I think I have lost my MIND!

    • Anonymous
      January 9, 2008 at 2:13 pm

      the hospital has lost my records of my diagnosis of CIDP and my EMG results from MAY 2007!!!!!! I have now had to redo my EMG which was yesterday and recieved a copy which they now say are normal which were NOT in May. I am no better actually worse because I have had to resort to going from a manual chair to a power chair a little over a month ago after thefiasco with the neurologist who abandoned me in the hospital after only one bag of IVIG and instead of the 5day stay for the loading dose I ended up there for 12 days in awful pain and an infection they caused and now want to charge my insurance for including 32 spinal taps even though the neuro never did one and the anestesiaologist(?) was never able to get into my spinal cavity to do anything. Now my new neuro put me on a solumedrol infusion for 5 days 1 gram a day staring xmas eve. I did notice a small change in my left arm that it did not seem as numb but that was it. Next week I go and will be put on a higher dose of cymbalta since lyrica made me ill before getting to the dose needed. All they have done here is make me worse and we cannot afford to go to Minneapolis because of all the costs we have incurred from this whole situation this year. I am to the point of just giving up and resolving myself to the fact I will be like this the rest of my life. I am going to raise hell today with the hospital administrator because I have had it. we recieved a bill through collections that I have never recievedfrom Nov but they already sent it straight to collections? something is very wrong with a whole lot in the last three months it sems like my hospital fired everyone and restarted with all new incompetent idiots that do not comunicate at all. 12 days in the hospital and every shift change I was asked if I could walk to the bathroom. SURE THAT IS WHY I HAVE A WHEELCHAIR DUH!!!!!!! The solumedrol was not pleasant but at least this neuro tried something until we could get the EMG redone but now I am afraid she will not continue n with anything because of the results they have. This is not in my head as they like to blame because I do have those resuts to back it up because I am not crazy. The only thing they found was there was some median neuropathy in my left arm but they only checked my left leg and arm. I have no use of either leg and numbness and tingling pain in left arm and the weird pain shooting and tingling in my right but no numbness or weakness yet in that arm. Everything else they tested was negative and now this I am ready to give up and to top it all off I was denied disability even though their own doctor put me down as fully disabled. Thei reasoning was that I could still use my arms but that was back in may My husband has to help dress me and shower me wash my hair etc because I cannot anymore. Because of the fentynal and lorecet and the fibromyalgia I have now memory anymore mostly short term but alot of things in the past I can’t remember anymore who would hire someone that used to be able to balance the checkbook without a calculator in less then 5 minutes to using a calculator and taking 3-4 hours. I am pretty sure that this is the time to just give up and either adjust to not having much of a life and pray that I just dont wake up one morning. I think I lost my fight after everything I had to fight for with my son’s medical for the last 16 years I don’t have it in me anymore I am just to tired and in way too much pain and nothing is getting better. Sorry guess I am starting to ramble. You are all a great inspiration and I wish I had just a little of the fight you all have but I just don’t have the energy anymore. Thanks for listening and trying to help me as much as you all have.

    • Anonymous
      January 9, 2008 at 3:39 pm


      I am so sorry to hear you are having such a rough time. Please dont give up. I know how hard it can be…I know how frustrating, depressing, and difficult it can all be and I dont have near the limitations that you do.
      We all have bad days. Sometimes bad weeks and months. Take it one day at a time and try to believe that tomorrow can only be better.

      It sounds like you have a wonderful husband…you are lucky.

      If you are losing the strength in fighting for yourself…fight for your husband and your son. No matter what you think, they need you.

      I wish there were more I could do and say.

      I have had a very rough spell myself but nothing near what you are going thru. There are days I just want to run away or just go to sleep and not wake up…but then I simply look around and realize I have an incredible little boy that really needs his mommy. I have a husband that loves me immensely. I could never give up as long as they are here. Selfishly, I would never want anyone to take my place with either of them.

      My mom is very very sickly and I dont know how much longer she will be here. I have to stay strong also for her.

      Sometimes it’s very hard Jody…but dig deep and you will find just a little more strength than you thought you had.

      Chin up my friend and if you need to talk I am here as are many many other very wonderful folks on this forum.

      hugs to you.


    • Anonymous
      January 9, 2008 at 4:44 pm

      What a horrible time you are both having. Please do not give up. it is in reading your words, troubles, and solutions that give the rest of us the strenght to carry on and have hope.
      Will pray that God leads you to a solution soon in regards to records and MD’s.
      I know how frustrating and emotionally upstetting it can be for a husband to do almost everything for you. Mine has to do a lot for me and i find it hard to accept and hard to find myself in this place health wise.
      will pray for you

    • January 9, 2008 at 5:09 pm

      Dear Jody,
      I am so sorry things are going badly. Maybe you can call the foundation and see if one of the docs on the board can intervene and consult with your doctors. The solumedrol sounds like a good start. Is there any way to insist on ivig in conjunction with the solumedrol? Have you gone to the ceo of the hospital? If you have and there has been no recourse, write a letter and threaten to go to some one higher than the hospital. I don’t know who that would be, maybe the medical board in your state? Perhaps someone else will respond with a proper agency you could contact.

      Regarding your disability denial. I have read here that several have been denied the first time, but tried a couple more times and eventually were aproved.

