Who is responsible to inform and educate doctors about CIDP?

I agree that there is often unnecessary delay in correct diagnosis and treatment, which sometimes can result in irreversible damage to patients’ health. In my experience, physicians are much more familiar with GBS than CIDP, which makes sense, given how rare CIDP is.

Besides its rarity, CIDP is also difficult to diagnose because its symptoms vary so much from patient to patient, and resemble symptoms of other illnesses and conditions. Even neurologists who are quite familiar with the disease sometimes have difficulty diagnosing it correctly.

ER physicians have it especially tough. They are often overworked, and are presented in an acute care setting with a patient who is exhibiting symptoms that could be of numerous medical conditions. Additionally, these ER physicians rarely have a comprehensive medical history on the patient, and lack test results (comprehensive blood testing, MRIs, lumbar punctures, nerve and/or skin biopsies, EMG/NCVs, etc.) that are necessary to arrive at a correct diagnosis.

I’ll never forget my family physician, after having me undergo a battery of tests, sitting in an examination room and telling me he didn’t have a “F-ing clue” as to what was wrong with me. Talk about scary!

Physicians, especially family physicians and ER doctors, necessarily have to concentrate on being familiar with medical conditions that are common to the general population. I have educated my family physician as to my condition, and I believe he will be much better prepared when his next patient complains of CIDP symptoms. We all need to do that with our own physicians, be they generalists or specialists. We also need to get the word out through organizations like this one. It also helps to spread the word amongst family and friends. The more people who know, the better.

To answer your question, it is up to us to educate as many people as we can. After all, we are the ones who really care, and stand to benefit.

I still remember an article I read in the Neuropathy News published by the Neuropathy Association. Essentially, the article was an appeal to neuropathy patients. It went something like this, ‘…how can we go before Congress and request funds when most of you won’t even join our organization? If we don’t have a strong membership base we cannot convince Congress there is a problem.

This is what I remember, not actually what was written.

What can you do?

1. Join up, get a membership-
“[I]ABOUT US: OUR PERIPHERAL NEUROPATHY MISSION

Our mission focuses on helping and healing people with peripheral neuropathy. Because our mission encompasses providing neuropathy awareness, education, support, advocacy and research, our activities support our mission as follows:”[/I] there is more, lots more please go to the website.

[url]http://www.neuropathy.org/site/PageServer?pagename=AboutUs_History[/url]

In the past, some people on this forum have given me the impression that they do not believe CIDP is under the auspices of peripheral neuropathy. Really?

See this on the main web page under the Neuropathy tab and then Types of Neuropathy-

[url]http://www.neuropathy.org/site/PageServer?pagename=Type_Immune[/url]

For more information about peripheral neuropathies including CIDP and immune-mediated neuropathies or about The Association and Support Groups in your local area, please call us at 212-692-0662 or write to us at: [email]info@neuropathy.org[/email]

What can you do?

2. Do what homeagain has repeatedly said- get involved. Contact, and then visit each member of your State and Federal congressional delegations. Repeatedly.

What can you do?

3. Make sure you go for evaluation at a Teaching Center. During your treatment you will serve as the test patient for numerous ‘resident’ doctors to evaluate you and make their report to the big Cheese. Finally, you will be seen by the big cheese. In this way you directly contribute to the learning curve of big medicine.

I recall at Mayo clinic, during my testing, one Specialist-Professor-Surgeon asked my permission to photo my right hand stating, “…sorry, we cannot do anything about your case. But, we can use your case to teach the next generation of doctors.”

Yuehan,
I just joined the Neuropathy Assoc as you suggested, I hope to learn more and contribute more for further education to our gov’t and doctors and on here as well. Thank you for the suggestion! The more we know the better off we are.
Wendy 🙂

Every time I go to my appointments I take a list of questions. two copies. One for him, one for me. He does his exam, I answer his questions, and then he answers mine. any questions he can’t answer, he gets an answer to me. This keeps him accountable to me. I can’t keep him accountable to everyone.

