vent your frustrations here

Hi Gene: Good idea. I hate the fatigue and having to take two naps a day like a two year old and getting tired just as things get interesting. I hate burning feet and especially that I can walk no further than I could a year ago! That felt good, but I may just be getting started. Jeff

I really hate when my hands shake while signing on forms or cheques or writing on paper or on dinning table or in office [especially people look at that and unknowingly (about GBS) ask me whether I am anxious or what] and when I notice strangeness in their eyes.

It irritates me when people look at me while i’m using a scooter in the grocery store and say “she doesn’t need that-she looks just fine to me!”. It really burns me up when people park in a handicapped parking space to go into a store or whatever and they don’t have a handicapped plackard and actually run into the business.

thanks for starting this thread, gene, now you’ve asked for it!:)

It annoys me when people say ‘Gee you look good’ when you feel terrible.
It annoys me that I have to take medication to be able to perform some of the tasks I did before GBS.
It annoys me that I get so tired quick.
It annoys me how I battle to stay positive.
It annoys me that I place a lot of pressure on myself and when I fail to perform I feel let down.
It annoys me that I feel annoyed.

Thanks gene I did see this on the uk forum and vented there. It seems to feel better the second time you do it. (Ha Ha)

Debbie

Just a quick “Amen” to all of these statements. I get it all the time…………….will write more later.

Love ya, 🙂 🙂 😉

Per

Hello,
Now that other’s have “vented”, maybe I’m not being a crybaby by posting mine. I may feel better by putting it in words.

#1. I live with so much stress in my life that it consumes me and the stress has taken away a good nights sleep. I cannot control the stress because I live with it.

#2. My family is not there to help me, they do very little for me and I wouldn’t even be surprised in they didn’t know what syndrome I have.

#3. MY BIGGEST FRUSTRATION IS TRANSPORTATION. I cannot drive and because there are no family and friends who offer to take me out, I must depend on a Home Care Agency. My home care agency has gone up in price, so I only go out every three weeks now. I am housebound the rest of the days.

Hey All:

I get frustrated when people tell me how much better I look when they have absolutely no concept of understanding the constant pain that goes on in my hands and feet. I am a lot better than I used to be, but I seem to have plateaued out on improvement and feel like I’m going to be like this for the rest of my life.

Hugs to All
Val

Hi,

I feel exactly like Jules01. People have no idea but that’s okay. That’s just the way it is. I am luck enough to be able to vent to my husband once in a while. Don’t want to do it to often because he has enough to be concerned with.

Pam K.

Hi Cheryl,

The handicapped parking thing pisses me off to no end. I have screamed at people who park there without sticker and they tell me, I just had to run into the store for 1 minute. One minute my ass, they are the most useless pieces of human waste in my opinion. They only care about themselves and not the fact that a handicapped person couldn’t park there because their lazy asses didn’t want to walk a few feet to the store and they are as healthy as can be. 😡

There are people who complain about the amount of time necessary for the disabled to climb into a kneeling bus or, even worse in my opinion, the time necessary to get a wheelchair in the bus and locked into position.

Regards,
Marge

I hate feeling guilty because I need to sleep so often.
I’m so frustrated that I cant do what I used to do, yet everyone seems to take it for granted that I can.
“… so how are you?”, the easiest answer is “i’m ok thank you”, I mean, do they [I]really[/I] want to know?

😡 😡 President Bush and his veto today of embryonic stem cell research.:mad: 😡

President Bush

Not being able to lift more than 3 lb dumbbells over my head

my annoying tingling feet

People who look at me and say, well, you LOOK normal!!!!??!!!!

People who stare at me when I get out of the handicap spot

Having poor endurance (cant swim more than 1 lap) 🙁

GRRRRRRRRRRR!!!!!!!!!!!!!!!!!!!11 😡 😡 😡

what dont I hate?
I cant cook, or clean.
I cant get down th *%#@$%& stairs without help
I hate the people turnen their heads becuse I have a walker
it realy erks me when a lady in her 70’s can walk faster than me
I hate denping on my husband for just about everything
I’m realy bent that we couldnt get a boat for the past 7 years, as soon as we got 1, I got hit with GBS and cant hold a fishen pole, much less bait my own hook
I hate that I cant drive
I can hardly open a can of food
I think that about covers it, LOL

Hate it when my feet do not seem to know where they should be going!
My chiropodist/podiatrist has done well from my damaged toes!!

Good idea gene to copy this from our UK site. It was started as a contrast with the Daily Delights thread. 😮

it makes me upset that the president didn’t listen and look into all the good that embryonic stem cell research could do. like cure soooooo many diseases and illnesses. it just doesn’t make sense to me why he vetoed it. i sure hope George W doesn’t come down with gbs/cidp, bet he would take back that signature in 1 second! if only he would put himself in “our” shoes for 2 days!

why does the handicapped parking sign have $250 to max $500 on them?! does that mean you can park there if you spend that amount in the store ??!!! :rolleyes:

if irks me when i try soo hard to be positive and then get told i’m soo negative towards life. i have been dead and came back, have been paralyzed head to toes 4 times in 9 months, i just don’t see it myself.:confused:
i have had to change my outlook on life sooo many times, i think i am a very positive person, i have accepted my life as it comes and i don’t wish it on anyone else, and i have never asked why me, that in itself is a positive thing to me.

The fatigue! I take the time to “dress up ~ makeup ~ put shoes on” and then I’m to tired to go to said activity 🙁 OR I push myself to go anyhow and then pay the great price over the next day(s)! What challenges we each one have! Thank you, thank you to all the cheerleaders who post 🙂 Oh yea, I greatly dislike drooling from the weak corner of my mouth in the middle of the nite :p

[QUOTE=Brandy]:mad: 😡 President Bush and his veto today of embryonic stem cell research.:mad: :mad:[/QUOTE]

I hear your frustration on that. But some info on the subject to keep it in perspective. First of all, there have been over [B]200 [/B] effective therapies (now in use) from [B]ADULT[/B] stem cell lines and exactly [B]ZERO [/B]from [B]embryonic[/B] stem cell lines. Much of the “promise” and potential of embryonic research that researchers tout was proven to be premature (no pun intended) when the South Korean scientist who supposedly made so many great discoveries with embryonic cells was recently exposed as a hoax.

The fact is, most researchers in this area agree that adult stem cells hold much more potential than embryonic cells. And there is no law preventing private money from pursuing further research using embryonic cells. The veto was over the use of using TAXPAYER money to fund embryonic research, which would naturally lead to destroying embryos for money. The Federal government has no business trying to lead this sort of research anyway. Let private enterprise do it, because everything the Federal government undertakes to do, it eventually screws up.

The “debate”over embryonic stem cells is driven, IMO, mainly by the abortion interests (who see acknowledgement of embryos as anything other than a clump of “tissue” as a blow against [I]them[/I]), and certain bureaucrats among the scientific community who always expect taxpayer funding (no matter their project). The rest of us simply see the headline: “Bush vetoes research” and are never told the whole story.

I’m all for advanced research with stem cells. My father is diabetic, and could benefit greatly from future research. Not to mention my experience with GBS, and the possibility of eliminating GBS altogether in the future. But if it means buthering human embryos to do it (it won’t), I could not live with that kind of “cure” on my conscience. Bush hasn’t vetoed anything that would help anyone, and I applaud him for doing exactly what he said he would do.

Thank you gene for making this “spin-off” spin off across the Pond!

The weather and the summer here on the coast of Norway is too wonderful to be frustrated in – but I will most probably need to vent sooner or later too! And now I can do it two-fold, both here and on the UK thread I started a while ago. Then I will feel twice as good afterwards, I guess.

Had a long talk with my lady boss today and tried to explain that I am not making up how I feel. I reminded her of my emg/ncv test that proves I have nerve damage. She had the balls (you know what I mean) to say that she thinks I still make up things about how I feel. Then she tells me if I wasn’t so good at what I do I would have been gone long ago. That just all really pisses me off. I know its not her fault that part of this job is just being here for 40 hours a week. I shared with her that my social life is where I sacrifice that work does have a big priority in my life, but my health comes first. She doesn’t agree with that. So screw her.

