So frustrated.

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New Member

Date Joined Jul 2011
Total Posts : 1
   Posted 7/20/2011 6:01 PM (GMT -6)   
Okay, long story short. I am 23, and was diagnosed with SLE 6 years ago. My diagnosis was confirmed by several docs, including the Mayo Clinic. For two months I have been having fainting episodes where I go completely unconscious. It has become worse, I had 8 episodes in one week. It happened a few weeks ago while driving and I drove off the road into a ditch, luckily no one was hurt...but obviously I can no longer drive. I have had to take time off work because my job is strenuous and every time I do anything that exerts physical energy I nearly faint again. I also have been losing weight unexplained...In one month I went from 128 lbs to 117 (which I'm not really complaining, but I know it's not normal). I have become extremely weak and increasingly pale. After fainting on Friday and being discovered on the floor with diaphoresis (cold sweat) by my first cousin who is a nurse, she rushed me to the hospital. I was admitted and have spent the past 5 days in the hospital, was released yesterday. No real answers to why I have been passing out more...I was diagnosed with neurocardiogenic syncope after fainting during two tilt table tests a few years ago. The episodes were not frequent until 2 months ago, and now they have left me non-functional. I feel very nauseous, start sweating and feel "hot flashes", then have a strange feeling come over my body and finally faint. I wake up from the episodes drenched in sweat and feeling awful. In May after it happened I felt numb in various places, which worried my mom. She took me to the Emergency Room where they didn't even check my O2 Saturation and I had to ask to have my BP taken...all they did was a chest x-ray and write me a script for nausea for a med I already took for nausea. Then a few weeks ago I was driving to work and I fainted while driving and drove into a ditch. Finally, last Friday it happened again....I began feeling nauseous so I ran to the bathroom, and after dry heaving for a minute or two, passed out on the bathroom floor. My cousin was with me when this happened (she is a nurse) and had had enough of this, so she and my mother took me to the ER again. This time I was admitted to the hospital. They did find low blood counts- low white blood count and hemoglobin...I saw a hematologist in the hospital and he started me on iron pills and said we would watch all my other levels. I was kept on telemetry for the 5 days I was in the hospital, and was a cardiologist came in to consult with me. He came in the room and 20 seconds after meeting me decided that I don't really have lupus. He asked my symptoms of lupus, and I told him extreme pain, fatigue, sun sensitivity, rash across my face, chest pain, nausea.... at which point he interrupted and said "nausea is not a symptom of lupus. I'm not sure that you even have lupus." He was very rude and condescending....I really did not know what to think. So the next day, the heart monitor showed that I went into V-tach, so the nurses had to call him to come back. I begged them not to, and they tried to find another cardiologist to come see me but for whatever reason he showed up again, then proceeded to yell at me for "making him" speed on the highway to get there, because by the time he got there my heart rhythm was fine. So after this I told the charge nurse I absolutely do not want him to come back. But low and behold, he came in yet the next day. This time he was more rude than before, I think because my mom and fiance weren't there this time to defend me. He told me that my problem must be that I am just depressed, and basically it's all in my head. He then walked out, and as soon as he closed the door, I began crying. I was just completely in shock that he had been so condescending. I was finally discharged from the hospital last night and am going to another cardiologist tomorrow as an outpatient to just make sure it is not a cardiac issue causing me to pass out so often. AHHHH!!! I am so over this.

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 7/20/2011 7:32 PM (GMT -6)   
Sorry you had to met one of those doctors with the superiority complex. A heart doctor should never yell at his patient. I'd talk to the Administrator of the hospital and tell them how you were treated.
It sounds like your neurocardiogenic syncope is getting worse.

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 7/20/2011 8:06 PM (GMT -6)   
A cardiologist knows next-to-nothing about diagnosing Lupus -- so ignore him saying that. You need to find one by referral or reputation, I doubt the best ones are on staff at a local hospital.

And no doctor should be yelling at a patient, or even talking forcefully enough to make you feel that way. Besides, I bet you didn't decide to call him, the nurses did. Drop this guy like a hot potato, but do find another to check you out.

You need to press on with Drs until you find the source of the problem and get it remedied. If not a cardiologist, go back to a rheumy.

Best wishes.
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Veteran Member

Date Joined Feb 2009
Total Posts : 1916
   Posted 7/21/2011 12:48 PM (GMT -6)   
OMG, that is awful how that doctor treated you. I agree with couchtater. Report that doc and get to another doctor/and or hospital. you must feel horrible right now and afraid to leave your house. It's a shame you've been in the hospital twice and they don't know what is wrong, a crying shame. Get some new docs. I hope you will feel better very soon!!!!!
d 1/09 with colitis sigmoid colon with some diverticular disease as well, Colon resection Nov. 2010, now in remission
inflammator arthritis, type 2 d, asthma, skin scleroderma, VSL#3 probiotic, Vit. D, nexium, synthroid, plaquenil, cozar for high BP gave me bad joint pain,
Blood test positive for Crohn's via prometheus ibd serology panel ASCA. Positive ANA speckled pattern 1:180, high sed ra
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