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#1 Carloss

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Posted 04 September 2009 - 07:31 PM

Well, in regards to my situation with Dr. Fleming of UBC Sleep Disorders I guess it is best to just tell you how all this happened from the beginning as best I can remember it.

About, 4-5 years ago I stumbled on those two web sites about narcolepsy and realized instantly that I suffer from the symptoms of narcolepsy and that the symptoms of serious sleep disorder run through my family in the classic narcoleptic pattern. The web site produced by Harvard University about the symptoms of narcolepsy is a bit more thorough about the causes and effects and after having read that information as well I am completely convinced that I have absolutely nothing less than the symptoms of narcolepsy and that this definition of my life satisfactorily explains all the untoward circumstances of my life I now know to be identical to the symptoms of narcolepsy. Nothing more and certainly nothing less. So. armed with a head full of knowledge and logical inference I began to ask for help in my local community.

The very first thing I did was go the nearest drop in medical clinic, tell them that I think I have narcolepsy and ask "What should I do next?" And, this is how it all began.

Their answer was frankly either "I don't know" or, "You need to see a psychiatrist."

To which my usual response was "This is not a psychiatric problem. This is a neurological problem."

To which their honest and general response was simply and inexplicably, "No. You need to see a psychiatrist."

Now, that wasn't just once or twice. That was every single month, 12 times a year for four years in a row because by now I was also filling my prescription for paxil, nonetheless undiagnosed for cataplexy which I had the paxil prescribed for. Until I became so enraged that I actually went to the emergency room of a hospital in another city altogether, flagged down a very busy surgeon and pleaded with him. "If I think I have narcolepsy, who do I see?"

And, in an instant, without question he quickly, calmly and unhesitatingly replied, "A neurologist."

So, I headed back to Vancouver, four years later and asked to see a neurologist.

I got that appointment with a Dr. Hoagee. A man now retired. He agreed with me that on the basis of my symptoms he believes I may have narcolepsy. On that basis he prescribed modafinil - which I still take. And, then he made the necessary arrangements for me to see the UBC Sleep Disorders Clinic for a further evaluation. (Finally, four years later of asking every single month.)

So, excitedly I went to the UBC Sleep Disorders and immediately began to think and see that something is amiss here. Immediately Dr. Jonathon Fleming began to argue with me about my symptoms. He repeatedly denied that facial paralysis and an involuntary inability to speak whenever I am flustered, scared, startled or frightened is not cataplexy. Now, not only was this very insulting to my intelligence but given the 4 -FOUR years I had been asking for medical help it was also very personally frustrating and insulting because facial cataplexy and EDS has been the catalyst of the complete and utter devastation of my whole and entire life.

So, I concluded that Dr. Fleming is lying to me for some reason unknown at which point I then asked for a definitive Sleep Diagnostic Exam.

Now, get this... That exam is made up of possibly 4 or 5 separate sleep latency diagnostics, but, once a patient has scored a positive on only 4/5 diagnostics they are no longer required to take the fifth exam. And, guess what? That is exactly what happened to me. By the end of the fourth diagnostic I was allowed to leave because no further examination was required to conclude that I can have no other possible diagnosis but narcolepsy, and not any of the other possible candidates in sleep medicine. So, I was Diagnosed.

But, then the next week in Dr. Fleming's office he had the gall and the nerve to continue to deny, in the face of conclusive medical evidence that I have narcolepsy.

At which point I threatened to sue him and left his office.

To this day I have a received a letter from Dr. Fleming indicating that he will use his authority at the UBC Sleep Disorders Clinic to see to it that I am not ever able to see any other doctor in the UBC Sleep Disorders Clinic ever again. That is the one and only Sleep Disorders Clinic in British Columbia Canada which I am insured to see. So, I may not ever be able to receive a legal and proper diagnosis of my sleep disorder symptoms no matter what. I can not even go there for a glass of water, if I needed one. I have been absolutely and one hundred percent cut off from medical treatment for my symptoms and as thus I am not even able to successfully threaten suit for lack of another credible diagnosis here in Canada.

And, that is it. It is officially over for me and my hopes of ever leading a normal live.

And, that is where things stand between me and my doctor, Jonathon Fleming MD of UBC Sleep Disorders.

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Note: To add that I believe Dr. Fleming has been protecting the 30 or so odd doctors who I had been asking for help with my symptoms of narcolepsy from medical malpractice for their ignorance since the beginning is a not a moot point.

#2 sleepless sleeper

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Posted 04 September 2009 - 11:12 PM

I just deleted what I typed in response. I couldn't help but make a joke from something that you said earlier today.

Several people on here have bad doctor stories, but yours is the worst that I've heard so far. Feelings of nightmarish futility must be overwhelming at times. What can you do? If you have no dx, then you cannot say that they are withholding services? I guess?

I can't remember who the lady was, but on one of talkaboutsleep.com's Thursday evening chats, there was a woman that had legal answers for a person on a different issue. Maybe that is a place that you could go to, also. Mountain time, the chat starts at 7 or 7:30pm. I always get the time mixed up. It lasts for an hour or an hour and a half.