New Here w/ questions regarding husbands CIDP

    • Anonymous
      July 6, 2006 at 2:38 pm

      Hi, I am new to this forum and had questions with others who are being treated for CIDP. A little about my H, he was diagnosed with cidp in February and it is a presumptive diagnosis. He had the emg and nerve conductions which came back borderline normal, f-waves prolonged. Spinal tap showed quite elevated. He has weakness and numbness which started out tingling in his legs and arms. His legs are atrophied. He has difficulties walking. Right after he was diagnosed the neurologist started him on ivig every 3 weeks. After the 4th treatment he was improving, he had more strength. His neurologist sent him for a second opinion and he also said cidp was most likely. Then the treating nuerologist said he wanted to transfer his care to the other neurologist because he goes out of the country alot and wasn’t available for emergency care. When he transferred to the other nuerologist he said he will not do ivig every 3 weeks, put him on imuran and 20mg of prednisone. He will only do ivig when he has noticable motor loss. He has had 2 ivig treatments 5 weeks apart and has gone down hill. His nuerologist will not budge on this. He has only been on imuran a little over 1 month so it hasn’t started taking effect yet, if it will. It is quite obvious that he needs the ivig every 3 weeks. We have called several other nuerologists in our area and none are very familiar with treating cidp. His dr. is having him go to the university in st. louis to see what they have to say but we asked if he will follow whatever their recommendation might be and he said he didn’t know. We have to travel there and it’s going to be expensive. He says ivigs are too expensive to be given every 3 weeks and should be saved for life threatening situations. So it’s ok that someone can’t function from day to day. Does anyone else have this simalar treatment and has it worked for them, such as imuran? Any advise would be appreciated. Hiswife

    • Anonymous
      July 6, 2006 at 6:09 pm

      I only have a minute here but I wanted to tell you that you need to get your husband FAR FAR away from that neuro. To wait for a patient to relapse is wrong & dangerous. Every time someone with CIDP has a relapse more nerve damage is caused. Nerve damage can lead to muscle damage & that is NOT good.

      You need to get him into any other neuro that will see him. Even if they aren’t familiar with CIDP they can still treat him. They will just have to do a little research.

      My daughter is 4 years old and gets IVIG twice a week. If she goes longer than that her right eye gets paralyzed. I cannot imagine waiting until that happens to treat her. That is just absolutely insane.

      If this is the way that the neuro wants to treat the CIDP then I don’t think that he really knows all too much about it. Your husband needs a new dr ASAP.

    • Anonymous
      July 6, 2006 at 7:04 pm

      Hi and welcome to the site. I am sorry your husband has CIDP. You will find lots of info, support, and new friends who care here. I have read your post several times now and finally feel ready to respond now that my frustration is down to a level I can tolerate. I can only imagine how frustrated YOU must be. I have worked with doctors 30 years and it never ceases to amaze me how ignorant some of them can be! You would think that a doctor who specializes in a specific system of the body would have a significant amount of knowledge about that system and the diseases that affect it. I totally agree with emily’s mom that you need to dispose of that so-called specialist NOW. Your husband needs IVIG sooner than later. If you can tell us where you are there may be a member here who lives in your area and could help you out as far as another doctor goes. I live in Topeka, ks. about 6 hours from St.Louis. They do have excellent specialists there. The problem is your doctor will probably not follow their advice. Please stay in touch. I know you will be hearing from others. You are both in my prayers……..Vicki

    • Anonymous
      July 6, 2006 at 8:39 pm

      Thank you for your replies. We are trying to find a new Dr. but no one seems willing to want to take him on as a patient and we keep getting referred back to the same place we are currently at. There are several drs within this clinic and there is another dr that has been referred to us several times but you can’t just change dr’s within the clinic, it has to be authorized through management, were afraid if we do this it will piss off his dr and we will burn our bridges with anyone there, then we will have no one. We are in the Portland, Oregon area. I am still continuing to call more dr’s on our insurance plan and hopefully we will find someone very soon. Does anyone get disability? We have applied but haven’t heard anything it takes a long time. Thanks again, anymore help will be appreciated.

    • Anonymous
      July 6, 2006 at 9:36 pm

      Hello again. I certainly hope you are able to find another physician within your insurance plan soon. As far as disability, I applied in March and received my first denial in 90 days. My lawyer in Kansas City used to be the senior attorney for SS. He told me to expect at least 2-3 denials. He also said we can win the case but it will probably take a year. It is extremely helpful to have a disability lawyer. After the first denial, they took over with the correspondance and everything. Most, like mine, don’t get paid unless they win you the case. Good luck…Vicki

    • Anonymous
      July 7, 2006 at 8:42 am

      This is the name and phone number of a person who might be able to help you. He is the liaison for GBSFI Foundation in the Portland, Oregon area. His name is
      Ed Arata
      14225 SW Rochester Drive
      Beaverton, Oregon 97075
      (503) 646-5585

      Hang in There.

    • Anonymous
      July 7, 2006 at 9:49 am

      I recommend you go to the website of the company who manufactures the IVIG that your Dr. will prescribe. Each pharma has a program where they will supply the IVIG for free to people without insurance or for a reduced cost in other situations. You can check out (link deleted by administration) also for information on other programs.


    • Anonymous
      July 7, 2006 at 9:52 am

      Dear Hiswife:

      Three neurologists in the Portland area who I would trust are Dr. Cabasco of Northwest Neurology, Joseph Phelps who works out of Willamette Falls, and Dr. Zimbrano of Keizer on Sunnyside. All three of these doctors have experience with GBS and they have a rare quality in a doctor. If they don’t know an answer, they won’t pretend that they do. They will invest their time and energy to find the answer. I hope this helps.


    • Anonymous
      July 7, 2006 at 10:05 am

      Hello again,
      I WOULD TRY TO CONTACT ONE OF THE DOCTOR’S THAT LEE SUGGESTED and if by chance they are ones you’ve already spoken to, this is something else you can do to find a neurologist who will work with you:

      (link deleted by administration)

      go to the bottom of the page, look for FIND A DOCTOR. When you put in Portland, Oregon, a listing of 70 neurologists comes up.

    • Anonymous
      July 7, 2006 at 10:46 am

      Thank you for all your help. The Doctors that you suggested are not covered on our insurance. I will go to the website that you suggested and see if I can find anyone else. I called the clinic that he is being seen at to try and switch to another dr whom has been referred to us numerous times but they said that the clinics policy is that you can not switch within the clinic or get a second opinion within the clinic unless the doctor suggests that. I am waiting for a call back from the office manager. I hope they will allow us to be seen by someone else. Thanks again hiswife