Thanks, that felt good.

Sound like a reall piece of work!

I am so angry that a rehab facility knows so little about GBS and how to help patients get better……they keep asking if my dad has had a stroke:mad:

test………….

My frustation is that I can’t do what I use to do and now my back is bothering me since about March. I go for my CT Scan tomorrow. Also mad that I haven’t started treatment for my thyroid problem. Also the heat bothers me at work like I can’t take it some days when we get the heatwaves I am totally different; a mad woman. People say it’s the woman thing I say no I was checked for that. Also my frustration is seeing my Dad back in the Ottawa hospital 1 1/2 hrs away waiting for more surgery to unblock an artery in his neck so he doesn’t get more strokes and on Sunday my parents are celebrating there 50th wedding anniversary at the hospital. I can’t help but think that 30yrs ago on Monday one of my brothers past away of Lung disease. The Day after my parent anniversary in the early morning hours. So I worry that something will happen to my Dad next week when they decide he goes in for surgery.

Sue

I hate when useful links are moderated out of the forum postings when they shouldn’t be. These forums are here for us to help each other and one way we do this is to pass on important information and sites through internet links.

I get so mad that I put on make-up, nice clothes and take bath using a bathbench to look decent.Then I go out only to hear that I look way too good to be ill and not working. So what’s the point? The doctors just see me with a smile-maybe I should look like crap and not cover the deep dark circles under my eyes with gobs of concealer.When I’ve done that they stare and put in my med notes I was depressed””
In my house I can be me. Don’t drop by expecting me to look super. Surprised I’m in my pajamas, have dirty hair and the place is dark??? What have you been thinking all this time???? I’m eating cookies and watching the tube??? YEA-YOU HAVE.YOU DON’T GET IT.

That God won’t reveal his plan for me and CIDP or that i’m too ignorant to figure it out.
That people are so selfish (including me).
That we don’t realize how selfish we are.
That people get mad at me for driving the speed limit.
That I’m too nice to just ram into the idiots who cut me off when I’m in my wheelchair.
That I’m depressed.
That I’m so negative.
That people slow down to 30mpg in a 70mph zone if there is someone on the side of the road or if there are “blue lights” on the side of the road.
That truckers don’t obey the “stay in the right 2 lanes” signs.
That I can’t drink large quantities of alcohol anymore.
That there aren’t any radio-active-glass-parking-lots in the middle east yet.
That people who park in handicap spaces without proper signage don’t get tickets even when cops drive right by their cars.
That cops patroling parking lots are too good to get their fat asses out of the car and check the cars parked in handicap spots.
That people run yellow and red lights at intersections.
That I suck at finances.
That I’m stuck in this crappy house.
That this house is too small.
That this house is a wreck.
That most of the time I don’t give a rats ass about most anything anymore …
maybe I shouldn’t have found this thread …

Before I vent my frustration, let me start by saying that I think it is wonderful that we had an administrator on the new forum. I personally believe that they have done a fantastic job in getting rid of all those threads that are advertising or soliciting etc., and there have been plenty of those recently. However ……

Im quite frustrated because a member of the forum started a thread which was closed by the administrator. I have read the thread many times, and Im not sure I unsderstand why it was closed. He asked a perfectly valid question, posed to doctors (who I know are not part of the forum, but I’m not sure it was meant soley for them), and I thought that some of the answers he got would be very interesting, specially if DocDavid, who is a qualified doctor with CIDP, gave us his thoughts on the matter. :confused:

This is the question

[IMG]http://www.gbs-cidp.org/forums/images/icons/icon1.gif[/IMG] [B]a question for the good doctors[/B]
[quote] I have been trying to get information from the CDC about this and seem to be getting no where, its like they have idiots running the email reply system, all they do is give me links that do not answer the question.

Let me start of by saying that I was dx’d GSB Jan 1989, while I was stationed in the U.K. with the Air Force(Mar 88 to Sep 90). Its my understanding that during that time there were some BSE contaminated cows that entered the food system (but I never saw any news on that where there). Because of that the FDA says that anyone that spent more than 3 months there during a time period that I can not remember, can not donate blood.

Now for the question, since I had GBS during the time I was there, with the compromised immune system would I not have shown signs/symptoms of vCJD, or worse already died from it?
[/quote]

Administrators answer :

[quote] [IMG]http://www.gbs-cidp.org/forums/images/icons/icon1.gif[/IMG] [B]Reply from GBS/CIDP Administrator[/B]
[FONT=Times New Roman][SIZE=3]That is a good question. The discussion forum is for patients, family and friends. We do not have any doctors that participate in answering questions on this site. We will present your question to one of our Medical Board members for an answer. Please be patient for the answer. Have you also tried to ask your neurologist this question?

We hope that you are on our mailing list because just this month in our Medical Issue, “The Communicator”, there is a section for Ask the Doctor. This would have been a good question to ask there. We try very hard to present pertinent information to our registrants. You can submit your name for the mailing list on line at [URL=”http://www.gbs-cidp.org/”%5Dwww.gbs-cidp.org%5B/URL%5D. or call the office directly at 610-667-0131.

Thank you,
GBS/CIDP[/SIZE][/FONT]
[/quote]

[CENTER][FONT=Georgia][SIZE=3][COLOR=darkorchid]((((((((((Sir Wallingford))))))))))[/COLOR][/SIZE][/FONT]
[FONT=Georgia][SIZE=3][COLOR=darkorchid]Sending you hugs because I think you could use them. [/COLOR][/SIZE][/FONT][/CENTER]
[FONT=Georgia][SIZE=3][COLOR=darkorchid][/COLOR][/SIZE][/FONT]
[FONT=Georgia][SIZE=3][COLOR=darkorchid](Feel free to pass the hugs to Kaye and Ethan. Or, just keep them all, yourself.) [/COLOR][/SIZE][/FONT]

:rolleyes: hmmm..let me think
fatigue fatigue fatigue..I hate it. I cannot believe how I can feel fine for a little while and then all of a sudden I am done. No warning no nothing, just wiped out.

People saying, my you look so good, do you think you will get to go back to work.

Doctors saying, oh that has nothing to do with GBS. Guess what, I didn’t have it prior to GBS but I sure have it now…(various problems)

Early menopause starting

problems with focus and memory

Can’t enjoy reading like I used to

Did I say fatigue fatigue fatigue

Others just not understanding

But thank god we have each other 😀 that is worth just about anything.

Sherry

My friendship with Brandy!

I hate the fact that very often, when I have a good time, I forget my medication until it’s too late and the pain is already there, and it takes so long before the pain relief kicks in again. I had such a wonderful day yesterday, but to-day I pay for forgetting my illness for a few hours.(Bad word – bad word – bad word)!

My blood is drawn weekly by a technician who comes to my apartment. Today I had to remind her to wear gloves. Isn’t that essential? Of course it is.

Regards,
Marge

When I worked for an Internist, I couldn’t stress hard enough for the gals in the office to wear rubber gloves, because some patients are known as blood spurters, meaning their blood spurts out all over the the techs. Just wearing gloves is not enough for the techs protection, they should be wearing special gowns and wrap around glasses that should be provided by their employer. I have had a spurters and their blood was on me from head to toe, but I always wore full protection, so I never had a problem. If the girls were caught not wearing any protection, they were reprimanded, if they did it more then 2 times they were fired by the Dr for not following procedure.

Some techs feel that wearing protection is to cumbersome for them, I say to them “You are an idiot to play with your life”

Way to many diseases out there that can kill you.

I hate looking around or thinking about all of the things that I would like to do that I could have done before GBS, but can no longer manage.

Is this what it’s like to be old? For my mother and all older people, I sure hope not.

I hate that I used to be very articulate before GBS and now it seems I can’t get the words out of my head. I can see it in my head but I stumble around before I can finally say the word I am looking for. I hate that it makes me feel stupid … Grrr…

I hate that some days I lay down on the couch “for a few minutes” and then the fatigue hits me so hard I literally can’t get back up for hours.

I hate that when I walk anywhere my hands and feet “hum/burn” like I just grabbed a hold of a live electrical wire.

