Said To Pretend To Be Healthy?????

[Ernie]

Hi everyone,

I have been going to one of the Montreal Children's Hospital for a year to get my son diagnosed with POTS. He was diagnosed in 2004 by Dr Goldstein from NIH. Then he was diagnosed in Canada from another researcher on June 22, 2011 and then in Sept 2011. The problem is that none of those researchers wrote the diagnoses down.

So finally we went to see Dr Stewart in NY who diagnosed him and wrote a report and treatment plan in October 2011.

So now I am trying to find a doctor in Montreal who will prescribe the medication that Dr Stewart has suggested. None of the 5 specialists we have seen want to do it because they don't know our disorder.

But the best statement I got was last Thursday when the specialist told my son that he was not sick, that his blood pooling in his legs was normal, that it was normal that his legs turn purple when he stands for 2-3 minutes and that I was putting bad ideas in his mind and that I should push him to have the life of a normal teenager.

There are 31 members of my family who are diagnosed presently, and it's the first time in 8 years that one of us has been told that it's a boggus diagnosis and that it is normal to have purple leg when we stand up.

He also has sleep apnea diagnosed by 2 sleep studies. The doctor told me to encourage my son to wear his CPAP. I told her that the Sleep Apnea was also imaginary. She said why is that so. I said: "One diagnosis is worth the other one." If my son is healty then he does not have any health issue and the sleep apnea is also a boggus diagnosis. You should have seen her face. She said: "No, no, they did the sleep study and it confimed the diagnosis." So I told her that it's not because she does not know a disorder that it does not exist.

Then she told me that she did not have any medication to prescribe him. I told her that I have my list which could work on him. She asked me if it really worked. I told her that without it I faint every time I stand. She said that my son did not need any meds as he is able to function. Ah really! He can't stand 3 minutes without fealing he is going to pass out and if he continues to stand he will faint. I doubt that this is normal!

So as we were leaving her, she asked me not to faint in her office! I told her that I would wait until I am outside the building so that the hospital would not be responsible for my body! (My goodness, I can't believe a doctor asked me not to faint in her office!)

My son was really upset and discouraged that she did not believe he had symptoms and that he is not worth having medication to help him function.

Thanks to reading my venting

[GingerA]

Oh wow! I am so sorry that happened to you. I have had many docs hint that I did not have symptoms but never one with the ignorance to out right say it to my face! As one mom to another let me congratulate you for not slapping the woman! I don't know if I would have had the restraint when it comes to my babies.

Tell your son not to give up because of ignorant people. There are some great doctors out there. They are just hard to find but totally worth it.

[HopeSprings]

I'm sorry for you and your son how terrible to be treated that way! Love your feisty responses though. You've seen 5 specialists and they all said NO? What do they specialize in!? Hoping there's another Dr. who will be open to Dr. Stewart's recommendations?

[Ernie]

We went to see a nephrologist, an endocrinologist, a cardiologist, 2 neurologists and the adolescence specialist who told us to push to pretend to be normal and everything will turn out fine.

[brethor9]

Ernie

I am so sorry that you have to continue dealing with ignorance from so many doctors regarding your son's illness ........Have you tried traveling outside of Montreal? The specialist I see is in Hamilton and he is very good....if not for him diagnosing me I would likely be in a padded cell and completely bedridden. I do believe the Hamilton clinic sees young patients as whenever I go for followups there are young people there for testing..... I also heard there is a specialist in Ottawa? that would be closer to you....

Bren

[ramakentesh]

I still cant believe in this day and age that there are doctors who have these attitudes.

[bellgirl]

So very sorry for your situation. You need to find a doctor, who will prescribe your son some medications. Could you go back to the doctor, who first diagnosed him? I have sleep apnea, too, and I feel so badly for you. I was literally dying without medication. I hope you can get some help!! Let us know. I believe there is a list of doctor's on this web site in different areas.

[Ernie]

I will pretend that I am rich, intelligent, young, beautiful and most importantly very healthy. I am going to the next Olympics as a gymnast and a weight lifter!!!

I will win the Gold Medal in both fields.

[Clairefmartin]

You have 31 people in your family with POTS? Or did I read that wrong?

I'm very sorry about the ignorant stupid doctor, I hope you keep pushing and find someone with their head connected to the right end. Do you have POTS as well? That makes it even harder to keep pushing. Good luck and I hope you get some treatment, that is terrible.

[we_don't_look_sick]

PLEASE Print out our responses and paste them on a website or Rate this Doctor site! lol I love that you told the Dr. the sleep apnea was bogus as well. WOW a Dr who picks and chooses health issues as real or not! I can't believe they still make it thru medical school!

43 years ago, my mom was told she was having 'empty nest syndrome' and saying I was sick because I was her baby. Mom had 7 children, by the time I was 5 she was babysitting/raising grandchildren. Her nest was never empty!!

She told the idiot who said it was empty nest syndrome; it is NOT my imagination when I pick her up from the floor in a dead faint on put her on the bed or couch. The response was "well...okay..."

