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bg - When I was 17 months old, I had a bad stomach flu. My mother, a nurse, could see I wasn't getting better, and it fact was turning a rather unpleasant yellowish-grey. After bringing me to the ER at the children's hospital, she was told to give me Gravol and was sent home. We get home, and she gives me the Gravol. She turns around, and HEARS the sound of air rushing into my lungs as my jaws clamps shut. I had a seizure. So bad, was completely non-responsive. We lived 15 minutes away from the hospital, so my parents drove as the ambulance wouldn't have made it down the dirt road to our house. The whole way my mother was giving me CPR. We got very lucky at the hospital, the doctor on was the children's geneticist! He took one look at me, said "She has AIP", rushed us into a private room and treated me. Bloodwork showed elevated ALAS levels. Positive diagnosis! I responded instantly, but was left with non feeling in my feet and only partial feeling in my legs *this is important*. My father was positively diagnosed shortly afterward. The best treatment I ever had was from the children's hospital, where my name was on the "Admit Immediately" list in triage. /end bg
After many many years of suffering from ER (Adult ER) doctors and nurses telling me that my CONFIRMED diagnosis of Acute Intermittent Porphyria (AIP) is a lie and insinuating that everything is in my head, I have been vindicated!
Since that first seizure, I've had weird spells. Both myself and my mother were convinced I still having seizures, but of course nothing ever showed up during testing because I WASN'T HAVING ONE then.
Symptoms were:
1) zoning out, I know sounds weird -BUT- you couldn't snap me out of it
2) what I call "rainbow sparkles" - lights flashing in front of me
3) sparkles lead to - passing out
4) limbs locking up (once my whole body locked up and I fell out of a chair)
5) NO memory of any of it
6) periodic vomitting afterwards
Flash forward to last month:
I drove myself to work. Got to work, and noticed my head and vision were a little funny. Thinking my blood sugar was low, I ate in the breakroom. Then my left arm started shaking and I had enough about me to know something was very wrong. *after this I remember nothing, I was told after by my manager and doctor*. Apparently my manager came downstairs for something and I had somehow walked to her. By this point, my left arm had curled up on itself and my right had started to shake. I.Couldn't.Talk.Normally. I was skipping words and stuttering. She sat me down and ran to get a senior manager (*ran* being figurative, she was 7 months preggers!) Decision was made that as we were practically next door to the hospital, she would bring me over. We get to the hospital, and I could barely move my legs, apparently they felt heavy. I still couldn't talk, but my arms had stopped shaking. I couldn't even remember my name or age when they asked in Triage.
So once I can talk, and think a bit, the doctor comes in. Asks me question about why I say I have AIP, family history, etc. Then he stops writing, looks at me and says those three words I've wanted to hear my whole life.
"I believe you"
I'm brought into ICU with tears in my eyes. Hooked up to a rush IV of D10, given sugar water to drink and a special high-carb diet for my stay. Also, a prescription for Neurontin... because those spells that I thought were seizures? Were actually seizures. So I'm being treated for non-epileptic seizures (as they are caused by the AIP)
Oh yeah, that important thing up top? This seizure... restarted my nervous system somehow. For the first time in 25 years, I can feel my feet.
Doctor, you who believed me, made sure the charge nurse was looking after me and everyone in ICU had a printout of AIP, have returned my faith in the medical system. I may have lost of drivers license until I am seizure free, and I may not be able to work until I get clearance, but I am happy that you stopped to listen instead of calling me crazy.
After many many years of suffering from ER (Adult ER) doctors and nurses telling me that my CONFIRMED diagnosis of Acute Intermittent Porphyria (AIP) is a lie and insinuating that everything is in my head, I have been vindicated!
Since that first seizure, I've had weird spells. Both myself and my mother were convinced I still having seizures, but of course nothing ever showed up during testing because I WASN'T HAVING ONE then.
Symptoms were:
1) zoning out, I know sounds weird -BUT- you couldn't snap me out of it
2) what I call "rainbow sparkles" - lights flashing in front of me
3) sparkles lead to - passing out
4) limbs locking up (once my whole body locked up and I fell out of a chair)
5) NO memory of any of it
6) periodic vomitting afterwards
Flash forward to last month:
I drove myself to work. Got to work, and noticed my head and vision were a little funny. Thinking my blood sugar was low, I ate in the breakroom. Then my left arm started shaking and I had enough about me to know something was very wrong. *after this I remember nothing, I was told after by my manager and doctor*. Apparently my manager came downstairs for something and I had somehow walked to her. By this point, my left arm had curled up on itself and my right had started to shake. I.Couldn't.Talk.Normally. I was skipping words and stuttering. She sat me down and ran to get a senior manager (*ran* being figurative, she was 7 months preggers!) Decision was made that as we were practically next door to the hospital, she would bring me over. We get to the hospital, and I could barely move my legs, apparently they felt heavy. I still couldn't talk, but my arms had stopped shaking. I couldn't even remember my name or age when they asked in Triage.
So once I can talk, and think a bit, the doctor comes in. Asks me question about why I say I have AIP, family history, etc. Then he stops writing, looks at me and says those three words I've wanted to hear my whole life.
"I believe you"
I'm brought into ICU with tears in my eyes. Hooked up to a rush IV of D10, given sugar water to drink and a special high-carb diet for my stay. Also, a prescription for Neurontin... because those spells that I thought were seizures? Were actually seizures. So I'm being treated for non-epileptic seizures (as they are caused by the AIP)
Oh yeah, that important thing up top? This seizure... restarted my nervous system somehow. For the first time in 25 years, I can feel my feet.
Doctor, you who believed me, made sure the charge nurse was looking after me and everyone in ICU had a printout of AIP, have returned my faith in the medical system. I may have lost of drivers license until I am seizure free, and I may not be able to work until I get clearance, but I am happy that you stopped to listen instead of calling me crazy.
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