I hate that I can’t remember the little things any more and that I get confused and forget what I was just doing.

I hate feeling depressed and not having anyone to talk to about it without them worrying that I need to be medicated more. Like I want more pills in my diet – NOT!

I hate that when I miss taking my pain meds by a few hours (in the evening) I pay for it by hurting all night until I take my next dose – which means no sleep, then additional fatigue the next day.

I hate that I cannot get rid of this and that it may never get better…but that it is not bad enough now for people to see that I have a problem so they assume that I am okay and don’t understand when I cannot do the things I used to do.

Hi Guys

Sorry but I have to vent, I’m so frustrated, and so angry, so here it goes!

About 2 weeks ago I was getting up from the sofa when my foot slipped on the rug and my foot went into the leg of the coffee table, separating the toes. Now I’m always getting into trouble for going around bare footed, but even the lightest of shoes causes me pain, as many of us know.

My toes quickly became swollen. My son Marc came over (he’s a A&E nurse and paramedic) and told me “we don’t do much for toes, just strap them up to make them more comfortable” I was relieved as I did not fancy a trip to the hospital.
A week and half later I’m still hobbling around, when my husband said he really thought I should go and get it x-rayed. Had to agree that it did not seem any better, in fact the pain was just as bad as when I had done it.

Off to A&E where I was examined, had an x-ray, which confirmed 2 fractures in toes and 1 in the foot. Now here comes my vent……………….

Explained what happened a week and half ago.

Doctor….. We don’t do anything for toes, why don’t you walk on your heel? It won’t heal if you walk on it.

Me…. I can’t walk on my heel, have no strength in my ankles or feet to do that.

Doctor…. Why? Everyone can walk on their heels?

I then explained that I had GBS in 1968, took 4 years to walk, slight relapse 2000 etc etc

Doctor…… Who said in 68 you had GBS?

Me…….. A Neurologist and several other doctors.

Doctor….. How did they know that?

Me……. well I was paralyzed, they did a lumbar puncture, and that confirmed it.

Doctor…… How did the lumbar puncture comfirm it?

Doctor…… You sure they said it was GBS?

Me….. yes positive, the neurologist confirmed this again in 2000, when I had a slight relapse.
In 1968 they took spinal fluid and the protein was elevated, it was very high. I was in hospital for over a year, and I told you it took 4 years for me to walk.

Doctor…… How did it affect you?

Me…… It affected my legs, arms, the only thing it did not affect was my breathing. I was very lucky there.

Doctor…… well thats very rare if it affects your breathing.

Me…… under my breath………are you joking

Doctor…… You sure it was not polio?

Me….. No not polio, I’m sure.

Doctor…… Well your legs are showing muscle wastage, and your ankles are very thin, not GBS.

Me…… Look, I had Guillan-Barre Syndrome, not polio. I had flu beforehand on both occasions, and then the paralysis started in the extremities. Please get in touch with my doctor if you need to confirm my diagnosis, she has all my medical history.

Doctor……. well, your toes will never heal if you walk on that foot, you must walk on your heel. Stand up now and let me see you walking on your heel…..please, like this. He then walked up and down on his heel.

Me………. Getting up and heading straight out of the door, only to be followed by another doctor who was in the next cubicle and asked if he could have a word with me. Seems he heard everything and suggested that I use crutches for a week. Then he said I was to go to fracture clinic, if no improvement they will then plaster my foot, not a normal procedure but the best thing for me under the circumstances. I didn’t know if to kiss him or cry on his shoulder.
So here I am with the crutches, trying not to put the foot down, going Thursday to fracture clinic…………..please pray that I don’t see the same doctor because I may not be able to control myself if he mentions heels again…………. and you just might see me on the BBC news making history!

Sorry to go on, but I get so fed up of having to explain why I can’t do certain things, especially when people say “well you look normal to me” when they are looking at me from the waist up argh!!!!!!!!

A feeling a little better
Suzy

Kathryn,

Wow!! That was great. I hope you feel as much better after posting your vent as I did reading it. I know exactly how you feel because I have those same feelings and about the same things.

Hang in there!

Suzy,

I hope you won’t be mad, but your post made me laugh! I know it’s not funny what happened to you, and believe me I understand the feelings you must have had while it was going on, but reading about it later is pretty funny.

I’ve had docs who DON’T LISTEN or who won’t believe that I know what I’m talking about too. It makes me want to , to, to….. well, I won’t say, but I’m sure you know.

Keep your sense of humor and things will get easier.

Hello,
I wasn’t going to post this, but it still angers me and maybe it will be a good follow-up to Suzy’s venting.

I was going to go back to physical therapy again and I chose to go to the PT clinic at a rehab hospital near me because I thought they would have a good understanding of my syndrome (CIDP) and I knew a rehab hospital would be well equipted. I went for an evaluation. The therapist who I would be working with didn’t know what CIDP was. During the evaluation she asked me WHY I wanted physical therapy. My answers weren’t good enough for her and she kept badgering me “why did I want physical therapy”. She wanted an answer that my insurance would accept. She had me so upset, I could feel I was on the verge of tears. I have gone to PT clinics off and on for several years and that was the first time I was questioned like that. DOESN’T MY SYNDROME SPEAK FOR ITSELF ABOUT WHY I WANTED PT!! It’s documented that PT is a recommended treatment!

I DIDN”T LIKE THE THERAPIST, I WAS UNCOMFORTABLE WITH HER and I didn’t go.

Liz,

I’m so sorry for what happened with your PT.

I don’t know if it effects you like this, but for me, having to go to PT always reminds me that I’m no longer “normal” which makes me want to cry. The way a PT or tech treats me has a lot to do with how effective the therapy session will be, and with my attitude that day and for many days afterwards.

Don’t give up on PT just because you got hooked up with a jerk of a therapist last time. Find one you like and keep going to him/her. It’s worth the effort.

Best wishes.

Suzy,

Just as Suzanne said, after the fact I had to laugh at the interaction between you and the doctor 😀 . Your posts on [I]post GBS[/I] on the old forum were always my ‘lifeline’, for lack of a better word. Compactdisc told us in May how to try and retrieve old forum threads, and I managed to retrieve quite a few of your old posts to take to my Rheumatologist so that he could read – all that trouble, [I]and he didnt even want to see them, which is TYPICAL of some of the docs I have seen.[/I]

[FONT=Comic Sans MS][quote]tomorrow [FONT=Comic Sans MS]morning I will be seeing a Rheumatologist to see if I can finally get some answers. I have printed out a few threads that I found from the old forum, and I have the article to print from Dr. [I]Kleopa,[/I] but unfortunately the printer has decided to play up. In any case, after my visit to the [B]neurologist last year, where she clearly said that if I had GBS 20 years ago, I wouldnt have any risiduals like fatigue, or for that matter, have any problems related to GBS whatsoever now. [/B]

………. To say I’m a little scared and extremely wary of going is an understatement. I am so hesitant to seek medical help anymore, and are so distrustful of doctors that I think if I leave feeling as I have leaving the neurologist or sometimes our doctors office, alternative medicine is my next option. [B]I want to be a healthy, happy and vibrant person, and not a moaning lame duck![/B] But somehow I feel that a lot of doctors are suspicious of our motives when we see them. Why would ANYONE want to feel like this is beyond me. If I leave the Rheumatologists office tomorrow feeling like I did leaving the neurologists, I really dont know what I will do. My 4 year old son will be with me and my husband is in California and I just wish I had someone at home to talk to when I come back from the appointment. In many ways I am optimistic about seeing him, but what if ……..? Sorry about the moan, just had a good cry, and it was quite good to get it off my chest.[/FONT][/quote][/FONT]

*tounge in cheek* [B]Let us know how walking on those heels go Suzy Q [/B]:rolleyes:

*************

I hate it when doctors make me feel small because they THINK I know nothing and that they are superior. I hate if that they dont even listen to what I have to say and are so ready to dismiss what I do say.

[QUOTE=ali]Suzy,

Compactdisc told us in May how to try and retrieve old forum threads, ……and he didnt even want to see them[/QUOTE]

My daughter’s neuro looked at them and said that (all of) you are lying – and then billed @ $300 per hour.

