Discussions By Condition: Rare Disases

Doctors aren't taking my Acute Intermittent Porphyria seriously. Please help.

Posted In: Rare Disases 2 Replies
  • Posted By: Candycane
  • December 22, 2010
  • 10:54 AM

Hello everyone,

I was diagnosed with Acute Intermittent Porphyria about a year ago. I've since had two attacks, not counting the first one that brought me the diagnosis. The first and second attacks happened in Hawaii, and the doctors there were great. They treated me with glucose, and panhematin, and made sure my pain, nausea, and neurological symptoms were under control. When my doctor there retired, he gave me the diagnostic paperwork and made me a card that listed which medications to give me during an attack, and which medications were absolutely contra-indicated.

I moved to California because my fiance is a Marine and he got stationed in San Diego. I had an attack recently and had a horrible experience. I went to the emergency room and told the doctor I was having an acute attack. She ran some tests to make sure it wasn't anything else. All her tests were normal. The tests done were the standard CBC, chem panel, etc.

I take hydrocodone on a semi regular basis. I have the hydro 10/ APAP 325 so I get the least amount of tylenol possible. At any rate, the ER doctor looked up my prescription history, saw the hydro scripts, and told me I was engaging in drug seeking behavior. After half an hour of arguing and justifying my usage, she finally gave me some pain medication. I was more concerned about getting proper treatment, so I told her I needed to be admitted so I could be treated properly. This apparently led her to believe I was attention seeking so she said she wasn't going to do anything else until I spoke with a psychiatrist. I agreed. The psychiatrist confirmed I was not drug seeking, attention seeking, or anything else. Finally I was admitted.

I gave the hospitalist my card and he completely ignored it. He wouldn't give me the amount of pain medicine I needed (I usually get 3 mg Dilaudid every 4 hours. He gave me .5 mg), he gave my Zofran for nausea even though Phenergan is more effective for me, and would not give me a sedative to sleep (I have sleep disturbances during attacks) He also took two days to start the hematin. This resulted in me being unable to eat, drink, or sleep at all for 7 days, as well as uncontrolled pain that caused me to cry hysterically for hours each day.

Needless to say, I went in search of a doctor who could serve as my regular doctor here in California so this wouldn't happen again. Unfortunately, I can not find my test results. I do have the card my doc gave me, signed by him. I'm currently trying to figure out how to get another copy, but it's proving to be difficult since my doc retired. Also, each doctor I talk to requests a copy of my hospital records from that last visit. I don't know what those records say but after they read them, they are convinced that I'm either making it up for attention or drugs, or that I have something else.

This is very frustrating and I'm very worried about having another attack and having a similar experience, or perhaps even being denied treatment, especially the hematin and glucose. Right now, the only thing I can think of is getting a genetic test done. The problem is that it costs 1850 dollars and I don't have that kind of money. The urine tests can only be done during an attack. If anyone has any advice that might help me get a doctor to listen and take me seriously, I would be very grateful. Thank you in advance.

PS: I'm sorry this is so long.

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2 Replies:

  • If you have insurance...there is a great Doctor in Tarzana California by the name of Dr. Jeffrey Galpin that specializes in this disorder. Contact him. Maybe he can help you or out you in contact with a physician in San Diego. Best to you!Hello everyone,I was diagnosed with Acute Intermittent Porphyria about a year ago. I've since had two attacks, not counting the first one that brought me the diagnosis. The first and second attacks happened in Hawaii, and the doctors there were great. They treated me with glucose, and panhematin, and made sure my pain, nausea, and neurological symptoms were under control. When my doctor there retired, he gave me the diagnostic paperwork and made me a card that listed which medications to give me during an attack, and which medications were absolutely contra-indicated.I moved to California because my fiance is a Marine and he got stationed in San Diego. I had an attack recently and had a horrible experience. I went to the emergency room and told the doctor I was having an acute attack. She ran some tests to make sure it wasn't anything else. All her tests were normal. The tests done were the standard CBC, chem panel, etc.I take hydrocodone on a semi regular basis. I have the hydro 10/ APAP 325 so I get the least amount of tylenol possible. At any rate, the ER doctor looked up my prescription history, saw the hydro scripts, and told me I was engaging in drug seeking behavior. After half an hour of arguing and justifying my usage, she finally gave me some pain medication. I was more concerned about getting proper treatment, so I told her I needed to be admitted so I could be treated properly. This apparently led her to believe I was attention seeking so she said she wasn't going to do anything else until I spoke with a psychiatrist. I agreed. The psychiatrist confirmed I was not drug seeking, attention seeking, or anything else. Finally I was admitted.I gave the hospitalist my card and he completely ignored it. He wouldn't give me the amount of pain medicine I needed (I usually get 3 mg Dilaudid every 4 hours. He gave me .5 mg), he gave my Zofran for nausea even though Phenergan is more effective for me, and would not give me a sedative to sleep (I have sleep disturbances during attacks) He also took two days to start the hematin. This resulted in me being unable to eat, drink, or sleep at all for 7 days, as well as uncontrolled pain that caused me to cry hysterically for hours each day.Needless to say, I went in search of a doctor who could serve as my regular doctor here in California so this wouldn't happen again. Unfortunately, I can not find my test results. I do have the card my doc gave me, signed by him. I'm currently trying to figure out how to get another copy, but it's proving to be difficult since my doc retired. Also, each doctor I talk to requests a copy of my hospital records from that last visit. I don't know what those records say but after they read them, they are convinced that I'm either making it up for attention or drugs, or that I have something else. This is very frustrating and I'm very worried about having another attack and having a similar experience, or perhaps even being denied treatment, especially the hematin and glucose. Right now, the only thing I can think of is getting a genetic test done. The problem is that it costs 1850 dollars and I don't have that kind of money. The urine tests can only be done during an attack. If anyone has any advice that might help me get a doctor to listen and take me seriously, I would be very grateful. Thank you in advance.PS: I'm sorry this is so long.
    Anonymous 42789 Replies
    • January 5, 2011
    • 06:48 AM
    • 0
    Flag this Response
  • If you have insurance...there is a great Doctor in Tarzana California by the name of Dr. Jeffrey Galpin that specializes in this disorder. Contact him. Maybe he can help you or out you in contact with a physician in San Diego. Best to you!
    Anonymous 42789 Replies
    • January 5, 2011
    • 06:49 AM
    • 0
    Flag this Response
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