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I am back from the "H?pital"


Ernie
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Hi everyone,

I just came back from the hospital a few hours ago. I read the post that Corina wrote on my behalf. Thank you all for you support and prayers. You have made me stronger. Thanks Corina for writing my update.

I was at the hospital for a week and I did 2 main tests, EEG, EMG which were both negative. They took my BP supine and standing (15 seconds) because they did not want to risk me fainting. I was very cautious to avoid syncope because I was going there for the paralysis and muscle weakness and I did not want them to confuse my problems.

When I arrived I told him that I had NCS and POTS with high adrenaline levels but they never caught on.

On Sunday I felt that my neurologist was helpless in helping me and I was very concerned about what she was going to do next.

On Monday afternoon the Resident came to visit me and he offered the only solution: A Psychiatrist!

I told him that I did not want to see a psychiatrist if all my tests were negative (they never measured my catecholamines) because he would already be biased about my having a mental disorder. He told me ?no, no don?t see it this way. We want to help you. Trust me.? I told him that I have the medical proof that I have something going wrong in my body ?Adrenaline?. He said that I never mentioned it before. I said that I told him when I was admitted on Wednesday. I told him that my cardiologist hypothesise that the potassium leaves my muscle cells when I have adrenaline rush but he does not have the equipment to test it and does not know where I should go.

I told him that I would accept to see the psychiatrist only if they have the medical proof that I am physically sick. I told him that I already have medical proof that I am physically sick and that he could test my catecholamines himself if he did not believe me. He said that there are still many tests they could do including muscle biopsy or an autopsy. I told him that I would skip my turn as I have already given my brother?s body for research purpose last April 10th. I couldn?t believe that he was such an ignorant as to suggest that I get myself autopsied!

He said that they wanted to save time and schedule me for Tuesday (yesterday) with the psychiatrist. I said that I did not want the consultation. So he told me to think about it and he would come back the next morning to see what I have decided. Well, he never came to get my answer. The psychiatrist entered my room and sat in chair and asked me if I could wake up enough to answer her questions. I told her that I do not accept her consultation. She left the room immediately and I could feel that she was so upset.

Within 30 minutes my specialist came (also angry at me) to tell me that I had to leave the hospital. I asked her if she could refer me to an endocrinologist since it was clear that I had an endocrinological problem. She did not want to. I said that this would be much more efficient than seeing a psychiatrist. She said no again and told me they needed the bed and I had to leave. I asked her if I could leave the next morning because my ride had 6 hours of driving to do and it was 3:30 p.m. (my friend had the flu and was not in shape to drive). They accepted.

At 8:00 sharp this morning the Resident came to see me again and told me that if I wanted to see the psychiatrist I could tell them at anytime and they would call her back and I could stay longer at the hospital. I said that it was too late to change my mind because my friend had already left home and was on her way to come and pick me up.

I handed my American medical file (NIH) where I have all the proof that I have a physical disorder and the doctors did not want to look at it. They asked me who?s file it was! I said that it was mine. She gave it back to me as if it was ?contagious?.

I got my release report. I was shocked by what I read. They say that I have no disorder (no POTS and NCS), that my muscle problems are psychological, that my secondary gain of having these symptoms is because I like ?being sick?, I like being hospitalised and being tested. And the best one: Recommendation: STOP ALL MEDICATIONS.

I am glad that I refused the psychiatrist because they would have invented anything to close my file and I would have started to have problems getting proper treatment (IV) at the Ers again. I took me 3 years to clear my file of the other psychiatric report and I am not ready to start this nightmare again.

The medical staff and the people in general were really nice with me but I seldom asked them anything. The nurse only came to deliver my pills and take my BP. One nurse told me to look on the internet and find a doctor in another country because here in Quebec research is worth peanuts. That reassured me. He also told me that I don?t look like a psychiatric case. It was sweat of him to tell me because I felt so bad.

At first I did not want to post about it because I was ashamed but after talking to my friends I decided that I would share this part of my life with you.

I don?t know what to think of all this. I expected to have many specialised tests and I ended up having tests that my PCP could have ordered himself. It is so difficult to get proper testing and treatment.