I am FRUSTRATED that this site, which is a lot of times my link to the outside world ,is being abused by perverts, advertisers, and general low life. Why they feel they have the right to invade our space is beyond me. This site has literally been a Godsend to me and I don’t want to see it ruined by sub-humans who have nothing better to do than post obscene links,etc. Can somebody please stop this nonsense?

I hate when my doctor treats me like I’m dumb and know nothing about my own body. I shake alot and my doctor wants to know what drugs I’m taking. ( I take no drugs). I get tired easy and he says its stress. According to him GBS will NOT make you tired and will NOT cause you to shake. Then he says maybe its in my head. I now hate doctors.

Tammie,

You need a new doctor. The one you have isn’t listening and doesn’t respect you – this should not be a one sided relationship – you need someone who will help you get better, not deny your problems and try to impose his/her will on you.

I know how you feel, because I”ve had my share of them too. You don’t have to let them continue to treat you that way. Speak up. Tell them calmly and reasonably how you feel about the way you are being treated and give specific examples of why you feel this way.

If that doc won’t change their way of dealing with you, don’t give up, go find someone else. If they still aren’t the right one, try another. You’ll eventually find someone who can be your partner in getting better.

Really, not all docs are like that. I’m sorry to hear that you’ve lost faith in them. There are some great ones out there who will be on your side.

Best wishes for good health.

Compactdisk,

That is one bill that shouldn’t get paid. I’d call the doc and tell him why.
Good luck!

I know many doctors are arrogant and cover their ignorance of this disease with sarcasm and dismissal. I had fevers for months and was told it was not GBS related and I had nighttime fugue states and altered mentation and was told it was the medication, though studies now confirm that some GBS patients have dream disturbances like I did. But though they made mistakes I had great doctors and a great neurologist now who writes down everything I say and tries to find answers for me. We know our bodies but we need good docs too so keep looking until you find one of those-they are out there even if a rare species. Good luck, Jeff

Amen to many of the statements given. I have been so frustrated when people say, “You look wonderful!!!”. I didn’t know exactly why this made me feel so bad. However, I finally realize that it negates how I feel (in pain, exhausted, etc.) AND along with this comes the expectations that, “Since you look so wonderful, you are obviously ready to work at your optimum level.”
Thanks to all — you make such wonderful contributions here!!
Brenda

Suzanne,
Thanks for the support!

I’d like to add that although we have been through many doctors that were not interested in taking such a challenging case, persistence does pay. One of the first doctors we saw when Jen was diagnosed last October just shook his head and commented that there was no cure, and left the hospital room. My daughter and I were in such shock. We never wanted to see him again, thinking it was only a matter of time.

Fate brought us together again one night when I rushed my daughter to the emergency room and he was on call. This was at a time when the hospital could not (would not?) accept ivig patients due to the shortage. To make a long story short, I was able to develope a relationship with this man, and educate him about the many variants of gbs, and the neccessity for continuing care. He was compassionate and understanding, and became an ally in our struggle to get ivig. To this day, I credit him, knowing my daughter now has access to a weekly infusion that he had to fight for.

By the way, he is not the same neuro I spoke of in my earlier post – that one is history!

cd

Compactdisk,

What a heartening story! You helped to prevent this doc from making the same mistakes with other patients, and developed a good relationship with him, despite his horrific first reaction. Thanks for telling us.

You helped me to make a decision. I’m going to try to educate the first neurologist that saw me after GBS onset.

He failed to diagnose me, waited for a month to do a spinal tap and EMG (and did this poorly), left me at home when I should have been in ICU, and failed to tell me or my husband that I could stop breathing etc. He acted like he thought I was faking the pain and weakness (asked me why I came to his office using a walker), and even put a note in my medical records that I was probably addicted to pain meds!

By the time I was finally diagnosed at Johns Hopkins Hospital, 3 months after onset, it was too late to do IgIv or pp. I believe that not receiving early diagnosis and treatment is the main reason that I still have residuals today, and may have for the rest of my life.

Being ignorant of the disease myself, I didn’t realize, until much later, how poor his skills were, and how his lack of knowledge and concern effected my recovery.

I trusted this man with my health, and instead of helping me, he put my life at risk, and is most likely responsible for leaving me with permanent pain and weakness that could have been prevented or lessened. I realize that anyone can make a mistake, but I honestly believe this man was negligent.

I have been very angry about this since I educated myself about the disease. He still works at the health care facility where I am treated by another doc.

Instead of leaping on him and (you can fill in the blanks) as I feel like doing, I am going to give him the benefit of the doubt. I’ll give him the information to help him be a better doc for the next patient. Whether he takes this to heart, as your doc did, or not is up to him, but after reading your post, I think it’s worth a try.

I’m so happy that you were able to turn a bad situation around.

Compactdisk,

What a heartening story! You helped to prevent this doc from making the same mistakes with other patients, and developed a good relationship with him, despite his horrific first reaction. Thanks for telling us.

You helped me to make a decision. I’m going to try to educate the first neurologist that saw me after GBS onset.

He failed to diagnose me, waited for a month to do a spinal tap and EMG (and did this poorly), left me at home when I should have been in ICU, and failed to tell me or my husband that I could stop breathing etc. He acted like he thought I was faking the pain and weakness (asked me why I came to his office using a walker), and even put a note in my medical records that I was probably addicted to pain meds!

By the time I was finally diagnosed at Johns Hopkins Hospital, 3 months after onset, it was too late to do IgIv or pp. I believe that not receiving early diagnosis and treatment is the main reason that I still have residuals today, and may have for the rest of my life.

Being ignorant of the disease myself, I didn’t realize, until much later, how poor his skills were, and how his lack of knowledge and concern effected my recovery.

I trusted this man with my health, and instead of helping me, he put my life at risk, and is most likely responsible for leaving me with permanent pain and weakness that could have been prevented or lessened. I realize that anyone can make a mistake, but I honestly believe this man was negligent.

I have been very angry about this since I educated myself about the disease. He still works at the health care facility where I am treated by another doc.

Instead of leaping on him and (you can fill in the blanks) as I feel like doing, I am going to give him the benefit of the doubt. I’ll give him the information to help him be a better doc for the next patient. Whether he takes this to heart, as your doc did, or not is up to him, but after reading your post, I think it’s worth a try.

I’m so happy that you were able to turn a bad situation around.

Hello,
I’ve been through EIGHT neurologists, two were just for consultations when I was trying to move in the right direction, number 6, was my keeper who got me where I am today, “healing and recovering”. NUMBER 3 was the worst, when he checked my reflex’s after a five day series of IVIG’s and there were none, he told me I had no hope and he told me insurance wouldn’t pay for more IVIG’s that would do nothing.

WE DO HAVE HOPE.
NEVER NEVER NEVER NEVER
GIVE UP

I think this is the worst hurdle many of us go through – not being believed or understood because so often there are no visible clues when we first present with symptoms. The frustrating part in all of this, is that once a diagnosis has been made, many doctors, whose knowledge of gbs/cidp consists of a 30 minute textbook acquaintance back in the ol’ school days, automatically make a decision that there’s nothing they can do – just let it run it’s course and we’ll watch and see what happens.

Suzanne,

[QUOTE=Suzanne]
Being ignorant of the disease myself, I didn’t realize, until much later, how poor his skills were, and how his lack of knowledge and concern effected my recovery.
[/QUOTE]

How could you know? – especially at a time when you are most vulnerable? That is exactly why they are doctors, and what they get paid to do. I know that every doctor can’t possibly know everything about every illness, but I had always assumed that collectively, through a larger institution (such as a hospital, clinic), doctors had a system of collaboration, shared knowledge, and a network of communication that empowered them to provide accurate and timely treatment. As a carer of a cidp’er, my most important role has become advocate and watchdog. I don’t mean that in a threatening way, but I know that in a few instances, if I had not perservered, things could have been much worse.

