Still Same Old

[Ernie]

Hi everyone,

I just went with my son to see the number 1 Canadian Syncope Neurologist. My son has already been diagnosed with POTS and NCS on June 22nd and the other specialist did not write the diagnosis down yet so we need the diagnosis written down to help with school, etc..

Can you imagine that the Dr asked my son to sit, took his BP and HR and then asked him to stand for 3 minutes took his BP and HR and said that he did not have POTS. I was in shock. You are suppose to lie down for 10 minutes take the vitals and then stand up, take the vitals wait 2-3 minutes take the vitals until 10 minutes.

Some of you might remember that he is the one who diagnosed me with Munchaussen 10 years ago. I thought that after 10 years he would be more competent as more literature has been published but he is the same old ***. He has no social skills at all. I wanted to show him the TTT and he said to give it to the secretary and he would take a look at it later on. I said no. If he does not have the time to look at it now, we are not important enough as his patients to come back to him. The secretary said that I could not refuse. I told her that I just said "no" and that was my final word. We just left and she was dumbfounded.

I did not want him to say that the TTT was negative because he is so incompetent. I prefer to go and see someone who I trust better.

I left the hospital so upset and angry of having lost my time. He said that he will write the refering doctor that he does not have POTS. (Has soon as my son stands his HR goes from 60 to 120 and it stays in the 120 or increase for the whole 10 minutes :wacko: .)

[brethor9]

I am so sorry Ernie!!! You just shouldnt have to put up with that kind of attitude along with everything else!! Its so insulting! I live in Ontario, Canada. I have had a horrible time finding Dr's to take this diagnosis and symptoms seriously and if they havent heard of it they wont even give you the time of day!! I was seeing a neuro too who turned out to be a complete idiot so I stopped seeing her and moved on until I got the answers I wanted. Luckily, I have had great luck dealing with an auto specialist at Hamilton Hospital. Not sure where you live in Canada but if you are in Ontario or close by maybe you could go there for help.

Take good care and my blessings go out to you and yours and hope you can find some positive outcome!

Bren

[HopeSprings]

"He said that he will write the refering doctor that he does not have POTS."

OK, I'm horrified. I would insist that he not write ANYTHING to anyone! If I were you, I'd request they destroy your son's chart, pretend this visit never happened, and start fresh with someone else. What a waste of time. Munchhausen is an insult - I wouldn't have been able to give him a second chance.

[lieze]

I'm sorry.

The doctor I have seen for the last 2 years seems very sharp and with it and I'll never forget the day because I had a normal bp and pulse and could sit and talk to her said okay your POTS has stabilized.

I wonder what that really means.

She doesn't see how incapacitated I really am and how I cannot do normal things at all.

It is very frustrating I understand that.

[sue1234]

That is down right awful! Even though your doctor actually said he believes you had Munchhausen, I bet there are more doctors thinking that's what some of us have. I have always thought the doctors are sometimes the hardest part of having POTS....I hope your son gets better help.

[Ernie]

Hi,

Thanks for your prompt support.

He is seeing an internal medicine doctor on Monday and he will have another TTT. That one diagnosed me with psychosomatic syncope 10 years ago so I hope that my son will get a better diagnosis.

I will call tomorrow Dr S's secretary and ask her to tell Dr S to forget about sending the refering doctor his opinion. He has such a big ego that I am sure he will send it anyway. I will give it a try. Who knows.

[Ernie]

Hi Bren,

I live in Montreal.

I have seen Dr Morillo in Hamilton which is an excellent doctor. I might end up there with my son. I have a referral for him but I am waiting after the TTT on Monday to take an appointment with Dr Morillo because it is a 10 hours drive one way for us and we have to sleep over. Plus we have to go at least 3 time because he does not schedule the TTT the first visit and does not give the result the day you do the TTT. I am determined to get his diagnosis one way or another.

[brethor9]

Hi Ernie

I love Montreal.....It's a beautiful city!

I actually see a new Dr at Hamilton Hospital that is working along side Dr Morillo. His name is Dr. Guzzman and he is very kind, understanding and thorough. They were actually quite accomodating for my appointments as I live almost 4 hrs away so I can sympathize with the long drive. On my first vist they did actually do the TTT and told me the results right after the test and I was started on meds the same day. My 2nd visit they did the catecholamine tests and prescribed more meds. Maybe with the addition of a new Dr they are able to schedule more appropriately for out of town patients. I would call them and explain your situation and see what they are able to do for you if you dont get anywhere on Monday.

