzz and tingle–is it more degnerating nerves or is it a sign of regenerating? Lori
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