I encourage you to continue providing the neuro with updated, relevant research on gbs. After a visit to the doctor, I fax their office any supporting documents I feel necessary to get them up to speed if there are gross discrepancies, and usually follow it up with a phone call to the receptionist, letting them know it is urgent that the physician has this information. (past examples: gbs can reoccur, importance of ivig maintenence, rituxan, etc). This is one way to quickly find out which doctors just simply don’t care. In my opinion, any neurologist that falls in this category is negligent!

My very best wishes to you for continuing recovery. My new motto has now become “Perseverence Pays!”

cd

Compactdisk,

Thanks for the encouragement. Also, good advice about faxing and phoning for follow up info. I’ll keep that in mind too.

Hi I just needed to vent my frustration. I have an hearing aid that needs repair for a second time. This time it is going to cost me $230.00. I will get it back in about 2 weeks. The first time I think was under the warranty but I find they don’t make them to last that long and then they breakdown then you have to dish out more money. The Ontario Government gives a person $500. to get 1 every 3 years and my work insurance pays $400. every 4 years. So I can’t get one till spring 2008. The price of my hearing aid was $1600 in 2004. I find that with my back problems trying to get my thyroid problems sorted out still having pain do to my nerve biopsy 14 months later and [B]tired[/B] alot from stress and pain medication and my CIDP and possible thyroid problems and trying to get my ADHD under control. I don’t always get a full week while trying to get my health on the right track or when the heat makes me sick so I have to leave work early a few times this summer so it’s frustrating when an unexpect bill like this comes up.

Thanks for letting me vent
PS: I am on holidays this week hopefully I will try to relax and calm down
Sue

Hi sue,

I’ve said before, nothing like a disease that keeps on giving. Even after a person moves on from it.:) It’s not so much a particular problem that comes up, that bothers me so much, it’s having to go back into the healthcare system that’s driving me nuts. Enjoy your holiday and rest up.

Sue Watters I feel your pain!! GBS has financially ruined me. It could not have happened at a worse time. Working part time while going to nursing school, I had no benefits, but I counted on that income. I am trying to get back full time, but of course, the nasty fatigue has pushed off full time till after the holidays. I have enough prob w/3 days a week. and the doctor bills are horrible. I have 2 doc appts next month already, and my son has two, so that is 4 copays already. I am on hubbys insurance, I cant pick mine back up till I go back full time. Ugh. Well happy labor day to us anyway!!! I am going to enjoy, an ice cold frosty beer!!!! 😀

Thanks Racer and Cara ya I know lots of people are worsed off then I am so I count myself lucky. But isn’t it always when you think things are getting better another bill comes alongs and you say what else is going to break down this time. My brother suppose to help me raise my verranda because it dropped alot on one side then I would like to replace my front door because it is old and made of wood and before I notice the verranda dropping my door would not open so I shaved some off the door. Now once the verranda is back in place there maybe a gap in between my door and door frame and cold air always came in from that door. So I was hoping to put a new front door but not sure if it will happen this year. I also went to my DR’s office to ask the secretary if they got the rest of my lab work result about my thyroid. She said she didn’t have the file so she said the DR must have it.

Thanks everyone I feel better
Sue

In the great scheme of things, my complaint is a small matter.
My new internist called me Marguerite, not Ms. ******. This is disrespectful and implies that the patient is on a lower level from the almighty doctor. The age difference (I am old enough to be this young snot’s mother) makes it even less acceptable. I was very efficient, with lists of meds, my other doctors, information concerning GBS and, after a while, he listened and asked intelligent questions. As long as he does his job and I continue to correct him, we may get along. Time will tell.

Regards,
Marge

I think the least the doctor could do is ask if it’s ok to call you by your first name, but a lot of people never learned good manners.

I like my cat’s vet’s approach – she calls me Suzanne and I call her Stacey. She never talks down to me, but always acts like a professional.

[SIZE=”2″][COLOR=”Purple”]After going through my tests at the hospital yesterday, I have a renewed frustration about total lack of knowledge about CIDP on the part of the health care profession. I interacted yesterday with R.N.’s, speech pathologist, radiology and a physician. If I hear “what is that “one more time, I’m going to scream, even though I can’t scream! This is what took the cake—-The physician performing the procedure comes in and I start explaining my symptoms, that I have CIDP, and then he stops me. “What is that”, so again I explain and he says he had never heard of it ; “And what doctor diagnosed that”?, like he didn’t even believe it was a real disease. I’d like to think he went home and looked it up, but I really doubt that happened……………thank you, I feel better now!……….Vicki:mad: [/COLOR][/SIZE]

Okay, I went to my neuro last week to refill my Lyrica prescription – which by the way, already had 5 refills on it, but my new Army hosipatal wouldn’t allow me to refill it in NM because it had been originally filled at an Army hopistal in Wa D.C. so I either had to return to D.C. to refill it or get a new prescription. Don’t these people work for the same system?????

In the middle of being nice enough to give me a new prescription for the meds I had already been approved to receive, he asks me all these questions about GBS symptoms/residual side-effects (because he really doesn’t know anything about it except what he has read) and then proceeds to tell me that I have to be careful what I read on the internet because there is a lot of complaining about fatigue and that really isn’t a GBS symptom. I wanted to smack him up side the noggin. I for one can tell him that it IS a residual side effect. Either that or someone sneaks in my house periodically (without warning) and knocks me senseless for several inconvenient hours each week.

Where do some of these doctors come from??? I wish I had a magic button which I could push to trade bodies with them for 1 hour so I could say “now, tell me again how it isn’t a ‘real problem’…”

My psychotherapist knows me so well and called to see how my visit to the internist went. After we talked for a while, I realized why I reacted so strongly. It relates to the early days of GBS when the head of pt at the nursing home unilaterally stopped all therapy because “she will never walk again.” The “good patient” would have accepted that medical decision but I didn’t. God save us from “I know everything” members of the medical profession.

Regards,
Marge

Hi,

I’ve said over an over here, pain and fatigue are the number one complaints doctors hear every day across America. That’s where it’s coming from.

[QUOTE=marguerite]My psychotherapist knows me so well and called to see how my visit to the internist went. After we talked for a while, I realized why I reacted so strongly. It relates to the early days of GBS when the head of pt at the nursing home unilaterally stopped all therapy because “she will never walk again.” The “good patient” would have accepted that medical decision but I didn’t. God save us from “I know everything” members of the medical profession.

Regards,
Marge[/QUOTE]

I for one am glad that you didn’t listen to them Marge.

In the medical profession, I say 80% walk around like little Gods thinking they know it all when they don’t. That’s quite obvious when you read so many posts right here at the Foundation.

Yesterday I told my GP I am still fatigued. She asked me if I was taking a multi vitamin with iron. UGHHGHH!!!!! :confused: I dont think any doctor understands GBS. Duh.

I gave the new internist a copy of Dr. Perry’s article about fatigue. Don’t think it helped but at least he took it. The little tin doctor gods should get caught in the rain…rust might improve them.

Regards,
Marge

AMEN Marge!

Hey,

As you can see by the responces, as soon as the docs hear the words, pain or fatigue, their brain goes click, I’ve got another one here. They’ve gotten so immune to hearing it, it’s automatic. My GP, whom I’ve seen for a few years now was doing great, being really understanding and letting me educate him on the residuals us GBSers live with, and when we find something that works, it’s almost impossable, to me anyway, to let go of it. Been threw too much trial and error already. After being on a certain pain med all this time, and no objection what so ever from him, one visit I asked for a slight increase in my prescription, for times I hurt myself around the house. Saw his face and body language light up like a billboard on broadway. Got another drug seeker in front of me. Started objecting, wanted to start experimenting with other junk, and our relationship almost ended there. Took me by surprise, but I found another way to get what I needed from him, although the time spent thinking he was interested and wanted to know, seems to be a waste. This stuff, educating, wasn’t for me, it’s for the next GBSer you might see in your carreer, and they won’t have half the trouble getting needed help I have had to put up with you idiot.

I was able to get across two positive points–referred internist to Dr. Cohen, one of the chiefs of rehab at Rusk Institute. Dr. Cohen, who started treating me only two years ago, understands GBS and is very proud of my progress. Internist could not question either Dr. Cohen’s dx or Dr. Parry’s report in The Communicator.

