Quantcast

Living with Polyneuropathy CIDP, GBS, & CMT

Professional Ignorance

Just wanted to say that I was with a Nurse Practitioner that stated “GBS is a minor inconvenience” and that “Everyone recovers from it”. Needless to say I walked out and canceled all future appointments.
This man should be reported.

2 Likes

Sounds to me like he has his acronyms mixed up IBS is a minor inconvenience. GBS can be a life changing condition. When it comes to neurological symptoms there are some medical professionals who have the self belief (delusion) that they know it all. They don’t. Nobody knows it all. If you don’t feel comfortable with the service you are receiving, then get a 2nd opinion. That is your right.

I would like to add a word of caution regarding reporting. I’m in a smaller city and qualified neuros are limited in number and they talk to one another. I had a heated discussion with one neurologist and comments were made to me regarding that discussion via another. There are confidentiality laws regarding patient privacy but information is still shared. The neuro community is small and ‘Chinese whispers’ travel really fast in small communities. So please, be aware.

Merl from the Moderator Support Team

1 Like

What a shame. You should of asked if he has the same condition? If not, it seems non medical people and medical people alike can be mistaken and not sympathetic to the “invisible“ diseases. I always feel anyone whom doesn’t understand can be politely educated about these types of diseases. Ignorance about them is common unless they have it themselves.

The level of severity varies so much patient to patient that even some people who have had it can’t understand. A friend of mine had a mild case in the seventies where he had mild loss of sensation and some weakness with a full recovery. He couldn’t understand why my having GBS was a big deal even though I was hospitalized for three months and in therapy for four more with what appears to be permanent nerve damage on my left side.

Even though I was bed bound for seven months of which four were quadraplegic, he still felt it was a minor inconvenience. I spent four months at the Patricia Neal clinic in Knoxville, TN. I just feel I should somehow report this supposed health professional to someone and get him an education. His mindset was just unbelievable.

Ignorance and arrogance are two things that do not mix and yet there are excesses of both within the medical profession, but trying to have those within the profession acknowledge this fact is near on impossible. When it comes to rare conditions it is not unheard of to see 4 differing doctors and get 4 differing diagnosis. Each can be of the opinion that their assessment is correct and discredit any other view.

I say this from my own experiences over 20+years of identifying an issue only to be discounted again and again. I was labelled a hypochondriac, a malingerer, a drug seeker etc. Then I had a life threatening episode, that made them investigate and they came out with a line I’ll never forget “…Ohh, look what we found…” I’d been telling them for years, decades even, that something just wasn’t right and all they can say is"…Ohh, look what we found…" I was SO VERY angry. So I spoke up. The medical fraternity is very insular, they all look after their own.

Here in Australia we have what is called the Australian Medical Association (AMA) that all dr’s are members of. As individuals they are small but as an association they are huge and have the resources to defend any member. This became publicly apparent a few years back when a cancer patient was initially misdiagnosed, then when the appropriate tests were done she was not informed of the results. Then by the time she was retested the cancer had spread and she was terminal. She took the dr to court and the AMA rallied behind the dr. She had to bring in an overseas specialist to obtain a truly independent opinion. Eventually she won the case, but at what cost?

As for educating…, hmmmm, you can only educate those willing to learn and when they think they ‘Know it all’ no amount of head bashing will get it in there. As one dr told me “…I’m the dr, I know. You? You’re just the patient, you wouldn’t know…”

Merl from the Moderator Support Team

Hey Survivor,

How are things going for you now?

Do you have a plan for avoiding this appallingly ignorant (in the purest sense of the word) person in the future? And now that you’ve cooled down a bit, are you going to perhaps “educate” him on the true facts of having GBS?

I say go for it! And let us know what’s happening.

Seenie from ModSupport