Ernie

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oh ernie!!!!

that is absolutely HORRIBLE. i am horrified by what happened to you...i just don't even know what to say.

i haven't been able to get logged on much at all...and checked in just now...your post was at the top and i smiled b/c you wrote 'l'hopital.'

i saw the post was long and verbose (;)) and was all excited to hear your news...and then i started reading and was so very upset for you.

i just can't even believe it. i really thought you'd get something that would help you...i just felt like it was your turn to get some answers and some help for all of your struggles.

i just wanted you to know that we here know how much you want to get better and how hard you work to stay informed and find answers.

so, i know at first you were ashamed to post, but i am very grateful that you did and could reach out here...

i am sending you extra hugs and prayers tonight.

i just very, very sorry that this happened to you. i wish i had more words of wisdom...but luckily there are many wise people on this site who can fill in for me! since i am not very wise. just silly!

please hang on ernie...something good has to come your way...

hey, i see steph and i are posting at the same time...maybe she said something wiser than i!

emily

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Oh Ernie,

I am hopping mad for you. I cannot believe how you were treated -- like a third-class citizen. I am so angry at doctors and health care professionals who assume that because your tests are normal, that nothing is wrong with you -- that it must be psychological. Modern medicine really is in its infancy. Despite being able to perform quadruple bypass surgeries and transplants, there still is very little known about diseases like diabetes, autoimmune conditions (MS, rheumatoid arthritis, etc.), and many conditions that affect women in particular. Also, EVERY illness is mental AND physical. We are one body. There is no separation of mind and body, because without one, the other couldn't survive.

I know you are limited in terms of money and resources, but I hope you call Dr. Grubb's office, since he's seen you before, and ask for advice.

Amy

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I'm speechless and a little sick to my stomach after reading about your experience! I'm sooo sorry you went through that Ernie! I'm floored by the way you were treated..I just don't understand how people can be so infuriating ;) .

I just wanted to letcha' know you're not alone in this...here's hoping you get some peace soon!

Michele

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Ernie,

I am new to the forum and you haven't met me yet, but I wanted to add my words of encouragement. I am glad you shared your story because I think you will be encouraged by all the support and reminders of the TRUTH. You KNOW you have a physical illness but we all reinforce that truth with you!

I am so sad that you were treated this way and I am glad you had the strength and insight not to be pushed around and to stand up for yourself.

Praying with you that you will find the help you need.

Roselover

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Ernie, GRRRRRRrrrrRRRRRR.... that makes me so mad! I can't believe ANY medical professional ANYWHERE would treat you this way!

I'm so sorry and wish I could say something to help... ;) I send you big hugs. Nina

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Ernie

This is the kind of treatment that has always made me angry and frustrated. It's the drive in my desire ;)

You've been down before. The NIH put you in a better place, trust them and maybe go back to them about your muscular problems.

Have you contacted anyone recently at the NIH about anything they might have found with your brother?

This is a temporary set back, take some time, brush yourself off and come back fighting; that's my motto!

Steph

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Hi Ernie,

well, is there anything more to say? What I want you to know is that I'm very proud of you that you stood up for yourself, and I'm glad that you didn't come out of the hospital any worse than you got in (physically I mean). I hope all these words from your POTSfriends will boost you up so that you can straighten your back and move forward again. You do need to find out what's wrong with you, because getting paralyzed (spelling?) is very scaring and dangerous (especially in the bathroom or in traffic). Oh, btw, you did take your meds today didn't you ;)

Corina

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ive been there too - i cant stand the arrogance - the assumption that if they cant find what is wrong from the most cursory of examinations then it must all be in your head.

I finally found a dysautonomia specialist and i was surprised with the amount of odd symptoms that he was aware of that I had never mentioned to any doctor becuase I knew they would think me mad.

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I am just so angry by your mail. It feels as if I was with you every step. It is disgusting and disappointing how naive our medical "experts" are. Way to go with her fighting spirit. Imagine what they would have done to you if you let them. What an inspiration you are. I want you to think about something. I always say no one can upset you in life if they don?t mean anything to you. These are just everyday people who emotionally abused you. They mean nothing to you and there for just walk away from it and don?t even think about their stupid opinions again. They don?t matter in your life. I know about the abuse you talking about. We all feel for you. Just keep searching for a medical person with true knowledge. As for your strength just pray. All strength comes from the Lord. He is the only reason I have made it so far in my life. We all know how hard our lives can be.

I send you a hug and next time you go to hospital, just phones us all we will sort the doctors out for you. Let them try and tell all of us that rubbish.

Look after yourself and forget about this experience. ;)

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Guest tearose

OH NO!!! Ernie, you poor dear. I am so upset for you. We had so much hope that they would be helping you! Oh how frustrating. I am so sorry that you had to go through this!

