Doctors should be reviewing this GBS/CIDP site
AnonymousMay 17, 2011 at 11:08 pm
I think doctors could learn a great deal by reading this site. You could ask 10 Neurologists the same question and get different answers from all of them. They simply don’t know. Many on this forum know more about CIDP than they do. I’m not picking on the docs- I simply know they don’t have the answers about CIDP. In fact, CIDP is really just a group of symptoms as far as I’m concerned and not a diagnosis.
AnonymousMay 18, 2011 at 4:25 pm
I agree. I think the doctors should read what is going on with everyone. My wife reads stuff on here all the time and tells the doctor about it. She was the one that suggested we try steroids along with the IVIG and I started improving right away. I went from a quadraplegic to being able to use my walker again and still improving and gaining strength each week. Still have a ways to go but have come a long ways to get to where I am. God and prayers have given us the strength to make it this far and with Him ALL things are possible……Everybody just hang in there…..
AnonymousMay 19, 2011 at 3:48 pm
In the last month or so, due to some unique opportunities, I had the pleasure of meeting and talking to a number of doctors, nurses and Physical Therapists. On one hand I was surprised at the number that seemed aware of GBS, but on the other somewhat disappointed that the very same individuals knew nothing about CIDP. How can this be? North West Florida is not exactly a leading medical center. So how can these individual be cognitive of GBS and know nothing of it’s chronic cousin [CIDP]?
AnonymousMay 20, 2011 at 1:05 am
[QUOTE=jeanbell1]I think doctors could learn a great deal by reading this site. You could ask 10 Neurologists the same question and get different answers from all of them. They simply don’t know. Many on this forum know more about CIDP than they do. I’m not picking on the docs- I simply know they don’t have the answers about CIDP. In fact, CIDP is really just a group of symptoms as far as I’m concerned and not a diagnosis.[/QUOTE]
Beside telling my Dr’s about this cite. I also let my Vacine Lawyers know bout this cite. They were not aware this cite exsists.
So gave them pointers and hopefully they took some time to look into this!
June 17, 2015 at 12:35 pm
Hi my Dad just got diagnosed with GBS/CIDP and it looks as if it was due to the fluzone flu shot which is extremely dangerous for elderly people and people over 65. I wanted to discuss it with a lawyer and noticed you talk about yours. Could you send me their info. so I can look into it?
Thank you, Lisa
AnonymousMay 23, 2011 at 7:58 pm
Useful in that some doctors might be able to read about people who have this condition.
Not so good might be that YOUR doc mite see a reference of him/her-self that might not be too complimentary in respect to diagnosis. Conversely? Should a doc get a glowing ‘review’ by one of us? It could be that complacency could set in.
Therefore none of my docs ever get my e-mail address! Or, know my name here or other places.
So much of our getting diagnosed depends on your doctors’ experiences in encountering and/or diagnosing CIDP. Really the statistics are against us here, especially given the dozens of other related neuologic issues that overlap with our medical problems.
From all I’ve read tho, I know of only ONE physician who contacted a board about a patient who had had problems w/diagnosis w/in that practice. And that one patient now has a very solid relationship with the physician in terms of treatments.
Boards could be useful for interns and residents in sensitising them to the patients pains, fears and frustrations. However if they specialize elsewhere? Their radar might not be so sensitive to our overall problems.
As for the not so good docs? Should you apply for disability after reporting here or elsewhere? They could blast you out of the water w/all sorts of reasons which many of us have encountered and will encounter.
Jim? I truly like that you had the chance to talk to real docs as a real PERSON and that often helps make those key ‘connections’ we need to do in terms of ‘advocacy’ of the non-political type that reach out into those communities that need to be more alert.
Thank you for doing that!
AnonymousMay 28, 2011 at 6:07 pm
The way I see it is the docs won’t listen to anything here not posted by another doctor. This is a generalization only and I am sure some doctors might actually read this site to try and get a better feel for what we go through.
My family practice doctor of 10 years admitted to not knowing about the disease when I first saw him. He was kind and very compassionate to my situation.
Fast forward 10 years (about 2 years ago): This doc said that CIDP has no effect on internal organs, and I begged to differ and explained my problems where I no longer could feel an urge to urinate due to nerve damage. He found some info from some source that was absolutely wrong, and said, “that cant be, cidp doesnt affect organs”.
He refused to believe what I told him, and “poof” went a great 10 year doctor patient relationship. If you can’t trust what I say as a CIDP patient, then how can I depend on you to treat me correctly? I never went back.
I guess my point is even though I was happy that doc was trying to learn about CIDP, he got bad info and that is worse than no info in my opinion.
Here we have as many different presentations/symptoms/onsets/progressions/degrees of cidp as there are members. The smart doctors know its not a one size fits all disease. If they read the boards here they would find that out quickly.
I am very lucky to have my neurologist who cares enough to learn all he can about CIDP. Dr. David Uskavitch at Vanderbilt University Medical Center won’t let me refer to him as a neuropathy expert. (as far as cidp and neuropathy experts go, he certainly is one of very very few) He says it is a subject of great interest to him. I admire the guy for taking on the hard cases like me where other Neuros got scared and pushed me on down the line.
June 17, 2015 at 9:05 pm
Your post belongs under the topic “Vaccine Reactions”. There you will find more detailed discussions and links to learn more about the legal process involved. Here are some additional links to other helpful resources:
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