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Living with Polyneuropathy CIDP, GBS, & CMT

How do I find a doctor


#1

Hi everyone,

How are you? We need to find a new doctor. We live in upstate NY and we don't have the money to be traveling all over the state to find a diagnosis, which the currant doctor want to do, and if we suggest or say anything they get hostial, another doctor said that what my husband is going through is all stress related and in his head...%$#?? I'm so frustrated, I'm at my braking point. At this moment we are staying with the currant doc because with some begging we can get the IVIG that does help. Can anyone have any ideas for us.....


#2

here is site http://www.ninds.nih.gov/disorders/cidp/cidp.htm that you might find helpful. Also 7 centers for cidp i saw was helpful to another person. Did you go on this site to 'doctors'? there is lot of info on that page too.

I just would like to present another side. I personally like doctors who admit they do not know or lack that area of specialty. There are just way too many diseases in the world ..way too many ways people get sick besides disease it is just too much for any one human to kept in their heads. So actually this doctor might be doing you big favor. I had my 1st doctor who did diagnose me but than said she just did not know enough and that i needed specialist. Together we found a great one and I kept her and my go to doc for regular things, like severe poison oak, sore throats etc.

I hear how it is pain in the ass to travel but i finally now have come to realize that i too must travel 4 hours or more to find a doctor that specializes in my area. There are none in my small town and only 2 over hour away so they are now flooded and really only take time to treat those in life threatening needs.

Suggestion though, IVIG is very specific on what it is used for and gets results. Wiki has list of all the diseases it is used for regularly than at bottom others it can help. Many listed can easily be ruled out with blood work. Like HIV which he clearly does not have because of symptoms for CIDP. MS though is very real possibility ...do not get upset there are types of MS that people live great lives just need to take care of themselves. Look there and see..

They must think he has CIDP or you would not be on this site so read everything you can on only reputable sites about this disease. Like famous medical hospitals go to their libraries online and do a search. Be open minded and do not try and see your husband symptoms when reading but just list ones that you have 100% seen and can document about when it occurred, symptoms anything that might have triggered it etc.

Doctors tend to appreciate people who are well informed, not know it alls, about their diseases. I get you both are stressed and I tend to talk a lot when stressed..so write down exactly what you would like to discuss with the doctor. You might just hand him the list instead of speaking if you are too nervous and think he will not listen as well to you.

Make two lists if you do this..so you can check off things he has discussed...take notes about his answers it is so easy to forget when under stressed exactly what he/she said in the office. Just do not leave until he answers all of your questions. I let his office person know if you have a lot of questions that your appt might be longer than their allotted time out of courtesy. If he says he does not have the time...you can than point out how you did inform his office that it might take longer...and just say you are staying. Sometimes you just have to be assertive and if you are the well person it often falls on your shoulders since your husband might not be in a position to do it due to how he feels.

I get how many doctors because of their inability to diagnose it, say it is in your head. I personally would stop going to that kind of doctor but if this is same one that does give you the IVIG ...than what i would do is have your husband see a counselor...or even psychiatrist if your insurance will cover them..have that doctor refer you. Than when he gets a letter stating that it is not in your husband's head but very real illness show that doc!...just make few copies of that letter and bring it with you to any new doctors just in case.

It is very normal for doctors to want all tests etc that you have been through. This is good thing...your husband should not have to repeat them and be put through unnecessary tests. So i know that is pain too to get charts etc especially if you have many doctors or lab places.

I loved kaiser because all doctors had immediate access to all that information no matter where you went...even before computers! Plus you did not have to drive all over city to get lab work , your Pills and some places only did blood so you have to go to other labs for different tests. Wears one out horribly.

So go first to doctors on this site and post your question ...check out other sites. OOH if there is support group in your area...any disease that is similar if you cannot find one like this one , call them and ask about doctors they like etc. Some of sites i gave you should have support groups tied to them...even if out of town..find one closest to you and call them to ask about doctors.

Last thing..have your husband think about what kind of doctor he would like...such as one that works with him as partner and gives him all the info than allows your husband to choose what tests /treatments he would like to do. Or would he rather have doctor that treats him as parent/child relationship...he just tells you want to do with out any input from your husband. One thing i believe we all want...is doctor who we feel like he will go all out to save our lives. I know i have had doctors where i do not feel they would..i even had one up here in my small town did not have hospital rights lol!! so i ended up with 3 doctors in one day ..each one i had to repeat everything all over again which is wearing when you are seriously ill...so you might make sure they have hospital rights lol. I never even considered that one before.

GOOD LUCk and sorry it is so hard on both of you! sorry this is so long too


#3

Thank you for all your help..We have traveled to one hospital and they seemed to rush their diagnosis and we ruled that out with two test...But his current doctor is now confused be of they said...He doesn't have lessions on his brain or spinal cord so she will not consider MS...I could go on and on...but I will not...we have been dealling with this since 2010...I will ask her for his test records..We did get a doctors name from the nurses that they believe will help I have to convince my husband to go...he is so tired and weak and doesn't want to go to another doctor because he can get is IVIG and some type of treatment..His symptoms do not follow the text book of CIDP, GBS, or MS. I do understand that doctors do not have know every condition...but what I hate is when they act like they do and will not listen to you...exact quote.."that internet is a bad thing for people like you"....you did help alot...thanks