      Maybe you could just show up at the hospital and demand to see the ceo or whoever and tell them about the bills, lost tests, botched spinals etc. They can’t deny your condition or your issues if they are staring them right in the face. Just tell them you want help, and tell them they owe it to you!

      I will pray for you this evening with Kevin. We will pray that you get the help and courage you need to face tommorrow.

      Dawn Kevies mom

    • Anonymous
      January 10, 2008 at 8:36 am

      I feel so sorry for you and I know what you are going through. I retired from a hospital and one thing they fear is the news media. and the media loves to get info about a bad hospital. Another thing hospitals fear is the AMA American medical Assosation.
      If I was you I would get in touch with your local newspaper and TV station. Also contact NBC,CBS,ABC and I bet one of them will jump on your problems.What you said about your hospital is the way so many are. But people are afraid to report them. I was blessed as the hospital I went too was the one I worked at and they are one of the best. I have you in my prayers and PLEASE do not give up. Remember the hospital is there to serve YOU. Trust me you go public with this hospital and they will be on their knees wanting to please you (Steve)

    • Anonymous
      January 10, 2008 at 8:58 am

      [FONT=Georgia][SIZE=3][COLOR=purple]I think I’d be filing Negligence complaints against that hospital, here’s one place to start. The AMA [URL=”http://www.ama-assn.org/”]http://www.ama-assn.org/[/URL] , I’ve already had problems with negligence in one particular hospital. In 2000, one hospital failed 4 times to diagnose, what was wrong with my wife. They kept going from one thing to another, what was actually wrong with her. [/COLOR][/SIZE][/FONT]
      [FONT=Georgia][SIZE=3][COLOR=purple]She had a diseased gall bladder that was 3 to 4 times larger than what it should be. It’s very funny to me that a different hospital found out in 45 minutes, using an ultra sound what was wrong with her. The negligent hospital supposedly did the same test. I blame that hospital for all her problems, shortly after the surgery. She came down with the GBS that literally destroyed her.[/COLOR][/SIZE][/FONT]

    • Anonymous
      January 10, 2008 at 11:16 am

      thanks everyone for your support and replies! I wet to the meeting I requested with the administrator yesterday and they were given a short period of time to take care of certain things. If not I have talked to a couple of attorneys about the negligence but you know how hard it is to get a case going. I have always gone to this hospital ever since it was just Bismarck hospital now it is MedCenter One but I have never had a problem like this even though my sons medical issue is even more rare than CIDP. They were always excellent with him. I gave them everything that I knew to be wrong since this all started and now they are finally going to try to get to the bottom of it supposedly. One of the three in the room did not look happy ince she was the one I spoke to while still in the hospital but gave me the run around and nothing got done. I am going to contact the board of medical competency about the doc who screwed up. I think he definitely needs to be looked into. I had to do that with a doc years ago, a pediatrician and the hospital let him go and he moved to texas and about a year later his license was revoked for malpractice. I am tired though and if this doc does not go ahead with the IVIG after the fact that there was a very small improvement from the solumedrol I dont know what I will do. There is only one other hospital in our area and that had od’d my son twice and my dad walked out of ICU and they didnt know where he was. Not very reasuring but my hospital it just feels like they fired everyone about 3 months ago rehired and nobody communicates with each other. several docs seem to have the attitude that they know everything and you are not smart enough well I jut keep reminding them that what they do is called a PRACTICE for a reaon because they do not know everything and should always be learning especially from their patients. some get some dont but eventually we hope they do get it. CIDP is so confusing because of the varied symptoms everyone has but yet still a commonality that enables us to understand the suffering and frustration of dealing with it. There are still alot of days that when I wake up I think why did I have to do that? I dont want to wake up most mornings because I know the pain and problems getting around I will have to deal with all day and it is exhausting. Seven years ago when I went through GBS I hated coming out of the hospital with a walker but now I would be over the moon if I could get around with one. Everything you all say makes sense in my head but I think my brain is on overload and it just seems like everything is complicated. I did check out the website about the normal EMG and emailed it to my neuro hopefully she looks at it. Her Nurse Practitioner graduated high school with me and I see her on Tuesday and will mention it to her to make sure the doc does read it and hopefully we will retry the IVIG with the solumedrol and maybe there is a shot that I will be able to walk again. We will see. Sorry I am longwinded again today but thank you all and my prayers and thoughts are also with all of you. Thank you!

    • Anonymous
      January 10, 2008 at 7:21 pm


      Just another one wanting to give you a hug. This all sucks (period). My family is currently involved in a law suit for medical negligence with my father that died almost 2 years ago. There is tons of documentation needed to this point with the attorneys, but I am keeping my faith that we will win. It is obvious that the hospital purposely didn’t document somet things like letting him sit on a bed pan all day long – over 6 hours. Anyway, during my father’s dying I almost completely lost it myself with trying to keep up with him and then myself going down. I so wish I could get SSI, but know that since I can work some, I won’t qualify.

      I guess you got me rambling some – which this site is perfect for. Lots of good listeners and I know as I have been here for years. Almost 11 years for me…

    • Anonymous
      January 10, 2008 at 9:07 pm

      Hugs from Iowa to you Jody! Nobody should have to go through all that. I hope you get your IVIG and that it works MIRACLES for you!!