Moving from CA to TN with CIDP–very nervous

    • Anonymous
      May 31, 2009 at 7:44 pm

      Hi everyone,

      This is my first time posting something, although I do keep up with the forums and am so pleased to have found a community like this!

      So real quick about me: I was diagnosed in Aug 2007 with GBS (as I’m sure most of you were) after months of being in and out of the hospital the diagnosis was changed to CIDP in Dec 2007 (5 days before my birthday–nice huh?) I’ve tried both IVIG and pheresis multiple times with minimal results and less than desirable side-effects. I get horrible aseptic meningitis that puts me out for days at a time after IVIG. I also don’t do well with the perm-a-cath necessary for pheresis so they can’t leave it in for more than a week at a time which means repeated painful insertions for treatments that aren’t all that helpful. I’ve been on several medications, currently CellCept and am tapering off of prednisone due to bad side effects.

      I consider myself lucky, though, because I’ve gotten to the point where I can go about 16 weeks without needing in-patient treatment (IVIG or pheresis). I never have regained full strength and have bad days, but I’m walking on my own again and generally live with the attitude that I’ve got too much going on in my life to be sick right now–which hasn’t been all that bad.

      But here’s the question: I currently live in California and have lived here since being diagnosed. I have an incredible neurologist here and finally feel like I’m in a place where I’ve got my team set and can get whatever help I need at the drop of a hat. But, I’m going to be moving to Nashville, TN in a few months so I’ll have to start all over there. I found a doctor through a google search but haven’t met him yet. I’m really nervous about getting established there–treatments, medications, etc. I had a hard time getting people here to “get it”. Does anyone have advice on how to switch doctors, hospitals, etc. with such a rare illness? Or does anyone know anything about Nashville neurologists? Anything would be great, I’m so nervous!

      Thanks everyone! My prayers are with you all! (Typing this out made my arms tired, but knowing everyone is in this together somehow makes it all a little bit easier!)


    • Anonymous
      May 31, 2009 at 10:52 pm


      I have become a patient who tries to get copies of my records from Dr. visits and hospital stays. I hope you did as well. Prepare a set of these for your new neuro and be familiar with them yourself. That way when you have your first appointment you will be able to make good positive headway with your new Dr.

      If you do not have your records, ask your current neuro for a copy. He should provide them for you. Tell him who your new neuro will be, and ask him to be prepared to send a copy of your records to him(or her).

      If you have a good treatment regimen, explain it to your new neuro. I would hope that the new neuro won’t want to go through all of the tests again and try for a re-diagnosis. I had one who wanted to believe he could figure me out better than the one before. (he was wrong, I was right)

      I think you will do fine. Remember, being an informed patient is your best asset.

      Dick S

    • Anonymous
      June 1, 2009 at 7:23 am

      Hi Carly! Before you move! Like Dick S said make sure you get all of your medical records. Even the ones from the hospital, regular primary care doctor and Neuro. I didn’t have my records when I moved to NC because of a family member getting sick and got stranded herein NC caring for my mother. And when I went to see a doctor about my condition and told him about my records he didn’t seem to care and did totally nothing for me. I ended up making a trip back to my other home and had to get those records. It was horrible experience for me and I paid the price doctor shopping for 7 years! So whatever you do top priorty is getting those records. And make sure you make an extra copy for you to keep just in case you need to switch doctors. Always keep an extra copy on hand for yourself also. And never give up that extra copy for you may need it in the future! Good luck on your move! Another thing you could do is ask your doctor’s office to contact this doctor ahead of time trying to get your appointment scheduled with him. Some doctors have a waiting list of 8 months. So by getting this appt already prescheduled that gets you ahead of the ball game without you having to wait a long time getting no treatment. The doctors will be able to discuss a company for you to get your meds and can let you know in advance whom to contact. That is my best advice I can give you. If you follow my rules… LOL! Then you might not have any bad experiences like I did! Good luck with your move! Hugs
      Linda H

    • Anonymous
      June 1, 2009 at 10:41 pm

      Dick and Linda, do you get copies of progress reports, labs, etc after EACH appointment for your own personal records or is that being excessive? I have everything now but how much do you recommend keeping up with my file? What is it that the doctors need when you move from doctor to doctor/hospital to hospital that causes such a hassle that I should prepare myself for?

      Thank you both, I can’t believe I hadn’t thought of records! eeek! I’ve got my huge stack of records now and have had an email conversation with the new doc who knows I’m coming. He has even reviewed the records my neuro here in CA sent him. (I guess everyone else was more on top of it that I was–unnecessary freak out!)

    • Anonymous
      June 1, 2009 at 10:48 pm


      I request copies of appointment notes, major test results, physical results etc.

