I am back from the "H?pital"

[MightyMouse]

I had a dream last night that I sent my big file box of articles on dysautonomia and all my books to your hospital in Quebec... and at the bottom of the box, I put a note:

I am sending these at my own expense in the hope that you will read them and learn about this group of disorders... I have done so after hearing from my friend Ernie, who you sadly "treateted" by deciding to blame as a psychiatric case rather than follow the logic of science. I have chosen to take this action so that I can be assured that your actions were meerly lack of knowledge in the subject area rather than an abject disregard for my friend's health."

I really dreamt that! Made me feel a little better anyway. I'd do it in real life if I didn't think they'd just dump everything in the "casier du r?utilisation" (recycling bin). Better in one's dreams then no where at all!

Ernie, Je vous souhaite la bonne sant? et curatif...et pour nous tous.

Nina

[MightyMouse]

Oh, I should translate that for those who don't know much French... it says "I wish you good health and healing... and for us all."

And if you ever need to translate something from a common language, you can do it for free online at http://babelfish.altavista.com/

Bummer for me that they don't have Croatian in there! I had to pay for a decent translation program so I can understand the webpages I read...and emails from Croatian relatives.

Nina

[yogini]

Ernie,

I am late in responding, and the others have already captured my thoughts. C'est incroyable!! I am so sorry that you had to go thru this, and I think you are handling it very well. You have many friends on this site who believe in you. I hope your other doctors can get to the bottom of things.

-Rita

[avais1]

Hi Ernie. Your post left me speechless. I can't express enough the amount of frustration I felt for you.

I know it was painful, but thank you so much for sharing this story. It is good to have these things documented, so that one day, when we have a cure for this stuff, people will know the struggle of the early pioneers!

It wasn't in vain, we have all learned from your experience. Way to go Ernie!

[Ernie]

Hi,

I waited until today to answer because I was intelectually exhausted and I wanted to take the time to read your answers again and meditate on them.

EM I really enjoyed your comparison to a heroine. Makes me feel "important". I was looking at James Bond movies during my stay at the hospital. Maybe it inspired me!

Runnergirl, the fact that I went to NIH and that Dr Goldstein knows I am sick strenghtens me. Dr Basil suggested that I look into neurology and he said that there was not research protocol for my kind of muscle problem at NIH. When we gave them my brother's body we asked them to look for the cause of the muscle problem but they said that they cannot test because they need a living person for those tests. I will call them in the few next days to find out if they have any more suggestions.

Stacey, this is exactly why I refused the Psychiatric evaluation because I know how easily they could diagnose me with conversion disorder, Munchaussen or psychogenic paralysis.

I like your dream Nina. Never know. Maybe it did change something in those doctors reality. I asked the Resident a few minutes before leaving if he would like to get the report from the doctor who finds what I have. He kept repeating I have nothing. I told him that I will never give up searching until I find the answer. They must be annoyed or nervous about what I am going to do.

What surprises me the most is that they refused to read Dr Goldstein's report, pretending that I stole another patient's file and then in their report they said that I did not need any medication. I wonder on what criteria they decided that I don't need medication. Even when I went to Vanderbilt, Dr Robertson did not change the formula that Dr Goldstein had built.

I appreciate your volunteereness in helping me. Seeing the way they reacted when I showed them my NIH file putting it back on my desk as if it was a piece of crap I would not be surprised that they did the same thing with your information. These doctors are just so full of themselves.

Strangely a nurse told me to research the net to find a doctor outside Canada to test me. I think he was the most intelligent employee of the hospital!

I am glad if I was able to help any of you by sharing this period of my life.

I took all my meds today.

I even went to shop for an electric wheelchair and I got an estimate: 10,000$. I will submit it to my insurance company next week and should get an answer within the next month. This wheelchair is really confortable and versatile. It turns on itself, the seat lays flat and the legs raises. Just what I need. It is controlled *** a joystick which I will need to practice before getting good at it.

Love

Ernie

[Amy]

Ernie,

I haven't met you either as I am brand new to this site. I am sorry for the treatment you got. On a previous hospital stay I went through something a kin to what you did only not nearly as bad. Good for you for standing up for yourself. I am so glad there is this site as you and I and any others out there with this syndrome need support and it appears there is great support here. Stick with all of us. I will be thinking of you! I can't sleep at night anymore so here I am!

[LindaJoy]

Hi, Ernie,

Maybe it has to do with the fact that the staff was nice to me or that I was able to refuse the Psychiatric evaluation and stand up to the doctors.