It took 40 years for me to get a diagnosis. And I am in the captiol city of Arkansas and do not have a Dr who specializes in dysautonomia. Write to the Dr's your son has seen and they diagnosed him. Maybe they will mail prescriptions?

Finishing medical school does not eliminate sheer stupidity. If you have a medical board or the clinic where that Dr works is under a medical board, I hope they are reported.

Send a 'imaginary' payment for the visit.

[RichGotsPots]

They are Familial Dyautonomia group but some of the doctors who treat this disorder also treat regular Dysautonomia, try to call and see if they have a doctor list..

Montreal Chapter of Dysautonomia

3551 St-Charles Blvd., Suite 155

Kirkland, Quebec

H9H 3C4

[RichGotsPots]

Dr. Ronald Schondorf

Neurology

SMBD Jewish General Hospital

3755 chemin de la Cote Ste Catherine

Montreal, QC H3T 1E2

Dr. Maxime Lamarre Cliche

Institut de Recherches Cliniques de Montreal

110, Avenue des Pins Quest

Montreal (Quebec) Canada H2W 1R7

Autonomic Laboratory

POTS, NCS, PAF/Secondary Autonomic Failure, MSAJean Cusson, M.D., Ph.D., FRCPC

Internal Medicine Division,

CHUM (Centre hospitalier de l'Université de Montréal)

CHUM (Hôtel-Dieu)

3840 St-Urbain

Montréal, Qc, H2W 1T8, Canada

Phone: 514-843-2723

Fax: 514-843-2741

E-Mail: jean.cusson@umontreal.ca

Multiple System Atrophy (Shy-Drager Syndrome)

Orthostatic Intolerance (POTS, mitral valve prolapse)

Other autonomic disordersJohn D. Stewart, M.B.B.S., F.R.C.P.©

Montreal Neurological Hospital

3801 University Street, Room 365

Montreal, Quebec

CANADA H3A 2B4

Phone: 514-398-8980

Fax: 514-398-1285

E-mail: john.stewart@muhc.mcgill.ca john.stewart@muhc.mcgill.ca]

Multiple System Atrophy

Pure Autonomic Failure

Diabetic Autonomic Failure

Orthostatic Hypotension]

[we_don't_look_sick]

"push to Pretend to be Normal and everything will be fine"

Pushing myself becuase I didn't know better has taught me many things; most of which involve things like:

fainting and sliding down a sheetrock wall will give you a painful wall burn;

fainting in the bathroom causes bruises in places on all sides of your body and hurt for a long time;

fainting and hitting wood for the wood stove hurts very bad and causes cuts and bruises

RUNNING behind other kids on a sidewalk & pretending to be normal will result in huge concrete burn/scrape and you feel anything but normal when you come to

I have been told to pretend I don't have a pacemaker and move on with my life! Seriously?? How about the $22,000 back from the surgery and you forget about the bill?

I would like to learn the Vulcan pinch Spoc uses to show people how it is impossible to feel normal when you wake up on the floor -

Move on with the Dr search, this one is definetly a loser.

[Ernie]

Yes, there are 31 members in my family who have been diagnosted because they were tested positive for POTS and some have NCS also. There are minimally 80 of us with the disorder but since I am the one coordinating the care of everyone, I don't have time to take in all the members. I have had to refuse some because of time constraint. I asked a few members to help me in my job but nobody is interested. It's a lot of work. I wonder if someone will be there to replace me when I won't be able to fulfill that "job" anymore.

[Elfie]

I really feel for you. Although I haven't had doctors accuse me of not having POTS or having a "made up" condition, they have latched on to one or two symptoms and if those symptoms aren't present or under control, then the dysautonomia must not be affecting me, be serious, ect.

I have had a very hard time getting treatment for any symptoms beside hr/fainting, and it took me several years after diagnosis to get those treated seriously.

I have issues getting treatment because I went untreated for so many years (developed good coping skills, but that doesn't mean I don't suffer) and have always been a very high functioning person and because dysautonomia can be so variable and manifest itself in such strange ways. I've found ways to "be able to function" because the other choice was end up in a psych ward-- that doesn't mean that I have any quality of life.

Your kid is very lucky to have an advocate in you.

[potsyturvy]

I'm with WeDon'tLookSick, send an imaginary payment! lol. I can't stand doctors like that. I had one that told me that me, my whole family, and all my friends need to go into therapy because I am perfectly healthy and they are just enabling me. He said that before he even did any tests. I wish he had moved his head a little closer to me during the reflex test so my hyperreflexia would have kicked him in the head, as it was, I barely missed If I'd got him, I would have said "and that pain in your head is imaginary too"

[issie]

So sorry, for sure write up a bad doctor review. I had this happen to me and not only did I write bad reviews where ever I could - I went as far to the top of the medical center complaining about the way the doctor mis-handled me and had reports noted in my medical file of disagreement with her. Come to find out- I wasn't the only one she's done that way. She has developed quite the reputation. Not a good POTS doc at all - thinks it's all in our heads and doesn't even look at the evidence that her colleagues puts forward. Even went so far as to write in her paper to not do any further testing for those that she fit into this catagory. She had an agenda to put us all into a nice little box for a psychiatrist to label and to try to further her career with a paper that she wrote on her ideas. I saw her psychiatrist and she said that she was going to have a talk with her and she shouldn't have said and done what she did and that wasn't my problem at all. So, at least I had someone in my corner. And thousands of dollars later a firm DX of dysautonomia the HyperPOTS variety with EDS and probable MCAD and autoimmune dysfunction.

