systematic approach for dealing with dr.s?

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angielov
Regular Member


Date Joined Feb 2007
Total Posts : 58
   Posted 5/7/2007 9:43 PM (GMT -6)   
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?

Gizzmoe
New Member


Date Joined Mar 2007
Total Posts : 15
   Posted 5/7/2007 9:52 PM (GMT -6)   
Right now I am in the process of getting whatever is going on with me diagnoised. I spent over 4 years dealing with what you have, though i dont have lesions that I am aware of at this point. Just got my spinal MRI done today so will know more with that later. I do have many symptoms and have for years but have never been taken seriously till now. Just keep pushing for a diagnosis and keep at it. Otherwise if its anything like I have been through they will not take you seriously. I have gone through many doctors and finally found one that is pushing for a diagnosis.

Alisa

Sunnycitrus
Regular Member


Date Joined Apr 2007
Total Posts : 334
   Posted 5/7/2007 11:20 PM (GMT -6)   

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


angielov
Regular Member


Date Joined Feb 2007
Total Posts : 58
   Posted 5/8/2007 1:47 AM (GMT -6)   
thanks Sunny. I'll answer your questions.

1. Neuro doesn't know what caused the lesions - yet
2. The MRI says : at least 10 foci of T2 measuring 3-4 mm involving subcortical and periventricular white matter of both hemispheres.
differential diagnosis listed as: MS, vasculitis, and early-onset of age related microvascular changes in patients with diabetes or hypertension.
3. My first Doc said "if this were Vegas, I'd bet on MS, but I'm not sure so I'm sending you to UCLA"
4. Doc at UCLA says, "not typical of MS" and "possible migraines" and "we'll go down the vasculitis route"

It's not that they are doing nothing about trying to diagnose, it's just so slow. And in the mean time seem unwilling to help me with my symptoms. It took 1month and 1/2 to get the VEP and now another month for the eye appt. By the time I see her after the initial consulation it will have been two months.

I have thought of MAyo CLinic - my family lives in Minnesota.

We'll see what happens at the end of May. Maybe by then she'll at least help me with my symptoms.

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 5/8/2007 5:46 AM (GMT -6)   
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.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


angielov
Regular Member


Date Joined Feb 2007
Total Posts : 58
   Posted 5/8/2007 10:22 AM (GMT -6)   
Thanks Uppity. That is what I needed to hear - although it's been closer to a year since I started with my first MRI and EEg. I guess one year is still a relatively short time in comparison to everyone else. It's only been a couple months now since I've been at UCLA.

Sunnycitrus
Regular Member


Date Joined Apr 2007
Total Posts : 334
   Posted 5/8/2007 4:42 PM (GMT -6)   

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 :-)


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 5/8/2007 6:45 PM (GMT -6)   
Whenever I've switched doctors, regardless of how current any past testing has been, it seems like the new doctor wants his own testing done, with his own clinics, his own technicians. So while they might LOOK at old stuff...they really do their own thing. Which takes time. Frustrating, but that's what generally happens.

My own case of MS was pretty clear-cut...but it still was from October when I first saw a neuro to February before it was definitely confirmed.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


KAS1
Regular Member


Date Joined Feb 2007
Total Posts : 161
   Posted 5/8/2007 7:41 PM (GMT -6)   
Hi Angie,

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

KAS
Not diagnosed
 
Neuro says he'd "bet on me having MS"
 
IF YOU CAN'T SEE THE LIGHT AT THE END OF THE TUNNEL...
GO DOWN AND LIGHT THE BLOODY THING!!!


angielov
Regular Member


Date Joined Feb 2007
Total Posts : 58
   Posted 5/8/2007 8:11 PM (GMT -6)   
Thanks to everyone who responded. I really look forward to hearing from you all when I sit down at my computer. You are the only people I have found who understand and identify with with what I am experiencing and that means alot because I feel pretty alone right now in that arena.

Today I was in a MAJOR brain fog and husband still doesn't get that part of it sometimes and takes things really personally. He will think that I am being terse with him or dismissive or whatever and it's so frustrating because I am struggling to get anything out that makes sense.

Your humor (Sunnycitrus) is also much appreciate thanks for making me laugh.
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