This medical journey has led me to believe that M.D. most likely stands for Major Dick.
Dr. Premier said in our last phone conversation that "due to a lack of medical evidence, I could not be given a diagnosis of Porphyria. However, if we explored a reumetological disease (the only type we haven't 'explored') then he could theoretically give me a deferential diagnosis". So with nothing else left as an option, I reluctantly headed to another M.D.
And boy did this guy live up to the name! For blogging purposes he will be referred to as Dr. Flippant, although I am quite tempted to use his first name, last name, middle initial, address, phone number, fax number, a link to his website, a link to his personal bio...
The rules were this: I agreed to go to Dr. Flippant if Dr. Premier agreed to discuss with him personally my case and explain everything I've already been through... in the hopes that I didn't waste my time and my medial insurance's money.
So I make my appointment, complete a novel of new patient paperwork, show up 10 minutes early, discuss my entire health history with his medical assistant - showing her copies of labs, pictures of rashes, pictures of pee, the whole works...and then I meet him. This is how my appointment went:
MD: Hi I'm Dr. Flippant. Why don't you take a seat. (pointing to a chair so he can stand over me, making him feel superior)
ME: (getting off of exam table wearing paper gown) Um, OK.
MD: So I've gone over your records. Why are you even here?
ME: (totally taken aback, thinking he wants a brief history) Well, it all started a couple years ago...
MD: No, I just said I've read your history.
ME: OK, Well Dr. Premier wanted to check for a rare type of Lupus.
MD: Yea, yea, yea. (literally he says this) You don't have Lupus, you've been tested for that already.
ME: (thanks for pointing out the obvious A-hole...Do you think I want to be here) Ok, well...
MD: What I think is going on here, Jan, is that you are on a quest. A quest to find something sinister that doesn't exist. And I think it's time somebody take you out of the medical system so you can start living your life again.
ME: I was very sick, and that's why I'm going to doctors.
MD: You look fine to me.
ME: I wasn't 'fine' just a couple of months ago. When Dr. Premier began thinking I have Porphyria, he took me off of birth control pills, and having the extra estrogen out made a huge difference, but that wasn't long ago. So yes, right now I'm fine.
MD: Well being on birth control pills doesn't affect anything. What are you and your husband doing for contraception?
ME: (oh, are you my OB/GYN now? And what the hell business is it of yours?) Condoms
MD: You know that condoms really limit the male's sexual experience. You should go back on the pill. There's no reason why you shouldn't.
This is where I decided to keep my mouth shut, nod my head, and get the F out of there. By the time I got to my car I was crying, by the time I got home I was fuming mad.
Oh, wow. I'm so sorry that you have to go through this. MY partner (Tara) was having some serious trouble with MD's when she started having porph symptoms, so I (sort of) feel your pain.
ReplyDeleteHave you tried any alternative stuff like yoga, tai chi, acupuncture, etc., or changing your diet? I've been trying to get Tara to do cupping (google it) because I think it would really help.
In any event, good luck! Keep trucking on. Remember, this pain isn't in your head and you *will* find out what is wrong with you. You just need to be your own advocate (which you are) and push until you get some answers.
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ReplyDeleteHow TERRIBLE! I have experienced so many of these kinds of doctors. I emailed you not long ago (pretty much sent my autobio about my dx of porphyria and doctor fun), did you ever get that? Let me know, we seriously need to get in touch.
ReplyDeleteSunshine-
ReplyDeleteThanks so much for your kind words and encouragement! Sometimes that's exactly what you need to hear :) To answer your questions, yes I have tried yoga (passed out during it, haha, no really I did) and I'm thankful to have a chiropractor as a husband so I get adjustments regularly as well as Neuro Muscular Therapy (specific type of massage therapy). This has been helping significantly with the muscle pain and spasms. Thanks for posting! Hope your partner is doing well.
Angelique-
Yes I did receive your email, thank you so much for writing. I'm trying to catch up on writing people back. My husband and I recently moved and I've been receiving an unusually high number of emails recently-which I love-but it's hard to write everyone back right away! I hope you are doing well and I will try to email you back in the next couple of days!
How sick and totally unprofessional is it to make such a snide comment about your husbands pleasure. Ummmm, If you are sick there is no pleasure anyway and OH MY GOD I am pissed off for you UUGGHHHHHHH!!!!!!
ReplyDeleteI am taking my boys to a new doctor next friday. Their urine changes color in the sun and they suffer from classic symptoms as well. My sons have given me new determination. I will NOT take I don't know as an answer anymore. I will respond with "Then you need to find me a doctor that can figure it out!" You will be in my prayers.
Thanks Rene! I couldn't believe I was hearing him correctly either! I felt like I was on a sitcom, the situation was so ludicrous.
ReplyDeleteSorry to hear your sons are going through this as well. Does anyone in your family have a diagnosis? It sounds like they have a good supporter in you!
Jan,
ReplyDeleteWe all continue to test negative. My dad, my sons and me. I have had my blood, urine and feces tested. My boys and have had blood and urine tested.
My sixteen year old has the worst photo sensitivity. His skin feels like it is on fire and he gets little blisters on his face and huge red whelps. My 13 year old's face just gets a huge whelp that covers most of his face, no blisters. We burn very easy.
No one in my family has ever been diagnosed. I actually found it on my moms side of the family while doing family research. I am a Daughter of the Republic of Texas and have done lots of research on my moms side. My family goes back to Queen Mary of Scotts. I saw the Poryphyria and thought "what is that?" First thing it said was "Often misdiagnosed as Lupus." Well of course that got my attention. Then I read the symptoms and said "OH MY GOD!" and the quest for the Holy Grail began.
Oh wow. I feel like I was telling this story myself. I was diagnosed with AIP a while ago and went to the ER during an attack because of the abdominal pain. My visit went pretty much like this:
ReplyDeleteDoc: Well, the tests we did are normal so it's probably your porphyria.
Me: Okay... *waits*
Doc: What? You have pain medicine at home. Go take that.
Me: I did. I took two Norcos. I didn't work at all. That's why I'm here.
Doc: It seems to me you're engaging in drug seeking behavior.
Me: Huh? I do want pain medicine for my stomach, but more importantly, I need to be admitted and treated with glucose and hematin.
Doc: That's ridiculous. Why would you want to be in a hospital. I would only want to be hospitalized as a last resort.
Me: Well, I don't want to die.
Doc: You can't die from porphyria.
Me: Yeah, you can. Is there a hematologist I can speak to?
She then spoke to a hematologist, who admitted me right away. She never came back to talk to me after that.
I'm so sorry you had to go through such a horrible visit. I can not believe the way doctors are acting these days. Yeesh. I hope you find someone better to help you.
I just found your blog today, after only first seeing information about porphyria yesterday. This post spoke to me the loudest, only because I have been treated just like this by doctors too many times. I spent a month in the hospital in May, only to leave with a psychiatric diagnosis, and a doctor telling me that I am "a pretty enough girl who will get enough attention once I get out of the hospital and back into reality." I wish I had grounds to sue her.
ReplyDeleteAnyway, I'm still on the journey towards a dx, and I'm seeing a gastroenterologist on January 29th. I'm going to bring up porphyria and see if it might be worth starting the testing process. I know it's rare, but it just might be what's been causing all of my problems.
In any event, thank you for being willing to share your experiences. It's potentially life-saving information, and certainly helps others feel less alone!
Jess.
jaytee578@gmail.com