Veterans: do you get misdiagnosed often?

[Brandy]

Twice this year I've been horribly misdiagnosed.

Once in the ER when they xrayed my spine they told me that I had moderate spinal disk disease and that I should stop doing about half of what I do because my spine was ready to crumble. I followed up with a spine specialist and he said bullshit, I was fine.

Then again a with a diagnoses of moderate level arthritis in my hip, and just got the results back from the specialist and, nope. No arthritis in my body. Probably a hip impingement and that's where I'm sticking until after the holidays.

My cynical nature thinks that perhaps the secret is if they say I have "moderate" anything, they are guessing based on my current profile, which is very athletic, so they assume that I've worn out my body, but thanks to my limited lifestyle as a heavy person, the truth is my body is in awesome shape for my age.

Or is it that we are zebras? Zebra is a medical term that they learn in med school that says "If you hear hoof beats, look for horses not zebras." And that means that for every 10,000 patients a doctor sees, maybe one of them will have something exotic. Every body else will have the same old, same old stuff. So rather than thinking about diagnosing MS or Lupus or Tutsi Fly Fever or something, it is just a cold and don't freak out your patients by saying anything else.

So what I'm asking is should I assume that any health weirdness is probably malnutrition? If it isn't a cold or something like that, but do hoof beats mean vitamin changes for me? At least as a place to start??

I hope you guys can translate what I'm asking here, because I can't seem to find good words to use.


Thanks!

 

[DianaCox]

This is a starting list - I'm sure others can add to it:

1) If you're having gut pain, your differential diagnosis needs to take into account of these potential DS-specific issues:

• Short bowel
• Blind limb (always have CT with contrast to visualize BP limb)
• MUST consider bowel obstruction in the BP limb even if passing stool and gas
• Adhesions and leaks/blockage of anastomoses
• CANNOT look at your gall bladder with endoscopic retrograde cholangiopancreatography (ERCP)
• Higher risk of SIBO (small intestinal bacterial overgrowth) and C. difficile
• All oral medications that are designed to be released in a specific portion of the gut, by mixing with bile, or over a specific period of time, must be reviewed for effectiveness in YOUR gut

2) Nutritional issues should be tested for as appropriate, because of the high risk for:

• Protein deficiency
• Iron deficiency anemia
• Vitamin D3 (and A) deficiency
• Potassium
• Zinc deficiency
• B6 EXCESS (not sure why, possibly due to taking Kirkland calcium citrate or other reasons, but B6 excess can be toxic)
• B1 or B12 deficiency

3) Other things that can go whacko with us more frequently:

• Thyroid
• Blood pressure too low
• Tooth issues
• Stomach issues (stricture of the sleeve, excess acid, hiatal hernia because the sleeve is more prone to slide than a full-width stomach, gastroparesis)
• Joint and other bone issues because you weigh LESS and your center of gravity and range of motion has changed, including stupid sounding but really annoying stuff like having NO padding on your tailbone.

4) Things LESS likely:

• Gall bladder issues IF you've had it removed (can still be a stone in the common bile duct however)
• Appendix if you've had it removed as part of your surgery
• Bile reflux (shouldn't be possible)

 

[Jbandmmomma]

We seem to hear of quite a few kidney stone issues, too.

 

[Spiky Bugger]

Twice this year I've been horribly misdiagnosed.

Once in the ER when they xrayed my spine they told me that I had moderate spinal disk disease and that I should stop doing about half of what I do because my spine was ready to crumble. I followed up with a spine specialist and he said bullshit, I was fine.

Then again a with a diagnoses of moderate level arthritis in my hip, and just got the results back from the specialist and, nope. No arthritis in my body. Probably a hip impingement and that's where I'm sticking until after the holidays.

My cynical nature thinks that perhaps the secret is if they say I have "moderate" anything, they are guessing based on my current profile, which is very athletic, so they assume that I've worn out my body, but thanks to my limited lifestyle as a heavy person, the truth is my body is in awesome shape for my age.

Or is it that we are zebras? Zebra is a medical term that they learn in med school that says "If you hear hoof beats, look for horses not zebras." And that means that for every 10,000 patients a doctor sees, maybe one of them will have something exotic. Every body else will have the same old, same old stuff. So rather than thinking about diagnosing MS or Lupus or Tutsi Fly Fever or something, it is just a cold and don't freak out your patients by saying anything else.

So what I'm asking is should I assume that any health weirdness is probably malnutrition? If it isn't a cold or something like that, but do hoof beats mean vitamin changes for me? At least as a place to start??

I hope you guys can translate what I'm asking here, because I can't seem to find good words to use.


Thanks!

