Giving Up

    • Anonymous
      October 11, 2007 at 3:08 pm

      I know no one will want to hear this, but I have to vent my complete frustration. I previously mentioned my first Neuro who did ALL the testing and dx has left the clinic. I bounced around trying to find a new one and now the 4th one is driving me nuts. She ordered and did all the tests again>EMG MRI< ETC> and talked me into a sural nerve biopsy. That was 8/21 and it is still infected and not healing in the middle where Neurosurgeon had to dig for my nerve.She definitely dx as CIDP, which I knew before all this. She decided since my care has been so disruptive I should get IVIG 5 days, and then once a month. I have already had 9 at by-monthly intervals. Then I get a call from her office “What is it you are going to do now”> I expained I had taken Dr. rx to the infustion dept. and to begin 10/15, “OH, i will make a note of that in you chart”> ???? Next I get al call from them again “Dr. wants you to have a spinal tap” In my nice Irish Temper voice I exploded, I have had a lumbar puncture when I was dx by Dr. King last year. Why dont you look at my records, they have all been released to you. “Just a moment, I will ask her, (she comes back) “Dr. said ok,”.
      I am at a loss. Medicare has to be wondering about all these repeat treatments and tests. I dont think the Dr. really has a clue, although she says she is discussing my COMPLICATED case with other drs.
      I am pretty good except for paralysis from knees down and dropfoot in both feet and big time fatigue Think I will just sit it out, what the heck I am 68, have a power chair to get around in . Thank you for listening and say a prayer for me. THanks Regina

    • Anonymous
      October 11, 2007 at 4:56 pm

      Regina,

      How FRUSTRATING! I’m glad you put your foot down when it came to the spinal tap.. Is there anyway you could contact your old neuro and maybe ask if they know of anyone else who can treat you? (and accept all the tests that have been done too). Failing that, if you phone your liaison and ask them if they know of someone, or the foundation could be contacted to see if there is someone in the area that another patient has recommended

    • Anonymous
      October 11, 2007 at 10:45 pm

      Regina

      My heart goes out to you…it is very frustrating that a doctor wants to do the
      tests over again. Depending when you last had them, some won’t make a bit
      of difference whether you do them again…usually, it’s for the doctor to make
      the money for him/her self.

      I went to one neuro at a hospital and he referred me to another for a second
      opinion – his office was down the hall…twenty feet…he wanted to do the
      nerve conduction test again…I said no way…walked back to my neuro and
      told him that the other wanted the test again…he said that he didn’t order
      the test to be done. So, I left and never saw the second one again.

      I wouldn’t worry about Medicare…if they feel that it’s not needed, they won’t
      pay – but, you might have to instead.

      I’m at the point, as well…I have CIDP, no pain, can’t walk, use a wheelchair,
      take IVIG once a month – no more tests – there’s no cure yet – I’m alive,
      I eat well, take vitamins and supplements…so why subject myself to an
      overly enthusiastic doctor who has no clue what to do…accept it and pray
      that something will become available someday to correct it…that’s all you can
      do at this point.

      Good Luck

      Miami Girl

    • Anonymous
      October 12, 2007 at 2:07 am

      I am pretty good except for paralysis from knees down and dropfoot in both feet and big time fatigue Think I will just sit it out, what the heck I am 68, have a power chair to get around in . Thank you for listening and say a prayer for me. THanks Regina