I hope you are proud of yourself for being firm about the facts! I am glad you refused the psychiatrist

Good for you for being strong and insisting THEy WERE IGNORING THE REAL CRISIS! Your body is not physically able to maintain you with a "regular" life.

Why this happens to us over and over again..it is unbelievable! Do these doctors really think we WANT to be limited in our activities? that we want to be homebound? Many of these doctors do not have any idea that we have the hope and the desire that "this day" will be better..but it is not a mental cause for us but a little understood physical problem!

You even had the testing reports with you!!!

I think I would be on the phone with the hospital administrator and let them know they wasted your time and energy for NOTHING but aggravation. You also had to depend upon the kindness of a friend for transportation. You should go on record saying that they 1) treated you demeaningly 2) refused to examine the real problems due to their ignorance and prejudice and 3) You are not better off after this experience but rather WORSE from this experience and expect that they should now help you find the appropriate center to test you OR they should recommend that Canada's medical system send you to the Mayo Clinic in MN for appropriate testing and diagnosis!!

Please rest up and let us know what you think you need to do next.

warm, healing and supportive wishes, tearose

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Ernie,

So sorry for the horrible way you were treated. I've been told, like so many others on here also I am sure, that it is physcological problem with me, though no one can directly relate the symptoms to any type of mental disorder with me. Surely in my case anxiety worsens some symptoms and may possible bring on some other symptoms but not all, and not what initially sends me into an episode!

I am so glad for those who have found dr.s who are knowledgeable and willing to help and hopefully for the rest of us, we will at some point, find someone for us also.

I think it took a lot of courage to not admit defeat right then and there, and kudos to you!!

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Ernie

Thanks for letting us know all that happened. I am very sorry, and also angry. I was so hoping you were going to finally get an answer to the episodic paralysis. Instead you get to be told that you enjoy being sick.

I had almost precisely the same experience when I was hospitalized, except that I was diagnosed with POTS. The nurses were great, but the attending doctor was incredibly mean to me, and believed that what I needed was psychiatric treatment--said I was a "classic case"--and even got my husband to believe it. So, at some level, I know how frustrated and defeated you must feel.

Your inner strength continues to be an inspiration to me. It's a lot more than I had when I was very sick.

I hope you can get back to the U.S. for more testing at a hospital with expertise in autonomic dysfunction. You need answers.

Katherine

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Hi,

I am reading and re-reading your answers. It is so very uplifting. I did not want to get up this morning but I thought that if I looked at what you said to me I would feel better. I am still processing what happened.

Thank you so much for your support.

I will read the posts that I missed during my stay to catch up on you guys.

Ernie

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Ernie, my computer was down all day yesterday. I am so sorry. I guess we can't just blame American doctors for being insensitive and sometimes REALLY stupid. :D It seems to be an epidemic all over. I am so very sorry you had to go through this. This is one of those times you wish your illness on everyone one of them for awhile, so they can "enjoy" being sick and getting attention and get files put in their records that say they're crazy, then be happy, right? It is so awful to be treated this way, by anyone, let alone doctors! Just remember that every one here knows you are very ill, no one here, or anyone that's important thinks those things. That's all that matters Ernie. The rest of them are just useless dunder heads. I know this must have been a horrible blow for you, but just consider the sources and hopefully you can recover quickly! Hugs coming your way. morgan

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Ernie, I am very angry and sad on your behalf. You did everything RIGHT and they did everything wrong. I applaud you for standing up for yourself and refusing the physchiatrist consult. Unfortunately, your record probably still shows that you needed one and refused it. I would request a copy of your records.

I am in agreement with Tearose that I would probably write to the administrator to describe the treatment you received and I would enclose perhaps the medical summary report from NIH or Dr. Grubb about your physical condition. I know this will require precious energy on your behalf but if you don't take some action, I fear that what they have put in your records could become a problem for you down the line. Also, I don't believe the doctors should be allowed to get away with this without anyone challenging them in writing. It would be great if your regular physician would add a written note about your condition as well.

I know you have been through so much and this latest disappointment must be terribly hard to deal with but do not let them win, Ernie. You have well respected doctors here in the US who have tested you thoroughly and know that it is not in your head. AND, you have all of us here to testify that you are NOT crazy!!

Rest well and get your strength back.