I was recently incorrectly diagnosed, by a radiologist, with Multiple Myeloma. (Median survival rate is three years.).

I'm neurotic ennough that I hit the internet and found that my recent blood work did NOT support that dx. Went to my hematologist/oncologist (I go to him for iron) and he ordered a few more tests, none of which supported that dx, and we decided that:
A--It's highly unlikely that I have MM;
B--Even if I do have it, it is very, very, very early and I'll die of something else first...I'll die with it, not because of it.

 

[DSRIGGS]

I wouldn't say I get misdiagnosed but that nobody can seem to diagnose my exact problem. It is my belief that the root cause of most of my issues is my original DS being performed incorrectly giving me too short of an Alimentary limb. This led to malnutrition due to extreme malabsorption. At two years post DS Dr K revised me and it helped my nutrition a great deal but I still battle:
Non iron deficient anemia
Below range Total Protein
Chronic Fatigue
Chronic low BP
Chronic weakness
Chronic syncope (cause yet to be diagnosed)
Intermittent dizziness
My colon is still problematic I believe
I have had a bowel obstruction due to internal hernia
I have had 3 hernia repairs
I had a major adhesion that twisted my colon badly
I can't gain weight
I battle bowel issues
I developed hypothyroidism this year
I found out recently I have stage 3 liver disease

My lack of diagnosis is the weakness, fatigue, dizziness and syncope that happens several times a day. Just yesterday I was feeling good and we went to lunch where I saw a friend I used to work with. He asked how I was doing because he knows about my health issues. I told him I was doing great that day. An hour later we were at Target picking up a few things and I got so weak and actually short of breath that I barely made it out of the store and back to the car. It took ten minutes to walk 300 yards. I had the cart to hold me up like a walker or I never would have made it. I was in the car three minutes and the next thing I knew my wife woke me up 25 minutes later when we pulled into our garage. I also felt like puking so I layed down and slept for two hours. I passed out one more time that day and twice today. Nobody has been able to figure out why so I am probably going to have my father take me to Mayo after Christmas and go in through the ER. My PCP put in a referral to Mayo Endocrinology a couple months ago and the denied the referral so it is a risk but Mayo is the best diagnostic institution I have ever been around. It isn't close. They are out of this world with their ability and efficiency if you can get in to them. It took five months to get our oldest son in to pediatric neurology but they were incredible once in. I am desperate because I can't work and my life sucks terribly now so I don't see any other options.

Didn't mean to make this about me but I do think for some things we can be very difficult to diagnose.

 

[Razbry]

I wouldn't say I get misdiagnosed but that nobody can seem to diagnose my exact problem. It is my belief that the root cause of most of my issues is my original DS being performed incorrectly giving me too short of an Alimentary limb. This led to malnutrition due to extreme malabsorption. At two years post DS Dr K revised me and it helped my nutrition a great deal but I still battle:
Non iron deficient anemia
Below range Total Protein
Chronic Fatigue
Chronic low BP
Chronic weakness
Chronic syncope (cause yet to be diagnosed)
Intermittent dizziness
My colon is still problematic I believe
I have had a bowel obstruction due to internal hernia
I have had 3 hernia repairs
I had a major adhesion that twisted my colon badly
I can't gain weight
I battle bowel issues
I developed hypothyroidism this year
I found out recently I have stage 3 liver disease

My lack of diagnosis is the weakness, fatigue, dizziness and syncope that happens several times a day. Just yesterday I was feeling good and we went to lunch where I saw a friend I used to work with. He asked how I was doing because he knows about my health issues. I told him I was doing great that day. An hour later we were at Target picking up a few things and I got so weak and actually short of breath that I barely made it out of the store and back to the car. It took ten minutes to walk 300 yards. I had the cart to hold me up like a walker or I never would have made it. I was in the car three minutes and the next thing I knew my wife woke me up 25 minutes later when we pulled into our garage. I also felt like puking so I layed down and slept for two hours. I passed out one more time that day and twice today. Nobody has been able to figure out why so I am probably going to have my father take me to Mayo after Christmas and go in through the ER. My PCP put in a referral to Mayo Endocrinology a couple months ago and the denied the referral so it is a risk but Mayo is the best diagnostic institution I have ever been around. It isn't close. They are out of this world with their ability and efficiency if you can get in to them. It took five months to get our oldest son in to pediatric neurology but they were incredible once in. I am desperate because I can't work and my life sucks terribly now so I don't see any other options.

Didn't mean to make this about me but I do think for some things we can be very difficult to diagnose.

Scott, you know I'm following you. Did you get to Mayo?

 

[southernlady]

Well, for most of us, we have traded being told everything is because we are obese to everything is due to the DS.