I don’t want to throw this back on the patient, but when a patient walks out of the office without answers one of a couple of things need to happen.
1. are you going back to this Dr.?
2. Will you accept the fact that your Dr. will not or cannot answer your questions?
3. Why would you pay someone who will not answer your questions?

or
1. Was the Dr. right in not sharing medical information with you?
2. Is the Dr. so smart that you can’t possibly understand his humungus brainpower?
3. Were his golf cleats clicking on the floor? Was he checking his watch all the time?

I have found that there are good Drs. and bad Drs. Just like everything else in life. I don’t deny that they have an extreme amount of medical knowledge. And I don’t deny that whatever I learn will pale in comparison to what they have accumulated in their lifetimes, but they don’t have to treat me like a moron. They can answer my questions and they can try their best. For that I can pay them and continue to seek them out for my care. If they cannot do these simple things, I will find someone who will.

I don’t know about any of you but before I got sick I also have never heard about GBS or CIDP.

Now every chance I get I share what I know.

My family doctor quite often has student doctors and I go in whenever I can to spread the word and show them my feet.

Each month I go to a small hospital and again I try to spread the word, as I get my IVIG in the cancer clinic people often think I have cancer.

I have told my regular nurses that I am more than happy to have people come ask me questions.

If new medical staff happen to be there-students, docs, nurses bring them in to see what I have got and chat about it.

It is amazing how many do that test where they run something up your foot to watch for a reaction. Of course nohing happens to me as both my feet are paralized. They are shocked that I can walk, well more like waddle like a duck and not very far.

I am no means an expert but I hope by sharing what I have it can help someone else in the future.

Hopefully we can pass along the message, if I tell two people and they tell two more and so on..:D

Have a great day,
Rhonda

Actually, it is up to the Medical profession to be responsible to inform and educate their doctors about illness. That’s what they are supposed to do, and that is why doctors are the most powerful people in the land, next to the judges and politicians, and why they are the most highly paid.

Unfortunately, most doctors know nothing or next to nothing about this condition, mainly because of false information and denial, ignorance or carelessness on their part. Why is it that they don’t make an effort to learn about this condition when they see patients suffering with it? Why? Because it would require them to go a few steps out of their comfort zone to learn something and apply it.

How many of us have discussed and shown our condition with doctors and medical staff only to be ignored, sent away or misdiagnosed? You’d think the symptoms would alert them to the fact that something is wrong, but many times these people don’t know and don’t care. Yes, we are the guinea pigs and the lab rats of the great god science, and some of them may even have an interest and a conscience to do all they can for us, but so often we are on our own. It’s a shame that in addition to coping with this terrible condition, we are also left with the responsibility of educating the doctors.
But it’s like the proverb “you can lead a horse to water, but you cannot make it drink.” Doctors should know their job; so why don’t they?

But the truth is powerful too. And whether we declare the truth about GBS while dead, comatose, crippled and in pain, or in ongoing related-medical problems, it will continue to speak in the face of ignorance and arrogance; that’s the only hope we’ve got.

