Another opinion was Re: GREAT advice!!

[Guest guest]

I think if you do have a doc you've seen a few times, it might help

both of you to tell more about other symptoms. I just saw my gastro

doc after seeing him a week ago for my ulcer acting up - now my neuro

wants to put me on lactulose to reduce blood ammonia levels, so I

just saw the gastro doc again yesterday.

I talked to him about my mitochondrial disease, and he gave me an

extra medication to treat intestinal bacteria that can cause high

ammonia, in addition to the standard lactulose - the new med has only

been out a month or so. Another good thing is that the neuro

prescribed lactulose, a yucky syrup that everybody seems to hate

taking, but I got a powdered form from the gastro doc that doesn't

taste bad at all mixed with 1/2 cup of water.

I'm also on a diet that has given me my first instances of relief

from daily weakness in 10 years, that contradicts the standard diet

for lowering ammonia. So he's able to let me stay on the diet and

monitor the levels - if he didn't know about the mito condition, he

couldn't treat me appropriately.

I am very afraid that the ammonia issue alone will cause my children

to become motherless, so perhaps the idea is that if the patient can

do a little research on how important a symptom is, they can decide

how important it is to " buy in " a specialist not in the mito area.

Another tip - schedule a longer visit with the doctor, they'll be

glad you warned them that it isn't just a 15 minute follow-up. My

son's developmental pediatrician schedules 2 hours visits for new

patients, and 1 hour for current patients. But you can ask for a 2

hour appointment if you want a more thorough update.

A good thing to do is to enlist your primary care doctor or mito

doctor to find you an appropriate specialist who is able to help - no

sense wasting time with someone who can't treat the whole patient.

The only point I agree with is not to " complain " about unrelated

symptoms too much to specialists - many doctors are quick to

diagnose " depression secondary to chronic illness diagnosis " .

Take care,

RH

> I think Gillian gave Adam great advice about not spilling her guts

to the gastro doc(no pun intended though it did work out well). From

a nursing standpoint, I see physicians starting out their days

already behind and soon overwhelmed with patients who have a 15

minute appointment and 30 complaints. Mito is mind blowing to

doctors who hear about it in their genetic rotation and never in a

million years expected to see a confirmed patient.

>

> Automatically a red flag is raised that this person's care is going

to be difficult and they are constantly going to be seeing unusual

complications. A second problem arises when there are so many

specialists involved and A want to do this, but B thinks it will

compromise his care of his system and then C thinks they are both

wrong...once you reach the level that most of you are needing, Alice

is famous for advocating a case manager and now I totally agree and

see why. Medications alone, ordered for five seperate problems from

three different doctors could interact destroy the functioning you

have left, not to mention kill you!

>

> Complicated patients need to be instructed as witnesses in a trial

are. Answer that question and offer no other information. I can

anticipate what direction the doctor is going and what his next

question is going to be...but answering it before he asks only

confuses a tired mind. Always take an updated history and medication

list with you.

>

> Debra

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