I read through the additional comments to your post today, and this line from one of your emails stuck with me. I understand completely when you say that it helps that you stood up to the doctors. When I was in the ER this last March after a severe tach spell, when I was first falling into a POTS hole, my heart rate wouldn't come below 140 and I felt awful. The ER doctor wanted to send me home because all of my tests were normal. I looked dead in his face, and for the first time in ten years of having POTS problems, I said, "I'm not going anywhere. I came in here in tach, I"m still in tach, and you don't know why. I'm not going anywhere until you figure it out, or at least until my heart has slowed down." He tried and tried to get me to leave, but I wouldn't go. Finally, I was admitted, then made my own way to the Cleveland Clinic. Anyway, it felt SOOOOOO GOOOOD to finally stand up for myself, even though I got no answers. It was like I was saying, "Yes, I'm ill and I'm tired of being brushed off like I'm not. You're the inept one, not me, now do your job and quit blaming me." It felt good. I totally understand your little victory. It's that strength that will get you through to finding a knowledgable doctor. It's that strength that keeps all of us with POTS going.

Ernie, know you're in our thoughts. Keep in touch with your progress. I hope your insurance pays for your wheelchair. What independence that would mean for you!

Blessings,

LindaJOy

[MightyMouse]

Hi Again Ernie,

Is there any kind of formal complaint process for medical issues in Canada? Perhaps you can help yourself with some closure by filing a complaint? And, I would probably want to make sure my complaint is somewhere associated with any medical record that comes from that provider.

Here in the states, each state has a medical license board that hears complaints and may respond with anything from nothing, to a written reprimand, to a loss of a medical license. And, if there is medical negligence or malpratice, the issue is then referred to the legal system to determine the outcome. While there a many nuissaince cases in the malpractice area, there are some that truly horrific miscariages of medical care (or lack thereof).

[Miriam Poorman-Knox]

I'm SMOKEd!!!!!!!!!!!!!!!!!!! See if there are patient advocates there. I would also contact the medical society there whatever the equivalent is. Additionally I would file a formal complaint with the director of the residency program the resident was from. Certainly NOT ereading the file is inappropriate, the care unprofessional, uncaring. Also the resident came with a preconceived diagnosis. I do know that a committee will recview this. We are going to the program directors meeting this year and the Canadian residency program directors come. In precious discussions, I do know that they must follow this process, and this will be in the residents and whomever else resp. file.I am so so sorry. Miriam

[Guest Julia59]

Ernie,

I have met you---and you certainly don't look or sound like someone who wants to be in hospitals, nor do you enjoy feeling the way you do. Oh my goodness----I think THEY are the ones who need some psychological help---AND FAST!

I know you won't give up, and you will find answers to your muscle problems. I could go on and on about the ignorance in a lot of medical professionals, but I know you and everyone else on this board have heard my vents about this subject before, so I will spare you.

I have had this same treatment, but not to that degree. Right in the very hospital where Dr. Grubb works, I have been in the ER three times and no one had a clue. Even recently, the neurologist I am seeing to evaluate my neurological function related to my spinal issues had to throw in a question on weather or not I have had a psychiatric evaluation. I told him Dr. Davis keeps an eye on my psychological/emotional issues due to the IGNORANCE in the medical community on dysautonomia and chiari malformation, as both of these conditions have been dismissed.

I can only imagine how terrible it must have been to have this ignorance in your face once again. I pray for you all the time in hopes that you will find the best treatment to improve the quality of your life.

You know that we are all rooting for you, and eventually you will have the respect you deserve from the medical community. I hope you can make it to your appointment to see Dr. Grubb. I know it's a tough trip, and May is just around the corner. Please let me know if there is anything I can do to make your trip a little easier for you---as you know i'm just a few blocks away from his office, and it would be nice to see you again.

Take Care,

Julie :0)

[Ernie]

Hi,

Linda, you did a pretty good job of standing up for yourself! It's sad that it took your years of misery to get proper testing.

Nina, I am waiting until I get my medical file to see if I will make a complaint. It will depend on what will be written. I have made some complaint 2 years ago and it did not do much. It was concerning the Munchaussen diagnosis. The problem here is that doctors are government employees and the complaint office is also government. You wouldn't believe all the horror stories that goes on in the hospitals (ie patients dying in ER corridors because triage nurse did not realise that it was critical, etc.) Doctors get away with it.

Julia, that is pretty bad that they still come up with a psychiatric evaluation with all the medical proof that you have. I did not realise that you had such bad treatment in Dr Grubb's own hospital. I remember when I went to see him, I fainted in the book store and was rushed to the ER under Dr Grubb orders. I had to pay 500$ for the ER doc who just listened to what Dr Grubb ordered (an IV). The ER doc did not seem to know what Dr Grubb was talking about but I least he followed his advice. I had the impression that I was paying the ER doc to learn about my disorder. He should have been the one to pay me!

I just can't wait for the time where I will be able to show the doctors who misdiagnosed me the incontestable proof that I have a physical disorder.

I will be pleased to meet you again Julia. I enjoyed my visit with you last time. I might wait until October to go. I have to decide soon what I will do.

Ernie