systematic approach for dealing with dr.s?

I apologize for sounding like a broken record. I know there are many of you reporting the same frustrations. I also know that many of you have it pretty bad - I just followed your threads ceciliasky and really empathize.

What I am frustrated with is not getting any treatment in the mean time.

I am wondering if any of you have any solid advice on how to speak to the docs., expedite the process and not sound like a whiney person in the process. I am just not sure when to stop pushing or if I even am to stop. Does that make sense?

Maybe this is the part where I just need to practice more acceptance of the situation.

This is what I have done:

1. kept a chronological journal (w/ the help of my husband) of symptoms and dates.
2. Always have had an additional person in the room - which has been Extremely helpful.
3. Try to state the facts without becoming emotional.

Why I am frustrated:
depite the MRI's which show 10+ lesions, and all of the other (some debilitating) symptoms, nobody seems in any hurry to figure this out. The whole "let's wait and see" and "see you in month" thing is starting make me crazy. I CAN'T function and I don't know how to deal with it or plan for it. Is this going to get better? Is it going to go away? If they come to no conclusion about it, does that mean that there is nothing to be done for it? I don't get it.

Does that ever happen? That there just is no conclusion?

Angie,

 

I’m sorry to hear that you are having such problems getting a diagnosis, and even any symptom meds. What does your neuro say caused your lesions? Have you seen what is says on the MRI report? Have you gotten a second, or even third opinion? I experienced quite a bit of the “hmmm…..come back in 3 months” phenomenon as well, and I had pretty much given up and decided to stay away from docs in general. My last ditch run was a trip to the Mayo Clinic, and this where I finally got some answers (i.e. what is that thing in my head, lol) and also found a doctor willing to prescribe some symptom meds for me.  I don’t know what your situation is with insurance, finances, geographic location etc, but maybe this could be a route you could take? Ten plus lesions would probably give them something concrete to work with. Not only are their docs and radiologists excellent and very friendly, they also test for pretty much everything under the sun (they initially took 11 vials of blood, and then I had to go back for more…what vampires), so if you have some rare disease they are more likely to find it.

 

Best of luck to you, and feel free to email me if you want any additional information on the Mayo Clinic (there are actually 3 of them).

 

Sunny

A couple of months is a BRIEF amount of time to come to a diagnosis. Even when it is clear-cut, it can take more than a couple of months. 6 months, a year, even a FEW years is common. As you're finding out, all those tests take time -- time to set up, to get down, to get evaluated, to get test results sent here and there..

They won't help with symptoms until they know the cause, most of the time. Some drugs are specific to particular diseases and harmful to others, so you don't want to be taking something that will end up causing even MORE harm.

I know the waiting is hard, but sometimes that is indeed all you can do.

Hang in there Angie! It really does seem like dealing with doctors is often a hurry up and wait experience. It sounds like you do have good docs who are pursuing a diagnosis though….it is just such a drag that that the testing process has to take so long, huh, especially when you are not feeling well. And of course the thing with the Mayo Clinic is that it takes months to get an appointment there too…lol…..Anyway, just hang tough, it will happen.

 

Sunny

Hi Angie,

I understand your frustration! I genuinely hope you get some answers soon! Sorry. no advice!

KAS