      Regina we all know how frustrating it can be. Your right you have the power chair to move you safely about. I see people in those all the time. You know your body and situation, knowing when you are comfortable and uncomfortable. I hope that you have help shopping and going out to the movies and borrowing a book from the Library. Here we have a few companies that are equiped to pick up people that qualify for transportation. They have vans that are equiped to pick up people in wheelchairs and the power chairs. I know because I see them being dropped off at the curb to do their shopping or visit the doctors office. The fatigue is the thing that takes a good plan to pace yourself each day. It is amazing what can tire you out one day that lifts up your energy level the next day. I found that a telephone call can turn my day upside down one day and the next make me want to clean the whole house. I just go with it and pace myself. Nap when needed. I don’t worry what people think when they call and catch me napping. I work hard to get a good nights sleep, that starts my day off better in the morning. What you eat does matter. Exercise is customized to my needs. Breathing, stretching and range of motion maintains what I still have. Communication with your Doctors is important and just a reminder that you have already had that test and the results are in your records will open up those lines of communication, leaving you open lines for communication. Don’t give up on them, if you do need IVIG at some point you don’t have to repeat test then you have kept in touch with your team of Doctors. It you have pain you have someone to contact to start finding what meds will help you. From what I have been reading CIDP is always changing residuals that need to be addressed. Your number one priority is you not worrying how the doctor or their staff has to keep taking your calls and looking for new way to keep you as comfortable as they can with up to date methods. I am lucky enough to have a team of doctors that have been in contact with other hospitals and specialists for information and suggestions on how to treat myself. We all know it can be frustrating but you deserve the best care they are able to find for your case. There is a gentleman that lives a few miles away that had GBS for 15 years and he goes to rehab and lives in his wheelchair everyday. He works from his home. He is still trying to find what works for his situation. He has not given up and neither should you! Make sure you come here to vent and check what others are doing. I have found a few suggestions on here that other doctors have suggested and had sucess with and I passed that information on to my doctors to do more research on for other patients. It is a group effort and you are not alone! You have come a long way to work this out. Your suggestions, examples how you have made changes to get on with your life are amazing and will help others!

    • Anonymous
      October 12, 2007 at 2:07 am

      I am pretty good except for paralysis from knees down and dropfoot in both feet and big time fatigue Think I will just sit it out, what the heck I am 68, have a power chair to get around in . Thank you for listening and say a prayer for me. THanks Regina

      Regina we all know how frustrating it can be. Your right you have the power chair to move you safely about. I see people in those all the time. You know your body and situation, knowing when you are comfortable and uncomfortable. I hope that you have help shopping and going out to the movies and borrowing a book from the Library. Here we have a few companies that are equiped to pick up people that qualify for transportation. They have vans that are equiped to pick up people in wheelchairs and the power chairs. I know because I see them being dropped off at the curb to do their shopping or visit the doctors office. The fatigue is the thing that takes a good plan to pace yourself each day. It is amazing what can tire you out one day that lifts up your energy level the next day. I found that a telephone call can turn my day upside down one day and the next make me want to clean the whole house. I just go with it and pace myself. Nap when needed. I don’t worry what people think when they call and catch me napping. I work hard to get a good nights sleep, that starts my day off better in the morning. What you eat does matter. Exercise is customized to my needs. Breathing, stretching and range of motion maintains what I still have. Communication with your Doctors is important and just a reminder that you have already had that test and the results are in your records will open up those lines of communication, leaving you open lines for communication. Don’t give up on them, if you do need IVIG at some point you don’t have to repeat test then you have kept in touch with your team of Doctors. It you have pain you have someone to contact to start finding what meds will help you. From what I have been reading CIDP is always changing residuals that need to be addressed. Your number one priority is you not worrying how the doctor or their staff has to keep taking your calls and looking for new way to keep you as comfortable as they can with up to date methods. I am lucky enough to have a team of doctors that have been in contact with other hospitals and specialists for information and suggestions on how to treat myself. We all know it can be frustrating but you deserve the best care they are able to find for your case. There is a gentleman that lives a few miles away that had GBS for 15 years and he goes to rehab and lives in his wheelchair everyday. He works from his home. He is still trying to find what works for his situation. He has not given up and neither should you! Make sure you come here to vent and check what others are doing. I have found a few suggestions on here that other doctors have suggested and had sucess with and I passed that information on to my doctors to do more research on for other patients. It is a group effort and you are not alone! You have come a long way to work this out. Your suggestions, examples how you have made changes to get on with your life are amazing and will help others!