AnonymousJuly 12, 2009 at 10:09 pm
It has been awhile since I have posted. How many of you also had a conflict with your physician either a primary physician or neurologist about your or a loved one’s diagnosis? My son had went months without a diagnosis and the doctor’s office refused my request for a referral to a specialist. I am doing a survey so I can possibly bring more light to the conditions of cidp and gbs so that others may get diagnosed quicker and treated faster.
Joey’s mom – Michele
AnonymousJuly 13, 2009 at 9:32 am
I remember yrs ago with my mom and her doctor.He would not meet with me to discuss her problems.My mom was slowley passing away. I wrote her doctor and told him I was contacting the AMA and reporting him.
He was in touch with me within hours.
A doctor as yours needs to be reported. They want our money so lets make them earn it. So many doctors feel they have to just walk in and then do nothing.If you have choices use them (Steve)
AnonymousJuly 13, 2009 at 1:30 pm
I had no problems getting referrels. I just had to make the request and it was done, not always resulting in a good dr or even a dx, but I am able to say I have had so n so’s input. One thing I feel needs to be said is make sure you understand All the HIPPA rules and your rights, before going off on drs. It may not be as you see it when the dr doesn’t give you what you ask for. Its also a good idea to understand what your insurance says, the part between them and what your dr can do and when etc. After all those avenues are walked then by all means go off on the dr. Believe me I understand, I’ve walked those paths before and still trudging down them myself. The most important thing is to make sure you find a dr that communicates with you, that knows about cidp/gbs and who does proper treatments. You are the one who makes the final decisions, not the dr. Have a strong voice when you are advocating for one’s health. Take care.
July 14, 2009 at 1:31 am
I was blown off originally. Told I was crazy and none of my calls to the neuro were taken or returned. I waited 3 long months for a diagnosis…also 3 long months before anyone would see me. Lesson learned.
My current dr is at a loss with GBS. He doesnt know if something i complain about is a residual, my nerves over reacting, or a real concern. He has admitted this. I am going to be seeing a new dr soon because even though I like this guy, I need someone who is more willing to listen and maybe even figure out if something IS serious or not just in case.
I do agree we need to educate our dr’s about “rare” disorders and such. They seem to think that since it is “rare” there is no reason to study it or keep up on the latest research.
AnonymousJuly 14, 2009 at 11:52 am
My long story is over 4 years. My original Neuro was terrific as soon as I got in to see him when I was paralyzed from the waist down. he did the spinal tap and all the other tests, emg, etc. right in his office and dx with GBS, possible CIDP. However he had to leave our clinic, and I was high and dry with no Neuro. I traveled the area to other Neuros, and could find no one to proceed with treatments. Each one had different dx, drugs or just indifference. I was told I was very puzzeling. Tried Mayo in MN. and they decided I didnt have it at all just polyradiculoneuropathy??? Well in research this is CIDP. So I gave up, stopped all drugs (Lyrica, Cymbalta prednisone and other steroids). I stay in my power chair, due to too much pain to walk, wear my AFO’s and forget about wearing shoes.
As others have said, keep shopping for a good Doctor if you live in an area where there are choices.
BUT I now have some hope. In reading here, I found the thread about Namenda and I am going to pursue this and maybe I can be up and going again soon. Good luck with your hunt. Regina
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