      If I have a complete blood workup I get a copy, but if it is a liver function test, or just a check for something I do not.

      EMG, biopsies, diagnostic tests, MRI’s, CAT scans, X-Rays, things like that I try to get. Mostly they are provided free.

      My purpose is to keep from having to go through these same tests over and over again. In this time, pressure is being put on Dr.s to keep costs down, but I don’t want an uninformed Dr. making decisions about my condition.

      Sounds like you are right on top of the situation. Remember Communication is KEY

      Dick S

    • Anonymous
      June 2, 2009 at 7:41 am

      Hi Carly! I basically do the same thing Dick S does! You just never know when you might meet a doctor that don’t send out all the test and records. Have had one do this already.
      Plus if you need a primary care in TN where you are moving they too need a copy of records.
      Carly! Something you need to prepare for that I hope helps out!

      When we meet a good doctor that treats us we develop a relationship with them. The doctors I had in PA, I was very grateful to them for saving my life many years back. I could talk to them and tell them my life history. Even tell jokes! I felt that comfortable with them.

      Then I moved and instead of letting them refer me I chose the closest doctor we had around in my area. I have learned something and a lesson with it! Not all doctors have the same personality. And when I saw this first doctor he had an attitude and we did not hit it off at all. We clashed big time! I left his office and came home crying my brains out for moving away from my good doctors. Each one practices different and no two are alike.

      I have met some with attitudes, some that were non caring and some that I felt rushed out the door and was seen quickly. Each doctor I have met I was looking for the same doctor I had in PA. Then I realized that I won’t have that type of doctor. I shopped around and finally found 6 good doctors for my needs. But it took me 7 years! LOL!

      I was getting so depressed! And my husband saw me crying alot because I could not find the right doctors! It was frustrating.
      When you walk in to see this doctor in TN. Be prepared to except him and give him a chance and don’t expect him to be like the doctor you see now. But try to get to know him and don’t say that your other doctor did this and did that and why are you doing this or that! Just let him slowly get to know you and you try to get to know him and realize that he is another person treating you!

      You will miss your other doctors at first but in time things will get easier! Hugs
      Linda H

    • Anonymous
      June 6, 2009 at 9:40 pm

      Hello Carly,

      I use plasmapheresis very successfully. Did the problems with the catheter keep you from finishing a full set of treatments? If they did, let me encourage you to try it again. There are very types of catheters and it may be worth trying them again. Let me encourage you that they can work and not be too much of a burden. I have had my catheter nearly 3.5 years, with no infections and no significant clotting.

      Godspeed in finding a truly effective treatment,

    • Anonymous
      June 6, 2009 at 11:24 pm

      Carly, I am in a similar position. We will be leaving Colorado in 3 weeks moving to Seattle after a long road trip visiting kids and MIL. I’ve been doing what Linda and Dick are recommending, copies of doctor’s notes, blood tests, MRI, bone marrow biopsy etc. I’ve been seeing an oncologist for 2 years every six months but I only requested copies for the last two visits. They are almost identical except the last one mentions our move. They even mention my neurological and all other issues. My file must be an inch thick but I did not think it was necessary to request all of it. No new doctor wants to read all. If he/she needs more info they can request it. I do have some essential copies from my neurologist I have not seen for a year. Nothing from my primary doc because that would not have added anything important in my case – and besides, I did not like him.

      Good Luck with your move. Don’t worry, be happy.:D

    • Anonymous
      June 7, 2009 at 7:56 pm

      Carly, Tennessee is beautiful country; I lived in Bristol 1 1/2 years. Enough of a hello.

      In that mound of paper from the doctor’s office notes, everything Dick Ens and Norb said were plenty of good advice. I was just thinking you could make a list of your progress-how bad it was in the beginning, your progress through the last two years, and how much better, if any, you feel now. That will at least give the new neuro an introduction. He will know you through the paper work he has already, but I think it is nice to have a quick note to tell him how you and your body feel.

      I always take a list of questions, concerns, etc. with me on each visit-each doctor knows I am not leaving the office till everything on my list has been addressed. Write things down and be prepared.

      Best of luck to you Carly.

    • June 8, 2009 at 3:48 pm

      I don’t know how good you veins are, but if they are good, you can have PE with veina punctues rather than relying on a cath. I had failure with 5 caths, but have successfully had over 100 PE’s with needle sticks as often as weekly, over the past 4 years. At the end of the PE I get 500 mg IV solumedrol with loss of sleep for 1 night the only side effect. As an alternative, I have also had pulse IV solumedrol infusions, usually 1 gram three days in a row, once a month in place of oral prednisone, when I was off PE. Don’t know if any of this is an option for you, but thought I would let you know my PE success without a cath. Good luck.