Doctors don't have the time anymore to be looking things up. Too bad. And they have a delegated time to be with a patient which isn't much time at all. They then are too busy keying stuff in about the patient. JMO Sometimes I and others I know wish for the days when this wasn't true. You could tell your doctor anything and it wasn't keyed in to health records that go everywhere.

I am one who frankly has had a negative attitude towards doctors. But--99% of them are intelligent, compassionate practitioners who do their best to help their patients.
Yes, many attend conferences paid by pharmas. But many also do research and clinical trials to make sure that any drugs coming down the pike are safe & effective for the patients they treat.
Pharmacists are educated in drugs, their efficacy and their interactions. Physicians for the most part are educated to diagnose and treat diseases. I was told this by my local pharmacist, hinting in her kind way to give my doc a break.
She wouldn't be able to diagnose what is wrong with me, but could give me advice on medications to treat any disorder I ask her about.
Yes physicians need to keep up on any drugs and their efficacy & interactions. But they also have to keep up on the huge amount of research and articles that come out weekly.

I have had to do some work in changing my attitude towards doctors. Part of that change came about through having an excellent neurologist (thanks again Wiz). He's not perfect, but I trust him, and he does listen and respect what I bring to our discussions.

It is up to us to be our own best advocate. We need to do the research-without becoming obsessed-to make sure we are doing what we need to be the best human we can be. If we don't feel that our physician is doing everything possible to help us, we have the responsibility to find one who will. We have the responsibility to come to our appointments with our symptoms and questions in hand and determined about getting answers.

We need to understand also that physicians are human beings-granted some have huge egos and make it difficult to like them-and they have a load of responsibility in being healers.
They are our partners in our quest towards wellness. They are not our lord and master, and we aren't squeaky little mice who quiver at the sight of a doctor. We are adults, consumers of health management. They are the providers of that. Both sides need to acknowledge that and work together.

Ok, off my soapbox. I'll read this again the next time I go into a rant about how horrible doctors are

Drug companies no longer do much research or innovation.

Those days are past.
Here is an excellent excerpt from Marcia Angell MD's book:
http://www.nybooks.com/articles/arch...gination=false

I highly recommend this book to anyone interested in learning the TRUTH about the drug industry.
More on Marcia Angell MD:
http://en.wikipedia.org/wiki/Marcia_Angell
Big Pharma is very good at misleading doctors and the public alike.
One has to really really dig to find the truth.

Well said Debbie.

Thanks MrsD for your usual good articles and info..

I have had to do my own research and have for years and years. There are no doctors/neurologists in my area who know anything much about CMT. They have maybe read 10 minutes about it. A doctor told me that.

There is no cure/treatment for any type of CMT, and there are many types of CMT, at the present time. So we CMTers pretty well deal with the symptoms as they come along. Some doctors do not realize that they actually have seen someone who has CMT but it has been misdiagnosed to this day.

Sounds alot like MS.

Yup, it sure does. And I might add that I have known about and seen CMT in the family since I was five years old and that's a long time ago.

I saw an adolescent with it several years ago. It isn't all that uncommon but as you know it is hereditary.

http://www.ninds.nih.gov/disorders/c...arie_tooth.htm

Yes, it is but there are also rare mutations. The article points that out. They always say rare but not so sure how rare it really is to have a mutation. But, for the most part the many types of CMT are hereditary. Forgot to say that. Thanks.

You can be young, old, or in-between when symptoms might show up. Or symptoms may never be that obvious but you still can pass it on. Symptoms of CMT vary greatly even within the same family. And symptoms are mostly different with the type of CMT a person has. We CMTers are all different for the most part.

Hi Kitt. My porphyria is like that. I have to do most of my medication research, but I do have a pcp who does look up online to see what drugs I probably can and can't take. But I had a bad spell with Mirapex lately, which was said to be safe--unless it was my new diuretic which gave me two weeks of high blood pressure, corrected now when I went back to old diuretic and dropped Mirapex. But my legs jerk all night, so I only get 3 hours of sleep. I guess it's better than feeling emotionally distraught as I did on the new meds.
My doctors do not mind if i do my own research because for the most part they will not do it...much too complicated.

Motor Sensory Neuropathy is a title which sounds like what I have....some of these neruo ailments have titles that sound alike? It got much worse in the past few years, no longer controllable by magnesium, although without magnesium I would be jerking too badly to be left without treatment. I am sort of confused. My left leg twists and goes into very fast shaking spasm, then stops for a few minutes, then does it again, all night. It could be MS and it could be Porphyria or it could be because I have low ferritin due to phlebotomies for my Polycythemia Vera. I will be going to Mayo for more p32 in 2013. I don't want to take more radiation, but I probably will, to quell platelets. Phlebotomies control the red cell proliferation.

Basically no doctor feels competent to do anything about all this. Mirapex seemed to work but side effects were serious.