While doctors hate sentences that start “I read it on the internet,” they have a hard time putting down comments from acknowledged experts on GBS/CIDP.

Regards,
Marge

Marge,

The neuro who first diagnosed me was a Dr. Cohen. He was wonderful! I was moved from the original hospital where he diagnosed me, and so I ‘lost’ him, but he did come to visit me. I so wish I could speak to him again …..:( A bit of a pointless post, but I just wanted to tell you that everytime you bring the name up, I think of him with such fond memories. I have tried to find him through the internet, but I dont seem to be successful.

Hi M,

I might be more inclined to subsitute another word, instead of expert. Doctor.

You’re right, Groucho. “Expert doctor” is an oxymoron.

Cheers,
Margaret Dumont

Has anyone else noticed that the main forums page is not auto updating, and has not been updated since June 22? This can be rather frustrating if we want to see if there are any new posts in a particular catagory, at a glance, or even see who is online.

It seems that the admin has been preoccupied with stuff to make it more difficault for us to communicate instead of easier. I mean look at the first page, admin stated that they were stopping links to other sites, well we cant even link to the foundation site or within the forum itself. Not being able to link within the forum makes it harder for newbies to be directed to those threads that pertain to their questions.

I dont know why the foundation did not ask those members that have been around for awhile, and do spend an quite a bit of time here at the forums, to be “volunteer moderators” to assist a forum administrator with “policing” the forum. Then the admins time could be better spent trying to make it easier to use and debugging. Just a thought since I know other free forums do this.

Hello Lurius (Bill)
Our discussion board came back in May, after being destroyed by hackers. The “oldies” here refer to this discussion board as the “new” forum. In June, we were down again for a short time and that’s when our opening main page FROZE. The administrators should be aware that this happened, but nothing, as yet, has been done to fix it. What I don’t like is that we can no longer see who our new members are so that we can look for them and welcome them. We have to find their posts.

YOU CAN CHECK WHO’S ONLINE! I DON’T REMEMBER IF IT APPEARS ON BOTTOM OR TOP OF MAIN PAGE, BUT LOOK CAREFULLY IT’S IN FAINT LETTERS AND APPEARS LIKE YOU CAN”T CLICK ON IT. It’s on bottom of page, CURRENTLY ACTIVE USERS, click that.

Lurius I know what you are talking about on that frozen page thing. What I do is on the top of that page I see 6 catagories one is [B]Todays post[/B] click that then you see all the post in the last day. But yes the frozen page is a bothersome to me also it’s because when they re-open the forum they they didn’t sub catagorized the forum properly so when they added the forum it caused them problem. You see the Main Catagory page should be the front page and all the other catagories be underneath it as a sub-catagories/ But if you click on the Main Catagory it’s in a sub-catagory with only main forum underneath it.

Sue

Very good point Bill.

It is a pity that things have been made so difficult, but what could be an easy fix is just left like that. Come to think of it, it is a pity that the time was taken to delete this post of yours, which I think may have been very interesting to many of the GBS/CIDP patients on the forum. :confused:

Posted by Lurius/Bill
[QUOTE]
I have been trying to get information from the CDC about this and seem to be getting no where, its like they have idiots running the email reply system, all they do is give me links that do not answer the question.

Let me start of by saying that I was dx’d GSB Jan 1989, while I was stationed in the U.K. with the Air Force(Mar 88 to Sep 90). Its my understanding that during that time there were some BSE contaminated cows that entered the food system (but I never saw any news on that where there). Because of that the FDA says that anyone that spent more than 3 months there during a time period that I can not remember, can not donate blood.

Now for the question, since I had GBS during the time I was there, with the compromised immune system would I not have shown signs/symptoms of vCJD, or worse already died from it?

Administrators answer :

Quote:
[IMG]http://www.gbs-cidp.org/forums/images/icons/icon1.gif[/IMG] [B]Reply from GBS/CIDP Administrator[/B]
[FONT=Times New Roman][SIZE=3]That is a good question. The discussion forum is for patients, family and friends. We do not have any doctors that participate in answering questions on this site. We will present your question to one of our Medical Board members for an answer. Please be patient for the answer. Have you also tried to ask your neurologist this question?

We hope that you are on our mailing list because just this month in our Medical Issue, “The Communicator”, there is a section for Ask the Doctor. This would have been a good question to ask there. We try very hard to present pertinent information to our registrants. You can submit your name for the mailing list on line at [URL=”http://www.gbs-cidp.org/”%5Dwww.gbs-cidp.org%5B/URL%5D. or call the office directly at 610-667-0131.

Thank you,
GBS/CIDP
[/SIZE][/FONT][/QUOTE]

Fatigue!

When you are in the hospital, the focus is entirely on getting you out and functional again (as it should be). But why did no one ever tell me what to expect when I left? Functionality is returning, but I am so tired just in regular activities that I feel so FRUSTRATED. I want to play with my baby at night, continue to do the laundry, cook, clean, etc … but by 8pm I am ready for bed! And I desperately struggle to convey this to others, including family (all medically trained, from high level nurses to physicians).

Grrrr.

On that note … ” a duck walks into a bar …” guess I better go continue in the appropriate thread.

Thx

I missed Christmas with my entire family this year. I was released from rehab in June 2005 and back to work full time January 2006. December 2006 rolls around and my wife can’t wake me up enough to go anywhere. I never know when I will have enough energy to get on with my day. I am so thankful for how much better I feel than I did, but sometimes I don’t think this will ever end.

I try to stay positive, but when you miss a holiday that you can never get back, that’s tough.

Hey, I do feel better! Back to being positive 😀 , thanks!

posted by Ali
“I hate it when doctors make me feel small because they THINK I know nothing and that they are superior. I hate if that they dont even listen to what I have to say and are so ready to dismiss what I do say.”

I have been educated so much by you, it’s hard to believe a doctor or therapist would not just listen with intent of grabbing knowledge. I’m reading with that intent, but I guess I have the dumbass factor in my head because I know there is knowledge for me and I am uneducated about GBS other than my own symptoms and pains. THANK YOU.:)

Dear Tim

This site is wonderful, you are so right! 🙂 It gives us a bounty of information, and keeps us from going insane …… wellllll ….. a lot of the time at least:p . Many, many doctors are not as knowledgeable about GBS as we are. Thankfully we are able to speak with many others in our situation to see if our symptoms and experiences are the same. Then again we can look at the other side, some knowledge about an illness does not make us experts, and could potentially make us dangerous 😮 .

[COLOR=”Blue”][/COLOR] I agree and the sad thing is I once parked in one about 20 years ago late one night to just “run” into the store for a second. I did get a ticket for $250.00 and I thought it was unfair, because there was so many spaces just as good. But that isn’t the point. I did wrong,even though I’m the kind that would have helped someone get in or out of their car, nevertheless I was in their parking place.

When Nate was first diagnosed, Nate’s first Neuro was really nice at the hospital. That was the only place he was nice.
When we first went to his office after Nate was transferred to a convalescent hospital he was a different person.
I asked him a lot of questions and told him I had learned a lot from this website.
He got this horrified look on his face and proceeded to tell me that was a very dangerous thing!
I could not believe what I was hearing. He was so defensive!
He obviously has the idea that the only correct info about gbs comes from him only, no one else.
He has no idea the comparison between what he told us and the firsthand info on this site and many others. They have nothing at all to do with him or what he knows.
After that every time we went to him he was defensive or didn’t want to spend much time with us.
I was so glad when we moved Nate out of the hospital and home where we could change insurances and find our own doctors.
It amazes me that some doctors think they are so absolutely intellegent and so elite and that no one else knows what they do and that eveyone except their colleagues is beneath them.
They still put on their pants the same way we do and have the same bodily functions that we do.
Grrrrrrrrr

What is the difference between God and a doctor?

God does not try to be a doctor :rolleyes:

First of all – easy on the doctors! I’m in medical school and I promise you that not all of them are bad!

