I Am Taking A Poll

    • Anonymous
      September 2, 2006 at 12:21 pm

      My son was wimpering all nightt with pains in his legs. I called and asked for the neurologist on call. He informed me that PEOPLE WITH CIDP OR GB DO NOT HAVE PAINS. Tell me, am I just a dumb mom. I know my spelling sucks LOL but I pretty much know my son and I have paid attention to his doctor.
      (His doctor is on vacation out of the country, will not be back until the 10th.)
      Masons doctor told me if any of his symptoms come back he would need another IVIG. Someone help me????

      Trish

    • Anonymous
      September 2, 2006 at 12:27 pm

      Well Trish, that Dr is so very wrong. You can read so much here about the pain that people are suffering on a daily basis. My husband’s pain never went away for the 6 years he had GBS/CIDP.

      How can Drs be so frigging stupid? I’d love to bash them in the head with a baseball bat and when they say they have pain, tell them no you don’t. This just proves, that most Drs don’t have a clue about this illness. All the patients know what they are feeling.

      I think there are some who don’t have pain, but the majority of GBS/CIDPERS have chronic, severe pain.

    • Anonymous
      September 2, 2006 at 12:35 pm

      Trish,

      PAIN AND MORE PAIN. I’m sure you have seen posts to do with pain all over this site. You are not a dumb mom and I know you feel helpless. Unfortunately some doctors know absolutely nothing about certain illnesses but feel that they talk down to you with the limited knowledge that they have on the subject. This neuro sounds like he has just ignored the diagnosis that your doctor gave, without any knowledge of the history, but Im not sure if this is the case. If you feel that you arent getting any joy from him, be a pest, and speak to someone higher if there is, or insist on someone else.

    • Anonymous
      September 2, 2006 at 12:39 pm

      Hi,

      Is he, or has he been on any pain meds? If so, you point straight to his medical records and ask the doc to explain that then. Then say the line, are you over ruling my main doc? Now you got their attention, and that little brain starts to think of ramafacations and so on. Pissing off a fellow doctor is the first thing that enters their mind when hit with that. Now, it’s which doc is the fool. They don’t like going there. If not, the doc is looking at med records thinking why now, why not all the time before this point? He/she is relunctant, as a subsitute, to add anything to an already existing case, outside of what’s already been done. They, as a subsitute, add something out of request, they now are involved, and partially responsable, in your son’s case. Thinking of ‘their’ well being over time, and not your son’s. A doc who has a practice, usually has someone fill in for them when absent, like another doc within a family practice, where mulitpul docs are working, or if a single doc practice, they will have someone they trust, for patients to call while gone. Is this who you saw? If not, then that’s the first place to start.

    • Anonymous
      September 2, 2006 at 12:39 pm

      Trish,

      That doctor is absolutely WRONG! I spent months on morphine/dilaudid because that was the only thing that would control my pain. Get another opinion if this doctor is not addressing your son’s needs. You have a right to ask for another neurologist to come give a second (or third) opinion. You may have to demand treatment, talk with the chief neurologist, hospital director, etc. My experience was if you didn’t demand treatment you wouldn’t get any because the doctors/nursing staff assumed you didn’t need it unless you were really complaining.

      By the way, I am on the road to recovery and I [U]still[/U] have pain. I hope you are able to get someone to listen to you and get some care for your son. Best wishes…

    • Anonymous
      September 2, 2006 at 12:44 pm

      Trish,

      At the GBS/CIDP Symposium this year, there is workshop on how to manage pain given by Dr. Parry. Would be interesting what this neuro would have to say about that :rolleyes:

    • Anonymous
      September 2, 2006 at 1:03 pm

      Hi agin,

      To add to Ali’s post. Be prepared next time, say nothing, and hand them an invitation, with that workshop highlighted. 🙂

    • Anonymous
      September 2, 2006 at 1:40 pm

      [COLOR=”Purple”]Hi Trish, You are not dumb! You are a caring, loving mother looking out for the welfare of her child. This interaction you had with that “doctor” is but another reason I can accept having to give up my nursing career. He knows there is pain with GBS/CIDP, he just didn’t want to deal with it ! Like Racer13 said, Your child is not his patient and as an on call doctor he doesn’t want to take responsibility for him. I’ve seen it hundred’s of times over 30 years, when I would be the one calling the on call doctor about one of my patient’s and they would say “he can deal with it tomorrow”. If I felt I needed something now, I would harass him or call the primary Doc if the patient had one. Having pain with GBS/CIDP is like having snot with a cold-it’s a given. (not a pretty image,I know). Don’t ever stop advocating for your child, or yourself. Make sure your usual neuro knows what happened with the on call MORON. Take care, Vicki………..P.S If his symptoms continue while your doctor is gone, call another doctor in that group if there is one, or your primary care doctor. If you were told he needs IVIG again and things worsen, then he needs it sooner than later.[/COLOR]