a ‘diagnosis’ by the ER physician. He proudly TOLD me THAT he’d found it on the ‘internet’! That was a while ago.
I wish more was done to relay info about GBS and CIDP? But, when you look at this site? url-http://neuromuscular.wustl.edu/alfindex.htm-url
Just really LOOK at all the neuro issues these folks must learn and know about? Each time I go to a new doc or for tests or surgeries? I tell them, and you can actually SEE them trying to ‘replay’ their ‘memory banks’ about [I]that[/I]. Likely from year #2? Then the ‘cannot retrieve info’ eyes click on and you know where you are at! Thus you have to be fast or faster than 60 seconds’ ‘attention spans’ w/analogies or descriptions! Enuf to get the doc’s’ brains into THINK mode.
We can try to educate? Best-first with local leaders, sometimes they do move up the foodchain? On the local levels, things like access to municipal, state and federal buildings can improve with your EDUCATION of those locals. Formally or informally. We all know how HEAVY some of those doors are to the balance and strength impaired!
To be honest? Give some docs a break? In that they cannot know more than either their educations and or their experiences. To others who discount you? Those second opinions are cheap compared to your quality of life long term!
I have had ‘students and residents’ come in and ‘meet me’ on occasions. I’ve always kept my onset, progression, diagnosis and treatment tale consistent to the letter! I DO manage tho? To insert the fear factor [if possible] of never knowing WHAT IT IS that I HAVE! That puts all things that’ve happened on a personal level in relating it all to these newbies. I encourage questions and often tell them where to look! Such as sites like this and many others. The NIH research and clinical trials stuffs can and does hit home runs in that research can be done by mere mortals.
Rhonda? I like you, silently chuckle when they do those ‘touch’ tests! I make SURE tho, to let them KNOW my eyes are CLOSED during the tests!
And…the classic ‘duck walk’ thing! Hugs to all!

Too many times I had gone to doctors only to be dismissed. Later I gathered all my previous medical file info and saw how the findings I hadn’t known about were never reviewed. My primary care doctor wouldn’t look me in the eye when I point blank asked him why he dropped the ball. He was suppose to be my foremost line of defense so to speak. A doctor is suppose to be an investigator rather than writing numerous prescriptions to numb the symptoms instead of diagnosing.

I tell everyone about the GOOD doctors they should see and the BAD ones to stay away from. We need to be proactive with our care as I learned the very hard way.

I was fortunate that my primary care have dealt with the disease some six months before. This was in 1984. When he examined me he immediately called the hospital and asked that a Neurologist be on standby since he was sending me by ambulance. The Neuro I had was versed in what CIDP was. I spent almost six months there. It wasn’t until O had a number of relapses that he sent me to UMDNJ to see the Neuro there who was considered so well versed in this that he was used as a professional witness. It wasn’t until I moved to Ohio that I became aware of the lack of knowledge by drs here

[QUOTE=Dick S]Every time I go to my appointments I take a list of questions. two copies. One for him, one for me. He does his exam, I answer his questions, and then he answers mine. any questions he can’t answer, he gets an answer to me. This keeps him accountable to me. I can’t keep him accountable to everyone.

I don’t want to throw this back on the patient, but when a patient walks out of the office without answers one of a couple of things need to happen.
1. are you going back to this Dr.?
2. Will you accept the fact that your Dr. will not or cannot answer your questions?
3. Why would you pay someone who will not answer your questions?

or
1. Was the Dr. right in not sharing medical information with you?
2. Is the Dr. so smart that you can’t possibly understand his humungus brainpower?
3. Were his golf cleats clicking on the floor? Was he checking his watch all the time?

I have found that there are good Drs. and bad Drs. Just like everything else in life. I don’t deny that they have an extreme amount of medical knowledge. And I don’t deny that whatever I learn will pale in comparison to what they have accumulated in their lifetimes, but they don’t have to treat me like a moron. They can answer my questions and they can try their best. For that I can pay them and continue to seek them out for my care. If they cannot do these simple things, I will find someone who will.[/QUOTE]

I have to quote Dick’s post its entirety. Handing a new doctor a list of issues has become my SOP (standard operating procedure). Watching the facial expression when you hand them the list can be amusing as they don’t expect it. Especially if it’s a doctor that usually allots 15 minutes per patient. As I have a hefty out of pocket deductible, I’m going to get my money’s worth each and every time.

I don’t believe doctors can be knowledgeable of the many illnesses, syndromes, diseases. As such, it would behoove the patient to try to supply as much information as possible. This is another reason that I don’t mind if they want a PA or a resident to sit in on an appointment. I have to say, most of the doctors just out of school tend to be fairly knowledgeable about GBS. I usually bring up CIDP and the similarities as unfortunately, CIDP isn’t as well known. I certainly wasn’t aware of it until I joined this site.

Take care,

Tina