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Hi, Ernie. I don't think we've chatted before. I read your post and got sooooo mad for you! You handled yourself well in your situation, but how awful for you that you KNOW you have a physical illness and they won't listen. I had a technician at the Cleveland Clinic the other day, right before my TTT, tell me that doctors who stand by psychological problems with POTS patients are just taking a cop out because they don't know what's specifically wrong and they don't want to look inept. Have you contacted Dr. Grubb? Can you come to the Cleveland Clinic for tests? I wish there was something I could do or say to help you. Please know, I think we've all been there with you. Ten years ago, when I was admitted to the Cleveland Clinic for tests and my POTS was REALLY bad, I had a doctor tell me I was psychotic. It was awful. I've been sent to a psychiatrist once for counseling, then was evaluated in the hospital ER by another one. Neither could find anything mentally wrong with me. Now, I've finally begun to find doctors who believe in POTS and believe in me. Keep searching, Ernie. Know we're here to listen and to help as much as we can.

Linda

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Hi,

I don't know if I am in some kind of limbo today or if it's because I am mourning this experience faster than usual but I am not as depressed and desperate as I would usually be given the circumstances. 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 hope that I will not crash within the next few days.

Your support has certainly made a big difference. Posting about the experience and talking about it helps me to clean up this mess. Thanks for your input.

Yesterday before I left the hospital I went to the Archives to get a copy of my medical file. I should get it within the next month. I would be surprised to read what they wrote about me.

I think it is better that they wrote that I refused the psychiatric consultation even if they feel that I needed one than to lie about the interview. We are often put in a no-win situation and we have to try to get out of the situation with the less damage possible. I feel it's like playing check-mate.

I would like to go to the Cleveland Clinic or Mayo but my government won't pay for the visit. My PCP has already asked the government and the answer was that we have good doctors in Canada. So I am trying to find the lucky number!

I have an appointment with Dr Grubb in May but I don't know what to do about it. I will post on a different topic because I would like to get your opinion on the subject.

Love

Ernie

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Brava!

Sorry I am late to respond my internet was down too last night.

As I read your story, the anger I felt was surpassed by your amazing fortitude! It was like a spy movie were they capture our heroine and torture her for a week, then try mind control to break her down when her body is in a weakened state. But then, just like in the movies, our star fights back with every ounce of strength she can find and escapes unharmed.

Remember that last part sweetness -- you escaped unharmed. They can't hurt you. We won't let them.

Cheers to your resilience!

EM

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Ernie: Let me add my voice the chorus here. I was simply crestfallen when I read your note. Like others, I can somewhat relate to being 'brushed off' as an anxiety case. But, in fairness to some of the doctors who saw me early on, my symptoms did look an awful lot like anxiety and/or panic attacks. The trouble is - and I explained this to them time and again - I was NOT having panic attacks when I stood from my bed and my HR rose to 140! (Nor, as a marathon runner, was a DECONDITIONED - that's one suggestion no doctor had the audacity to make.) However, I have never in my life heard of someone having muscle weakness to the point of paralysis as a consequence of anxiety. It is simply beyond me that the doctors would suggest this in your case. Wouldn't it be far better for the them to be honest - and admit that they don't know what is happening to you.

Any chance you could get evaluated again at NIH? Dr. Goldstein I know is familiar with your brother's case and I think you once told me you were there yourself for testing???

Frankly, if I were you and I would have needed the psychiatrist - if only to help me cope with the arrogant, dismissive doctors!

Don't give up, Ernie! You know in your heart and your mind and your soul that something is physically wrong. Trust your instincts and keep fighting. And remember we're all here for you...

RunnerGirl

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Ernie,

I am very deep in a hole right now but had to respond to this.

I am so sorry you had to go through that. I can't tell you the number of times I went through many of the same things. I had conversion disorder according to one doctor, though I was 84 lbs and not eating and they had by then found the POTS and dysmotiltiy. And then later I was accused of Munchausen's. I so understnad your frustration and your sadness. But you know you are ill and even though it takes everything in you to keep fighting keep on. Never doubt yourself and hold on to your diagnosis's, Dr. Grubb and his knowledge and that he nows you are ill and our support. Many of have been there and know how you are feeling. We understand we send you strength but most of all we believe in you!

Take care and remember,

'I get up, I walk, I fall down. Meanwhile I keep dancing"

Sending you support hugs and anything else that will help

Stacey

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Ernie,

i am so very very sorry about how you were treated. that is just horrible!!!!!!!!

I can relate to what you are going through though, I wish there were something that I could do for you!

Best wishes to you!

Linda

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