Good luck Ernie! I really hope you and your son can get some answers and start getting on top of his illness. Its bad enough when we have to suffer this illness but my heart really goes out to the kids like your son!

Bren

[Sallysblooms]

I hope you find another doctor. I would find another fast.

[shoegal]

shocked you went back to him! did he report you to anyone or just say that? that is awful :o

[comet555]

For those of you going to Hamilton for treatment did you need to get a referral from your doctor, or can you just call and appointment yourself? Also, how long did you have to wait for an appointment?

I only ask because I'm in limbo at the moment waiting for the cardiologist to send the letter he promised to my family doctor. Until then I have no idea what they are going to do with me. So while I'm waiting is still waiting to be typed up by the doctors secretary (after two months!). I went in to collect it myself and she said she was away lots this summer and had lots of catching up to do. So I'm am pretty ticked off that I have to wait for treatment because of this letter. If I was able to book my own appointment I could speed things up a bit.

Would just really like to get onto the next phase!

[brethor9]

Hi Comet

Unfortunately you have to be referred to see Dr. Morillo in Hamilton. I think I waited between 3-4mnths to get in to see them initially. I don't blame you it is hard just waiting and waiting. Keep on your Dr's office!!

Bren

[Ernie]

Hi Shoegal,

He sent a report to my Primary doctor writing black on white that I had Munchaussen and Hysterical Syncope. Since all the specialists in Montreal look up to him and call him for advice I was put on black list and no doctor would take me as a patient. You know when you are diagnosed with Munchaussen it means that you poison yourself or hurt yourself on purpuse to get attention. That's why I could not have any doctor in Montreal. I had to go to the U.S. to get my diagnosis - I saw Dr Grubb and then Dr Goldstein.

[icesktr189]

Im sorry you have to deal with complete idiots.

I often wonder why some people choose the profession as a doctor, when its very obvious that they dont have any interest in it. I have actually walked out of two appointments before because of the condesening tone and complete denial that I even had POTS in the first place.

Even with my diagnosis, I have seen doctors that flat out refuse to believe in such a thing because they have never heard of it.

[potsgirl]

I just want to remind posters that the use of symbols for swear words is not acceptable on the forum, especially if anyone uses a name of a doctor negatively. Please try to keep replies positive and supportive.

Thanks!

Jana

[Mary P]

Ernie, I saw the same doctor in Montreal as you did and he treated my son and me with as much disregard and disrespect as he did you and your son. I wrote to the head of the ethics dept about how poorly we were treated but of course this doctor denied everything.

He told me that I had no problem except that I was totally out of shape and needed to go home and exercise. That was in 2008. Since then I've been diagnosed with a number of conditions, most recently small fibre neuropathy and neuromuscular disease. This was proof that everything I've been experiencing is real, that I'm not just 'totally out of shape'.

Keep trying. There'll be someone who'll give you and your son the respect and help you deserve. The people at the Hamilton Hospital sound like the kind of caring and competent doctors you may eventually need. All the best to you and your son!

Mary P

[Ernie]

Hi Shoegal,

I forgot to say that I went back to Dr S with my son after 10 years of not seeing him because my son is 14 years old. We have gone to all the pediatricians in Montreal and none of them know POTS and NCS and even though I have brought them research on POTS and NCS none of them want to diagnose him and treat him. It has been a year of going to doctors almost every week now. So the specialists said to go to Dr S. I accepted because it is kind of my last choice in Montreal. My treating doctors don't accept minors.

I just pretented that I had never seen him so that I would be nice with him.

[Ernie]

Hi Bren,

It's nice to know that Dr Morillo will do the TTT, the interpretation and prescribe some medication on the same trip now. I might go with my son knowing that. He is a bit like the Canadian version of Dr Grubb. I'll know by the end of the week what I will do next. I called in July and I left a message on their answering machine to get an appointment but they never returned the call. It might have been lost somewhere so I'll have to call back. I might need another referal for myself because it has been more than 5 years that I have seen him.

[Ernie]

Hi Dani,

Some of doctors to help people, others are there for the money and others for their ego.