But I also want to vent – when I was in the hospital getting my IVIG treatments, the nurse was having trouble starting my IV (I have very small veins that tend to roll easily, plus I was ill and dehydrated and they were shrunken). They had to call in different nurses, then the phlebotomist, until I had had seven pokes with no luck. Then they called in another technician to give me a PIC line in my arm using ultrasound. As she looked at the veins in my arm she said, “wow, you really have crappy veins”. Something about that really upset me – I mean, after all, my veins WORK fine – they do exactly what they are supposed to do, and therefore I think they are not crappy at all. They would be crappy if they didn’t drain my blood like they were supposed to, or if they spontaneously collapsed 😉 It’s not MY fault that they are hard to poke with a needle. I said as much to her and I could tell she felt bad about what she said, but come on, lady, sensitivity!

Also, I hate it when I’m walking in a group of people who all walk really fast, and I can’t keep up (I walk slow anyway, and GBS didn’t help with that), and they don’t look back to see how far behind I am. Luckily I usually have a friend or two in any given group who knows about my condition and slows down to keep me company 🙂

The experience that most people here on this site have had with doctors has not been all to great, so you’ll have to just except what people say, they have every right to complain about doctors.

I have worked for doctors for over 20 years and believe me there are a lot of crappy ones out there.

Sorry if this offends you.

[QUOTE=Jim C]What is the difference between God and a doctor?

God does not try to be a doctor :rolleyes:[/QUOTE]

[B]Love it Jim and so very true.[/B]

So many of us are struggling due to less-than-good medical care. Keitaikatie ~ you will be a more compassionate doctor because of this experience. Don’t ever forget it!!

There are many, many good docs out there and my son is in medical school with the goal of making a positive difference in the lives of his patients. But the “good old boys” club, who forget we are not a number but each a human being, along with the pharma boys have made a mess of medical care in this country! These same docs, had their wife or mother been treated as we were (and still are) would have retained a lawyer immediately.

Just 2 weeks ago I had another doc say “this can’t be GBS related. You get over that in 2 to 3 years at the most.” I smiled “sweetly” and said, “a year ago I had a complete neuro work up and was declared permanently disabled” to which he said “well, you look good on paper (blood work)”, shrugged his shoulders and left the room.

OK, there’s my vent for today 😀

So did the Hindenburg ! 😎 It looked fine on paper!

LOL:D Tim, you are to funny!!

In one of our newspapers here in the Netherlands a medical student has been writing about her experiences with doctor-patient relations. These stories have been incorporated in a book and the student, who has now become a doctor, frequently appears in the media. She argues that patients simply ask too much of doctors and don’t realise they are only human. She also says some kind of hierarchy is necessary.
Although I can to a certain extent understand what she says, I don’t think she realises what is the real problem. First of all, if there is a life and death situation, in which for instance a leg has to be cut off immediately or the patients will die, it is quite obvious that there is no time for discussion with the patient and the doctor just needs to act. That kind of hierarchy I can understand. The problem is that many doctors have the same approach when speaking to a patient like me, who has lived with a complex chronic illness and learned a lot about it. And then, I don’t think I ask too much of a doctor: I want him (or her) to listen to my story and take it seriously, to answer my questions (and say so if he can’t), and to involve me in his method and considerations.
A few months ago I went to an eye doctor, who was not only a professional in his technical skills, but also in his communication skills. He listened carefully to what I had to say, he took some interest in my medical history even though strictly speaking it was outside his specialism, he recognised my own knowledge because of that medical history and he explained to me what he wanted to do next and why. I wished he was my neurologist!
I can imagine being a doctor is a difficult profession, because you have to do a lot of things at the same time and make hard decisions, but I don’t think this can be an excuse for treating a patient as some kind of medical object which has to be silenced if it squeaks. Taking patients seriously and seeing them as unique human beings is part of the job.

[QUOTE=Brandy]The experience that most people here on this site have had with doctors has not been all to great, so you’ll have to just except what people say, they have every right to complain about doctors.

I have worked for doctors for over 20 years and believe me there are a lot of crappy ones out there.

Sorry if this offends you.[/QUOTE]

You didn’t offend me at all, and I think people have every right to complain about bad doctors and poor care. I was just reacting to the joke about all doctors having God complexes 🙁 It hurt my feelings – not just for my future career but for all the doctors in my family and in my life who have given up so much to help others. Not all of them are bad, that is all I’m saying.

On the other hand, this IS a frustration venting forum, so I’ll relax! :p

I know that not all doctors are bad but the bad ones definitely stand out when they talk down to you and make you feel so stupid and try to tell you there is nothing wrong with you. I know from experience that those memories stay with you and they do damage.
Nate has a really kind, caring orthopedic doc now that was referred by our nieghbor. He is very interested in helping Nate as much as he can and that is very refreshing and it makes Nate feel good, which is the most important thing.
Our primary care doctor is old and kind but doesn’t have a lot of knowledge about gbs.
He is a good listener though and wants to learn from Nate just what is going on with him. That is very important to us all.
Since I brought Nate home, we have had much better experiences with doctors than when he was in the hospital. Even the inhouse doctor was very lacking.
She hardly ever saw him, then when she did she didn’t do much for him.
We need to find more docs here, and hopefully they will be good ones.
You, having been thru GBS will most likely be very patient and understanding.
You will be a great asset to the medical field.
Nate, diagnosed 1-06-06, 2 weeks after admit to hospital
Went Home 9-30-06

Last night I was so despondant telling my husband that I worry if this is my future, then how will I ever be able to be there for him and take care of him in our old age. He started to cry – the first time I have seen him cry in 17 years.
*I am tired of having to remember to carry meds all of the time and how I can’t even teach Sunday school without my mouth becoming pasty and I have to swig water after every sentence.
*I am tired of people asking how I am and me saying ” Still getting better” (trying to sound upbeat since the real answer is depressing), then them saying “You’re still sick? You LOOK GREAT- It’s something that makes any healthy person feel good about themselves but a sick person it just confirms that people can’t feel what you are going through and to try to get them to understand you go into a mini GBS lecture on how many of us will never recover and we spend a big chunk of our income on doctors and prescriptions.
*I hate that I can’t be the mother I used to be for my child and he has to take care of an invalid from time to time instead of being out there skiing or riding a bike with his mom like his friedns can do.

*I hate not being able to travel like I used to becasue I cannot physically do more than walk 30 minutes with a cane.

* I worry that I won’t be able to send my son to the best college he can get into becasue our plans of me working full-time are a pipe-dream and I had to quit one of my two part-time jobs.

* I hate that I can’t drop these last 8 pounds that went on at Thanksgiving and I can’t exercise enough to shed them because I will physcially pay the piper for my effort by spending the next day in bed.

* I hate that what I used to accomplish in a day doesn’t get done in a week.

* I hate that my wonderful husband has to listen to my complaints about being frustrated with GBS instead of him having the spouse he deserves.

* I hate having skin sensitivity that it hurts to be touched by my husband most of the time and we haven’t had “personal relations” in more than 6 months and even then, the parts that should be sensitive are dead and the nerves that should be normal are hypersensitive that it just hurts to be touched and I think how sad that the best I can do is try to hide my pain until he can have some pleasure then hope he gets the idea to stop because the best thing he can do is stop touching my skin.

* I hate the doctors who charge so much to refill your meds and if you try to inquire about switching, they’ve already written out a refill of the old meds and won’t listen since they know more than we do, and if you bring up some new research – they dismiss it and are out the door while you are still trying to ask questions.

* I hate having my every waking hour reminding me that something hurts and the doctors are too concerned about prescribing something stronger – I’d rather have one good day a week that I can do what I need to and look forward to than 7 days of drudging through life.

* I hate that I’ve lost interest in looking forward to the future – each day is the same and tomorrow will be like today and ten years from now will be the same, so what’s the difference.

Boy I feel better. I hope I didn’t upset or depress anyone. You are all going through your battles. And I know there are mnay good and caring doctors out there who have been able to do great things – my propblem is that I didn’t meet any of them and my first neuro waited 5 days AFTER he diagnosed me to start treatment watching me become paralyzed and treating my case like a chess game saying that ALL GBS patients recover fully wihtng 6 to 8 weeks.

