How many of you were mis-diagnosed?
Posted 19 February 2008 - 11:09 PM
The hard thing now is, when I have (as I like to call them) a narco-attack, people would understand when I thought I was bipolar and just sedated/crazy.... but now when I explain I have N, they think I am making it up and am just lazy. URG! Let me say, though, being misunderstood is far better than mis-diagnosed! I almost feel like the diagnosis of N saved my life... or at least gave me one.
Posted 21 February 2008 - 10:03 PM
My experience is so very close to yours, my friend! Congrats on YOUR diagnosis! I want to dance a happy dance when I hear about others who survived the bi-polar noose!
Seriously, man...Welcome to life...I know EXACTLY what your going through, and it all gets sooo much better!
Please know you are not alone...The folks on this board are the best.
When my sister found out that I was narcoleptic (and not bi-polar) she said, "Oh great, now I have to get a book about something else to understand you". Geeze...thanks, Sis.
You'll ALWAYS have doubters...They can go take a flying leap. As long as you are taking care of your health, your doing the right thing!
Always here for ya, man....
Posted 06 March 2008 - 09:29 AM
ayway, what happened was, my daughter Mel, went to a girl scout sleepover at the zoo. a few days after that she was so sleepy all the time. she would come home from school for lunch and collapse on the couch. I would spend her whole lunch hour trying to wake her up, shove food down her and get her back to school. then she would come home at the end of the day and sleep for 2 or more hours. I kept calling her teacher to see if she was falling asleep in school - NO. this went on for a few days and then I took her to the doctor. they tested her for mono and of course the test was neg. this went on for another week and we were back at the doc being told she probably just had some virus that needed to get out of her system. unfortunately during this time Mel's peditrician was on a leave of absence so we were seeing all different back up doctors and each time we saw one, we had to tell our story all over. after about 3 1/2 weeks she started "slipping on the ice". over a few days she fell walking to my car after school but I really didn't think much of it because it was still winter. then she told me she fell in the bathroom at school ("slipped on water") and bumped her head. now I was beginning to wonder if this had to do with her sleepiness. one day we were walking into her dance class and she fell forward in slow motion and didn't even put her hands out to brace herself, she hit her head but not hard. she said she "slipped on the ice" - guess what? no ice was on the ground. I immediately took her to her peditrician's office and her regular doctor just happened to be there doing paperwork before returning back to work. I told her Mel's story and she said let"s try the bloodwork again because maybe something might show up since it had been a few weeks. as Mel was walking back from the lab with her dad she fell. I was so glad the doctor saw it. she immediately sent us to the hospital for a CTscan -neg. they admitted her to the hospital for observation until they could do the MRI the next day. that came back neg also. we met the ped neurologist and he had Mel do some gross motor skill evaluations. he had her sit on the floor and try to stand up without using her hands - after about 15 minutes she did it all the while looking like she was drunk. he had her run down the hallway, which she did - sideways, looking like she was drunk. he kept telling me "look she's doing a great job" I told him she's a dancer which takes skill and coordination, neither of which she was showing during these tests. she looked like someone else's child, not mine. by now she ws sleeping anytime she wasn't doing some kind of crazy test. after she would wake up she would be okay for a short time then her speech would start slurring and her head would bobble around as she was talking and her eyes would roll in her head. everytime this doctor would come into the room to talk to her, he would wake her up and she would not show any symptoms, until maybe half hour after being woken and by then he had already left the room. she then had a sleep deprived EEG checking for seizure disorder - neg. by now I was ready to climb the walls. she had been given tons of blood tests (blowing out 3 of her veins) checking for allergies, toxicology, viruses and all were neg. finally the neurologist had us talk to a psychologist. he split my daughter and I up to be questions by her. after many,many questions (not actually realizing they were checking to see if there may be abuse going on in our home), the doctor, who had never laid eyes on my daughter before our hospital stay, told me that my 8 year old had conversion disorder (pretty much boils down to she was doing this for attention and we needed to attend counseling). I about killed that doctor with my bear hands. I yelled and screamed at him - how dare he tell me that me child, who has never thrown a temper tantrum, was falling down stairs, slurring her words and sleeping constantly just for attention? I told him I wanted her discharged immediately. I called her peditrician from the hospital and told her what happened. she said to call tomorrow and come in during office hours and that she would call some of her collegues to see where to go from here.
late that night after we got home, I did the most horrible thing I could have possibly done at the time. I went on the internet and started searching her symptoms. by morning I had her diagnosed with myaesthenia gravis (a progressively debilitating disease, that she would eventually die from - she did have a lot of the symptoms). the next morning I called her doctor and guess what - she had been looking up the same thing. thankfully she made an appointment with one of the best pediatric neurologists in our area. we went the next day and rehashed our whole ordeal. after listening he said "I have a diagnosis, but I have one question I want to ask - does she ever fall down while having a great emotion like anger or happiness or while laughing?" I had told him the day before Mel's uncle had sent her a beautiful vase of tulips and when I brought them in the door, she was standing in the livingroom, she got so excited that she fell to the floor. he said that's what I thought. I then said "you don't think she has narcolepsy" (I only knew about N because I had this great psych prof in college who told us a story about a guy he worked with before he became a psychologist-people at work used to tell this guy jokes just to make him fall, they though it was hysterical and I guess that story never left me!) and he said "definitely" but we need to do the sleep tests to confirm. which we did and guess what? she has narcolepsy. she is on medication and is leading a life as close to normal as she can, which is quite phenomenol. she still dances, she plays volleyball, basketball and rugby. with her, if she doesn't stay active, she would probably sleep all the time. she still has to take naps during the day. she usually doesn't stay awake in the car. but other than that she leads a pretty normal life.
sorry our story was so long but it just shows how ignorant even professionals can be and with persistence you can find out what you need. I truly believe if I had not been an advocate for my daughter and not followed what I knew I my heart - that she was not acting out. we may still be in counseling sessions (which we never showed up for!) and she would still be falling down the steps.
Posted 07 March 2008 - 08:51 PM