They know so little about us

[sureimsore]

Thinking back to the current clinic I attended, and the one previously, they barely asked any information beyond the usual drug allergies, chronic conditions, smoking/drinking habits, etc.

Their medical history questionnaires didn't ask about any physical routines, food allergies or sensitivities, previous bacterial infections, any memory/cognitive issues.

The doctors/Physician Ass'ts have so little time to spend with a patient, so you would think having as much information on file would come in handy.

I met with a Physician's Ass't at the clinic yesterday to have him fill out paperwork. I gave it one last shot for him to consider an underlying disorder. I told him how I never had endurance; I can run short distances fast, but beyond a few minutes my legs would hurt and I would get winded; this is even after decades of running. I thought this might hold a key, since it could be a sign of metabolic dysfunction, which causes metabolic myopathies.

I saw him squint as he tapped his fingers and ruminated this idea...for a second I was almost optimistic. Just to drive it home, I reminded him of the IBS. He tapped his fingers, and the corners of my mouth started going up. He then shook his head and started talking to me about Lyrica; I bit my lip to keep from crying.

I don't know how will they ever get past the catch-all diagnosis of fibromyalgia if they don't try to get to the root.

 

[Eyesup]

fibromyalgia is a condition. They don't know what causes it yet. It most likely is different causes for different people. I am begging to think the diagnosis is an "easy out" for Dictors. When they don't know what it is, rather then really digging in and cross referencing our symptoms/tests and possabilities they ruel out the obvious and once we are labeled it's like a death sentence...getting it overturned will take an act of congress.

Can you get a copy of all your records, compile your tests/blood work in cronilogical order and approach a new doc without divulging the fibro diagnosis?

 

[sureimsore]

"When they don't know what it is, rather then really digging in and cross referencing our symptoms/tests and possabilities they ruel out the obvious and once we are labeled it's like a death sentence...getting it overturned will take an act of congress."

That is perfectly said eyesup.

Well, I'm in a tough spot right now. My doctor had been fired from the clinic because he is under investigation by the medical board for sexual misconduct. So they are going to send me my records to see if anything is amiss.

I may take them to a private doctor out of network; the problem is getting approval for this
from the insurance carrier (complicated...I could wind up losing my insurance if I don't do it properly).

 

[Eyesup]

Sexual misconduct!!! DICTORS!!! What a crock, I'm not sure how an insurance company could hold it against you for seeking help outside their network when clearly who they have in their network are inappropriate at best. Loop holes...they are so good at them.
But getting you records is a good start to helping yourself if you can make heads or tails if it. I've noticed they often leave out pertnent info, they like to cover their buts!
I guess my best advise you already know, get everything in writing. Cover your but better then they cover theirs! Lol

 

[sureimsore]

Yes, they make the red-tape and protocols as hard as they can...I guess they do it in an effort to get you to give up. Eh, I'm just about there.

One day I'm going to do a blog entry on doctors and healthcare in general out in my state of Cali. Think it will be helpful to others to know about certain things that go on in an effort to over-protect the "dictors" (LMAO! your the best!) and under-protect the patients, especially those that are low-income.

 

[gryfalcon]

Imagine you are in McDonalds (because you are in McDonalds). They have maybe twenty food items. Their goal, when you come to the counter, is to determine which of the twenty food items to give you. Will it be an antibiotic? Steroids? Anxiolytic? Antidepressant? An opioid for pain (not in this lifetime, you drug addict!!)? Proton Pump Inhibitor? Antipsychotic?

This disease does not have a definitive diagnostic criteria, so they don't know exactly what to do to decide if you have it.
While it has some approved treatments, none of them actually work, so they don't really know how to treat it, except to go down that short list of medications.

The reason they don't care if you try to talk for three hours about your symptoms is that they know they are still going to give you one of four or five medications and send you on your way, regardless of what you say.

They are really no better than snake oil salesmen (or Lyrica salesmen).

The terrible secret that they don't want the patient to know, is that they don't know what to do.

 

[sureimsore]

The terrible secret that they don't want the patient to know, is that they don't know what to do.

You hit the nail on the head gryfalcon.

And you know what, I think that is OK. And when I say "OK" is that if it truly is a medical mystery right now, well, it is what it is. Hopefully one day in the future some research will be done to find a more definitive causation.

The problem I have is the first thing they arrive at is "you must be suffering from stress"
or they think some other mental condition. And sometimes they say it as if it is all our fault.

Yes, they push the gaba drugs. In reality they are licensed drug pushers.
I told them that I have developed bad reactions to even OTC drugs that never used to cause a reaction, and still they say "just try it." I told them that I understand the drug will work for some, but for some they have been left in more pain and I asked straight out "what if that happens." Sound of crickets chirping is the response.

 

[moe1959]

Amen to that! How much of a cut are these Dr.s getting on Lyrica? I'd really like to know. For those with whom Lyrica works that's great, for myself lyrica ansnd cymbalta had terrible side effects for me. One of which is weight gain. For me, 40 lbs. I cannot take off the weight now. Do I work out you might ask, only walks everything else is to much and lands me horizontal for days.
Word to the wise do homework, check side effects, and monitor yourself. I can remember the first time II got on the scales and had gained 10 lbs in a month. I only wished I had wrote it down.

 

[elise]

Sureimsore sad to hear you are going through so much to get treatment. Can really relate. Have you tried the whole food no additives no processed foods diet changes? Is alot of prep work but worth a try. If I can think of the plan name will share. Brain is breaking major wind today. Read brain fart.

 

[sureimsore]

@elise - LOL! No worries, if you come across the name, sure, I would consider anything at the moment. Although I would probably have to
improvise a bit, due to monetary concerns. But I try to stock up on organic anything when it's on sale, and the same with the better quality meats.
But I have to tell you, I just baked my boyfriend a cake with Hershey frosting...and I couldn't help myself to not help myself to a tablespoon full

 

[Trellum]

Oh I know this same feeling of disappointment and despair. I had this feeling so many times, and this is why I now hate and really dread going to the doctor, which is bad because I was diagnosed with a cavernoma back in 2014 (didn't feel like sharing it with you guys back then - sorry!). Sadly we need to learn to cope with this People like us end up going to the doctor more often than other people, which can be kinda saddening if you focus too much on that I do sometimes.

 

[Eyesup]

Trellum you taught me of something new. I've never heard of cavernoma before. What is the location of it. Is surgery an option? I would think having both would make it so hard to know when it's fibro and when you need to head to the ER. Is there anything they can do to eliminate this threat? It sounds so scary.

Gryfalcon you said it right. Most Dictors haven't a clue and can't admit it so they write a prescription and hope we don't come back.

 

[sureimsore]

Wow Trellum, very sorry about that condition!