No Laura, you didn’t depress or upset me at all. I can only say that I feel for you and I really can relate. Just know that it is so important you can share this with your husband. It seems to me that the fact he is crying shows he loves you and he feels safe expressing his feelings to you. Don’t underestimate what you mean to your loved ones, even if you feel so useless sometimes. And your venting helps me a lot too! You are not alone.

Laura, dear Friend ~ I am so sorry for your pain, frustrations and all the other “stuff” that goes along with GBS. I am so glad that you knew that this was a safe place to vent. Most of us have been where you are and more than once!

It is a huge adjustment/life change with this disease. And it can take the mind a long time to “catch up”. It’s been 12 years for me and I still want to walk 3 miles every morning ~ like I use to. . . Trust me, I know of all the issues you speak of in regards to your husband ~ been there, still doin that, at times. Those words “in sickness and in health” ~ you and I would do for our husband if this disease were theirs. It’s part of the love picture. Not one of us knows what tomorrow holds. I am not anything like I was 10 years ago ~ GBS, getting better slowly ~ and you will to. Nerve damage can take a very long time to improve.

Here’s what my hubby did for me: each morning (or upon going to bed each nite) he would say “together, lets remember to look for a rainbow. It might be really tiny but it is there if we just look”. It became “our game”. And when a day was “really bad” for me, he would say “Sweetheart, I won’t ask you to stay around (not die) and hurt more but could we find “just one more rainbow” together, first??” And that would get me thru another few hours. We would thrill at the first tiny spring violet, or a funny antic of the cat or how the water ran down my chin and clothes when my mouth suddenly wouldn’t close! Or when I would wobble down the hallway, he’d ask “where you been hiding the vodka?” We had to see the funny, see the rainbow or neither of us would have survived!!

You can do it! and so can your husband. Invent your own “game” and go for it. You, Laura, are still the gal your husband fell in love with and married. Ya, the package has changed but time alone will do that 😮

My husband, Richard, and I wish you and your husband strength and peace as you travel this journey “together”. hugs 🙂 , Judi

Judi, what a wonderful encouragement.

Something my hubby did for me that I will never forget, was at the beginning of strawberry season 2001, and we had bought the first box, and I was so looking forward to the sweet taste of strawberries with cream and sugar. I was at one of my worst points medically, and for the first time in my life I was not able to hold the spoon steady enough to keep anything on it from the plate to my mouth. Every time I tried, the contents just tumbled down. It was such a horrendously frightening experience, I just broke down in tears. Hubby picked up my abandoned spoon, filled it with bits of strawberry and cream and said “This one is for Svein” (his name) and I just had to open my mouth while the tears were still streaming down my cheecks – “and this one is for Mosse” (the cat), and he went on like that until my tears were of joy rather than sorrow. I finished my bowl that way, and after a while I solved the problem of how to avoid “feeding my face” and hitting the mouth with something left on my spoon. (I still find it kind’a frightening to use a fork, and it becomes a hazard to my vision to try guiding a fork to my mouth by my left hand!)

So Laura, you’re not alone – and finding the “black humour” is often your life-bouy. Good luck!

Allaug,

That was a wonderful thing your husband did!

I hate not being able to sleep. Nothing works. I might sleep an hour and wake up over and over all night. I was like this when I was first diagnosed and nothing much has changed. Any ideas or others experiencing the same. Thanks.

I am frustrated and even more tired since I can only sleep about 1-2 hours at a time, I have alot of anxiety when I wake up and can’t seem to shut my mind down. I am also frustrated with a dry mouth at night and drink alot of water during night which also keeps me up. Have tried all kinds of sleep aids, pharmaceuticals, natural, music everything, nothing works. Anyone else experiencing same? I started with this during my hospital stay.

[QUOTE=Natesmom]
We need to find more docs here, and hopefully they will be good ones.
You, having been thru GBS will most likely be very patient and understanding.
You will be a great asset to the medical field.
[/QUOTE]

Not only will I be much more sensitive to people with Guillain-Barre than the average doctor, but all of my classmates and physician teachers are being educated by me about GBS, what it did to me, and what recovery has been like. Hopefully that is a whole gaggle of doctors that will make a difference for more of us.

Thanks for your vote of confidence, Natesmom!

To Laura – I totally know how you feel about the skin sensitivity and how that affects your relationship with your husband. I am having that problem too and it has been really tough on our relationship as well.

Dear bunnyrarebit,

I had the same problem, of not being able to stay asleep, my doctor prescribed amitryptaline – a low dose anti-depressant which has a benefit of assisting in staying asleep. It took a couple of weeks to work for me, but now it does work as long as I take that and a Tramadol ( which I think I have built up a physical dependance on and have anxiety attacks that will wake me about 1AM.

I hope you can find something to help you get a long much-deserved sleep.

Laura

Bunnyrarebit I would tell what I take for sleep but I’m kinda embarassed to mention all the prescriptions they have me on.
ok I’ll list my meds.
in the A.M.
diovan – blood pressure
cardizem- blood pressure and fluid in blood
nexium- reflux
allegra- allergies
wellbutrin xl-anti- depressant
150mg Lyrica – nerve pain
Soma – muscle relaxer
ultram er – pain
800 iu vitamin E – leg cramps
acetyl l carnitin 500mg- nerve repair
allbee with c – nerve repain

in the P.M. before bed
Ambien 10 mg-sleep
xanax 5 mg-anxiety
singulair-asthma
150 mg Lyrica- nerve pain
acetyl-L-carnitin – nerve repair

only as needed
oxycodon – pain
ultracet – pain

I need to mention I don’t drink alcohol at all!

bunny, i have the same problem. mine is more of a cross between being a night owl and in survival mode. i have had too many events where i wake up paralyzed and that makes me leary of going to sleep many nights. i can’t sleep when i’m by myself because of that. along with my other health issues i have become accustomed to very little sleep, on occasion i will get into a deep sleep-usually on the weekend at least once a month, when the family is home. i have tried all kinds of meds for sleeping, but since i have a high tolerance for narcotics and other meds there aren’t many that help. hope you can find a mix that will help you soon.

Hi, Nate had a hard time sleeping at first too. He would be awake til 2 or 3 in the morning.
The doc put him on Elavil, Trazadone, Nerontin and Ambien to get him to stay asleep.
It seems to work for him.
I also give him Calcium Citrate at night and he takes Vicodin sometimes if his pain is higher than normal. What pain is normal? LOL
He takes Lexapro 10 and 20 mg in the morning with Nexium, Neurontin, Multi Vitamin, B complex, lecithin,Folic Acid, Aspirin and Iron.
Geez, thats a lot of meds.

Reading the comments left by the other members made me realise that the shoddy treatment and disbelief shown by the medical profession to my 13 year old daughter is commonplace.

Since her first episode of ‘numb’ feet and ankles in Sept 06 she has been treated (or should I say seen) by our GP clinic, two different private neurologists, three ED doctors and admitted to hospital overnight with total loss of sensation in her right arm and the side of her face.

The diagnoses have ranged from ‘teenage neurosis’ , a slight case of GBS, a viral illness, obviously a physiological cause due to pattern of numbness, no physiological cause, some type of auto-immune syndrome to a recommendation to see a neuro-psychologist. One specialist told us he could not help us and stood holding his office door open until we left ($100 thank you). What these people seem to be forgetting is that my fit, happy child is now in constant pain and some days can barely get out of bed.

Our next step is to drive to Sydney, over 300km, to see a paediatric neurologist. Hopefully they will have the sense to realise that of course one can feel a toe being moved when it is that hard that there knee is jerking! Trying to explain to a 13yo that they need to say WHERE they can feel sensation not just that they CAN is also very frustrating!! How can we expect anything but disbelief when she cannot feel a toothpick but then says that she can feel a tuning fork. It was only several hours later that she said she could feel it in her ankle not her toe. AAGGH!! the doctor that we were pinning our hopes on is now also recommending a psychiatrist. We did this months ago on the hospital’s recommendation and her opinion was that she was one of the most together 13 year olds she had ever met.

Sorry for such a long post guys but once started a vent can be hard to stop!! LOL