[anna]

Hi Ernie, have you looked at:

Disease characteristics. Dopamine beta-hydroxylase (DBH) deficiency is characterized by normal parasympathetic and sympathetic cholinergic function and lack of sympathetic noradrenergic function. Affected individuals exhibit profound deficits in autonomic regulation of cardiovascular function that predispose to orthostatic hypotension. Although DBH deficiency appears to be present from birth, the diagnosis is not generally recognized until late childhood. The combination of ptosis of the eyelids in infants and children, together with hypotension, is suggestive of the disease. In the perinatal period, DBH deficiency has been complicated by vomiting, dehydration, hypotension, hypothermia, and profound hypoglycemia requiring repeated hospitalization; children have reduced exercise capacity. By early adulthood, individuals have profound orthostatic hypotension, greatly reduced exercise tolerance, ptosis of the eyelids, and nasal stuffiness. Presyncopal symptoms include dizziness, blurred vision, dyspnea, nuchal discomfort, and chest pain. Life expectancy is unknown.

http://www.ncbi.nlm.nih.gov/books/NBK1474/

I am sure with such a good size family group some Dr. out their would be very very happy indeed to do some gene sampling on you, modern tech has made gene testing a more viable, in the UK their are a few Dr.'s I am sure that would love your family to run some ideas by.

Maybe you need to market your family!! If you find a faulty gene amongst you all most Dr.'s would have a very hard time denying your poor son medical care.

[Sarah4444]

Ernie, I'm so sorry this happened. My POTS doctor is Dr. Carlos Morillo in Hamilton, ON. Not exactly close, but he is very good. He has referred me to a geneticist he works with at this also seems to have a genetic component for me.

[Ernie]

Thank you all my dear friends for your advice and support.

I went to see my own general practicionner and he accepted to prescribe my son Midodrine and Nadolol. So we are going to start with that.

I am shocked to read that so many of you were(are) mistreated also. My heart goes to all of you. I wonder how many years it will take before we are officially recognized. At one point epileptic were believed to be possessed by the demon. Nowadays doctors know that it's an electrical imbalance in the brain. One day it will be our turn to be recognized.

[Trach]

For patients who go after you - may it never happen again.

In Quebec, you can request an investigation into the professional conduct of your physician by completing and sending a investigation request form to the Direction des enquêtes du Collège des médecins du Québec:

Direction des enquêtes

Collège des médecins du Québec

2170, boulevard René Levesque Ouest

Montréal (Québec) H3H 2T8

Fax: 514-933-2291

Tel: 514-933-4441 Toll free (from outside Montreal): 1-888-MÉDECIN

For more detailed information on complaints procedures click here. (site below).

http://www.cmq.org/en/public/profil/commun/AProposOrdre/ProcessusDisciplinaire/Enquetes/PorterPlainte.aspx

[cupcakemomma5]

@Bren, are you sure there is a doctor that specializes in POTS? If so where????

I am so sorry about the way the children's hospital treated you. That is completely unprofessional!

I would really looking up the three other docs in mtl.

@jewish gen: dr.schondorf

@at hotel dieu ( right next to royal vic) Maximme lammare cliche

@ Charles lemoyene dr.Jean cousson

I hope this helps. I an Ottawa being transferred to MTL. Kinda worried.

[Hopsmom]

I am a RN and I've had this for seven years. I've been to Vanderbilt and I've devoured every bit of literature I can find on the subject. Had to go to the ER this weekend and the first nurse I saw still said " honey u r fine. U r having anxiety". Ummmmmm. No I'm not. Grrrrrrr

[brethor9]

Hi Cupcake My POTS/Autonomic specialist is Dr. Juan Guzman at Hamilton General Hospital....he works along side the director of the Autonomic Centre, Dr. Carlos Morillio who also sees patients I believe. I have had nothing but a positive experience with Dr. Guzman and I am a very complicated case I highly recommend him he is an absolute blessing to me.....very kind and never rushes during my appointments...answers all my questions....and if he doesn't know is not afraid to refer to someone else

[Canadiangirl73]

Hi Cupcake, I'm in Ottawa too! I saw Dr. Morillo in July and was supposed to go back in November but got pneumonia so am now scheduled for early March. I will also be going to Mtl. You can send me a personal message if you want to talk more. I had been told by doctors that there were others in our city with this, but kinda nice to hear another Ottawan's experience. As far as being told to pretend to be healthy, that sure happened to me. I saw an internal med doc who told me:`'Call this POTS, call this my-heart-races-when-I-stand-up, call it whatever you want, but get on with your life! Your level of debilitation is out of proportion.' UGH