show 2nd opinion neuro the records from prior dr who wrote me off?

[JaimeS]

One type of doctor tells me my problem should be addressed by another type. That type says I need a third type. The third says I need the first type.

Ugh, hate that. What that really means is that no one knows what to do, but perhaps they can shove the complicated problem onto someone else's plate...

It is notoriously difficult to find someone who is clear on multiple issues.

Part of Mayo Clinic's claim to fame was that they used to summon multiple docs to see the patient at once. This helped them figure out what was really going on. That changed because of the changed nature of health insurance - it wasn't fair to the patient to get four separate bills for four separate docs for the same hour of advice. However, it wasn't fair to the docs that, when they consulted together, each of them earned 1/4 of their usual fee, either. This was 'solved' by cutting out collaborative practice almost entirely. Now Mayo is like a beehive of activity. If you go, you'll spend the whole time getting tested, sometimes repetitively, but good luck getting a meaningful diagnosis (instead, I got three separate diagnoses that would have a clear connection to a blind man). In other words, a lot of sound and fury, signifying nothing.

We're back to "do the research yourself and get a decent doc who can go along with you". Not that this is ideal or even reasonable for many people. But it's what we ordinary folk have, who can't have a consulting physician on call.

-J

 

[SickOfSickness]

Wow, I didn't know that Mayo 'solved' it with an axe. That's so sad, all the patients who aren't going to get diagnosed because of that.

So I have to get used to that blank stare from specialists, and especially general docs. They're supposed to be experts in that field, and it seems like they are sometimes completely lost when I've brought up an issue.

If only they would offer to research it, or read material I've brought in. Instead they want me to see a different doctor.

The funny thing is, for some of my less common issues, they assume that another doctor has the knowledge and willingness to handle my case. But they don't, so why would a different doctor? They always tell me how certain they are that someone else can help.

 

[JaimeS]

The funny thing is, for some of my less common issues, they assume that another doctor has the knowledge and willingness to handle my case. But they don't, so why would a different doctor? They always tell me how certain they are that someone else can help.

That's part of the mythology that they teach med students as they work their way up through medical school: that once they graduate, they'll know everything about the body that's worth knowing. Even the wiser docs who say, "you don't get it, children - we know a fraction of a fraction of a fraction of what there is to know..." are often ignored, or the med students see it as false modesty because clearly the speaker is the Keeper of All Wisdom.

When they graduate and realize they don't know everything (ppl they can't help!) they have one of three options:

1. Continue pretending to know All the Things, or assume that the things they don't know aren't worth knowing
   
2. Admit to lack of knowledge, at least to self, but hide what they view as their own incompetence from others
3. Become the wiser doc who says, "we know a fraction of a fraction of a fraction..."

If they fit into the first category and hear something in the clinic they don't understand, they field you to psych. After all, if they don't understand your condition, it cannot be comprehended by mortal man. Psych problems as we all know are not medical conditions, but of the Spirit, which is not their purview. (Stupid, stupid, STUPID, but prevalent mindset.)

If they fit into the second category, they assume that there is a sacred cadre of doctors who Know Everything, to which they do not belong. These are the ones who keep sending you to other people, just knowing that god-like man they were trained to believe exists is out there, like House MD, just waiting to diagnose you with Not-Lupus.

If they fit into the third category, they may be able to help you.

-J

 

[Valentijn]

Also, sometimes they know their specialities well but they are more research oriented and not as interested in helping complex patients. They want to get through the patients fast and go back to their research.

Or they're interested in complex patients, but NEVER ones with ME/SEID (because they believe that we're just nuts, and not actually ill).

 

[taniaaust1]

I would love the go-ahead to write this up as an article for the blog, @everyone ever.

-J

I think "how to deal with doctors" would make a good PR article if the ones who run the forums agree with it. Maybe you could ask them if you could do one for the site if accepted. It's something everyone new to ME/CFS ends up having to deal with. Your posts were good, I think you could write a good article on it.

 

[taniaaust1]

Hello - I'm still in the process of finding local specialist drs (as required by my employer to complete LTD forms justifying my continued inability to return to work) who will take me seriously and not just send me back to another psych dr.

I know a few here recommended you only bring up only 2-3 symptoms to the specialist you are going to see and usually I'd completely agree with that as I do that myself when I go to doctors (or doctors get too overwhelmed and the symptoms you want helped to most then just don't get attention) .. but if a doctor will writing a report for something eg your inability to work, it could backfire greatly if you don't give all your symptoms by making them think you are far less sick or disabled then you actually are.

If you give only say 2-3 when a doctor is going to be writing a report for somewhere...they could turn out to be ones that doctor doesn't think are too bad or ones the doctor may even think are treatable eg if you bring up insomnia for example...the doctor could think its treatable, so could write on a report that he sees you fit to work with just a little treatment.

IF you will be telling him that you have been referred to a ME/CFS specialist too (that's something you may choose not to bring up if you want a dr not influenced by the psych taints around this illness, so really think about it before bringing this up unless your doctor already has mentioned that possibility in your referral letter).

If doctor will be giving a report elsewhere, you could print off something like the ME/CFS symptom list at http://wwcoco.com/cfids/bernesx.html and just highlight the symptoms on that you have. (You could even number in order of worst for your first 3-5 symptoms to make the doctor aware of those so he doesn't focus on ones not so bad if he's going to try to treat things)

but yeah if you are going to a doctor who isn't going to be doing a report but rather going for treatment, I too suggest to not bring up more then 2-3 symptoms at once. (I find most doctors deal better with only 2 at a time.. at 3, some get overwhelmed and will stop paying as much attention. Sometimes it can take a whole appointment just to deal with one if its complex).