[jennifer774477]

I am in a medical emergency. I had my first porphria attack from taking pharmaceuticals. I sufferd seizure and heart failure. I was treated with more pharmaceuticals at hospital and am in my second attack. I was unsucessful in my attemts to educate hospital staff and protect myself from inappropriate treatment. If I have seizure and heart failure again I will be unable to access life saving treatment safely. I am awaiting test results and trying to get in to see a specialist in order to resolve the problem. Meanwhile I am trying to avoid seizure. Drinking water was helping me to eliminate the pharmaceuticals that provoked the attack, and was helping with the severe painful skin burning symptoms(I have no tolerance of any form of light-not a window or even a light bulb, can not wear clothes or be touched, spent weeks naked under a sheet covered in ice packs)I am suffering neurological symptoms, muscle weakness, ringing in the ears, foaming at the mouth, auditory disturbances, fainting, nausea,painful bowel movements as well. At hospital my porphria was ignored, my neurological symptoms mistaken for psychiatric and they believed I gave myself heart failure through poor behaviour(water drinking). My refusal to eat processed junk foods and demand to have the natural organic foods my husband brought me was interpreted as eating disorder. They believe eating organic vegetables ,grains, meats and eggs instead of cookies , canned soup, tea and coffee is dangerous and can provoke heart failure. They are able to take ideas like this and use them to deny me my human rights and much needed medical care, and force porphria provoking drugs on me against my will. I don't know what I can do. I am eating a perfect high carb organic diet, and minimizing water drinking because of the way it effects salt levels. With porphria salt levels drop which leads to heart failure. I am trying to keep my salt level up. Less water is making my skin symptoms bad but I must avoid the hospital. Does anyone know if I can protect my human rights some how?

[weegot5kiz]

Hello Jenn and welcome to Neuro Talk, sorry about all you are going through, I have tried to find where you might want to post question on the porphryia, looks like neuropathy forum may be a start, hopefully someone else will have a suggestion.

I can however post a link for the Seizure forum, they may be a starting place for asking questions. Do not hesitate to ask around the forums, you will find folks here are helpful and kind.

here is the link for the epilepsy forum

http://neurotalk.psychcentral.com/forum11.html

here is the link for the main forum index, again welcome to NT

http://neurotalk.psychcentral.com/index.php

[ali12]

Hello and Welcome to Neurotalk Jennifer - you will meet many great and supportive people here!

I am so very sorry to hear about everything that you have and are currently going through I hope you can get some much needed answers real soon!

If you need anything, please don't hesitate to ask - I am more than happy to help you in anyway I possibly can!

Again, Welcome to Neurotalk, I look forward to seeing you around the Forum soon!!

Alison.

[Bannet]

Hi Jennifer and Welcome.

I'm really sorry that you have to deal with so much. I'm sorry I don't have an answer for you but someone might.

I wish you much luck!

[pabb]

i am not sure about the legal aspect,,,i would consult with a lawyer...unless you have been Baker Acted or what ever the eq is in your state/prov. you cant be forced to take a med....keep you husband inolved as much as possible.....yes excess drinking can be a psych symptom which is why they were going there, the fact that you now understand that you cant do that, should help you prove your rationality......good luck

[Kitty]

Hi Jennifer and welcome to Neurotalk. Wow, you've been through quite an ordeal. Everyone who's responded has given you some good advice and starting points here in this forum. I'm not sure of the legal aspects of it all - guess it depends on the state you live in - but I'd seek the advice of an attorney.

[pabb]

try the search function, there are more than a full page of threads with at least the mention of porphyria.....i didnt read them so cant qualify their worth, but cant hurt

[Elissabetta]

I am so sorry you have to go through this ----one of the things that emergency doctors would say to me during my episodes of panic attacks, depression, etc. was "you sound so rational"..... as I try to "keep my head" at all costs ( which can be difficult at times)....as I was once in outpatient and ran into a doctor that, I think, wanted to keep me as a "permanent" client....I am very very suspeptible to drug reactions, good and bad....and thank God, I have an MD that listens to me...but dealing with some heavy duty depressions lately(see my previous posts for the rest of what I deal with) I have found a new P-MD who put me on a medication that I have had a bad reaction this morning...if a person "keeps their head" if able, when talking with emergency or doctors, the less likely they will try to "force" you to take medications you don't want. Ask for the patient's bill of rights at the hospital when you go...you DO have rights...and I am blessed with a supportive husband that will stand by me...I am in a mess today emotionally due to myself not standing up to my new doctor and making him realize that I need to start on a much lower dose for a longer period of time(he wants to put me up to 200 ml of this drug within two weeks)...and I can't handle even 25ml without panic attacks, nightmares, etc....get the patient's bill of rights, laminate it and take it with you wherever you go ---call an Ombudsman if necessary...hang in there girl.....E.

Originally Posted by jennifer774477

I am in a medical emergency. I had my first porphria attack from taking pharmaceuticals. I sufferd seizure and heart failure. I was treated with more pharmaceuticals at hospital and am in my second attack. I was unsucessful in my attemts to educate hospital staff and protect myself from inappropriate treatment. If I have seizure and heart failure again I will be unable to access life saving treatment safely. I am awaiting test results and trying to get in to see a specialist in order to resolve the problem. Meanwhile I am trying to avoid seizure. Drinking water was helping me to eliminate the pharmaceuticals that provoked the attack, and was helping with the severe painful skin burning symptoms(I have no tolerance of any form of light-not a window or even a light bulb, can not wear clothes or be touched, spent weeks naked under a sheet covered in ice packs)I am suffering neurological symptoms, muscle weakness, ringing in the ears, foaming at the mouth, auditory disturbances, fainting, nausea,painful bowel movements as well. At hospital my porphria was ignored, my neurological symptoms mistaken for psychiatric and they believed I gave myself heart failure through poor behaviour(water drinking). My refusal to eat processed junk foods and demand to have the natural organic foods my husband brought me was interpreted as eating disorder. They believe eating organic vegetables ,grains, meats and eggs instead of cookies , canned soup, tea and coffee is dangerous and can provoke heart failure. They are able to take ideas like this and use them to deny me my human rights and much needed medical care, and force porphria provoking drugs on me against my will. I don't know what I can do. I am eating a perfect high carb organic diet, and minimizing water drinking because of the way it effects salt levels. With porphria salt levels drop which leads to heart failure. I am trying to keep my salt level up. Less water is making my skin symptoms bad but I must avoid the hospital. Does anyone know if I can protect my human rights some how?

[FranksAngel]

hello jenn and welcome to neurotalk ... first let me say that you have the right to question any and all treatments given you before they are actually carried out ... you also have the right to ask for another doctor if the one currently treating you is not "listening" ... you have the right to refuse treatments too ... i am so sorry for all that you have had to go through and are currently going through ... check out the forums here and post where you feel comfortable ... if i can help in any way please just ask ... i will do my best to assist you ... and again ...

[dorrie]

Welcome to Neurotalk!!!!!