    • Anonymous
      September 2, 2006 at 2:50 pm

      Hi,

      As Vickie pointed out from her inside position, I observed first hand as a patient real soon in my 10 months in hospitals. Even remarked to doctors “Isn’t there any of you who are consisently working here? Seems like everybody is just a subsitute around these places.” Worse with nurses, because administration screws with the scheduals so much, I asked them “Doesn’t any nurse just work a 5 day a week, 40 hour job around here? I need consistency, not a retraining exercise every other day.”
      Once this mess gets straightened out, have a talk with your regular person, and set up a plan, or person to see who both can trust, for times just like this. Make your doctor the tip of the responsability spear in your care, weather on vacation or not. They should glady help you with that.
      My whole hardship from day one in the healthcare system, and outside too since on that side, has been bridging human nature to get results, which has absolutly nothing to do with needed medical care. That’s just sitting there waiting to be taken and used, but getting a doc off their butt to get it, or find it, was the most frustrating. Why I frustrated so many doctors along the way, because I turned their own anilitical, let alone ego thinking, back on them in my approach and methods. Made them prove to me there isn’t another option and so on. Never ending battle. One human nature thing that everybody subconciously thinks, including me, when asked for something is, what’s in it for me. We don’t conciously think that, but its there. I could go on for hours on that subject, but I shall stop there.

    • Anonymous
      September 2, 2006 at 4:37 pm

      Trish,

      What Racer said about human nature is a really good thing to remember from now on as you deal with the medical machine.

      Do your best to figure out how to make it in the best interest of the person you are asking for help, to provide it. Sometimes, as Racer says, this may mean getting them to think about what hassles or repercussions they may suffer if the DON’t help you or your child. Direct threats are not necessary, but implied ones sometimes can help you to get action.

      Don’t wait – if you child says he’s in pain, believe him. He is in pain and there is usually no objective way to prove it or to measure it. He’ll have so many others along his way to recovery who won’t believe him. He needs his mother to be someone who will believe him and will be his advocate.

      Best wishes for your son’s quick recovery.

      Suzanne

    • Anonymous
      September 2, 2006 at 11:30 pm

      trish,

      here is an article written by the same dr. parry. your doc is not familiar w gbs, only knows what he reads, & has the potential of doing harm to you & yours. worse yet he is not even aware of it. take care. be well.

      [url]http://www.gbs-cidp.org/forums/showthread.php?t=40&highlight=parry[/url]

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      September 4, 2006 at 11:51 am

      Trish

      Sorry for taking so long to respond but everyone has steered you right. Tell your Dr to call me and I will be more than happy to explain his near ignorance. It’s Doc like this that really set me off. This always explains why they say “a practicing phsician”….practicing means they don’t always know. I use to be in the medical field (mobile diagnostics) and I always said…

      “do you know what the difference is between God and a Neurologist? God doesn’t think he is a Neurologist”

      *ba dum, dum* (cybal crash)….Thank you very much, I will be here all week, don’t forget to tip your waitress. :p

      Stephen

    • Anonymous
      September 4, 2006 at 12:35 pm

      Amen Stephen! 😀 Would have laughed out loud if it wasnt so sad in a way.

    • Anonymous
      September 4, 2006 at 12:59 pm

      I want to thank everyone for your help. I emailed his Doctor yesterday and he replyed today. He told me whom to call, and he also wants more blood work. I also emailed him Masons diagnosis from his biopsy.

      Mason is doing better today. Last night was his first night with no pain. He woke up his head and stomach did not hurt. I am almost scared to say he is doing well out loud, I never know when it is going to hit him. He does have to new complates, He keeps saying he fills like he has a hair in his mouth. I have looked and I don’t see anything. This has been going on for over a week. He also complains his back itches. I am just watching him very careful.

      It is hard for me to express my feelings to all of you. We have had a very hard year, when this happen to Mason I felt like I was in a bad dream. I have six kids,only three live with us and a Mother Inlaw living with us. Someone told me the other day to just Praise God all the time. I have been doing it. It has helped keep the negative thoughts of what could happen out of my mind.

      I just want to thank you for being here and letting me know I am not alone, If it wasn’t for you guys and Dells Mom I don’t know what I would to.

      Thank You from the bottom of my heart

      Trish Masons mom

    • Anonymous
      September 4, 2006 at 9:10 pm

      Take care of yourself too Trish, my prayers are with Mason and you all.

      Jerimy

    • Anonymous
      September 11, 2006 at 1:45 am

      I remember blankets, any touch at all — was off the charts painful. Have you tried experimenting by placing a cardboard box, carved out in such a way that it allows your son’s legs clear passage, but holds the blankets up off his skin? This suggestion is in addition to what others have said. I hope this helps.

    • Anonymous
      September 11, 2006 at 1:53 am

      I remember blankets, any touch at all — was off the charts painful. Have you tried experimenting by placing a cardboard box, carved out in such a way that it allows your son’s legs clear passage, but holds the blankets up off his skin? This suggestion is in addition to what others have said. I hope this helps.

    • Anonymous
      September 11, 2006 at 9:57 am

      No I have not tried that. That is a good idea, thanks. He has been better last week. I am almost scared to say that out loud!!!