Misdiagnosed 

by Nadia Salem

When I was born, I was treated like a normal healthy baby. There was no reason to think that 39 years later I'd be saying that the assumption I was normal was wrong. 

The first signs this was false was the first time a PE teacher said to have me checked for asthma. Every doctor I saw for it said "no wheezing no asthma." It never occurred to them that I was not running in there office and so my symptoms were not showing like they did when I was running in PE. It's still not clear whats causing this even now. My current theory is I have exercise induced asthma, and the proof something is wrong was the pulmonary function tests showing marked improvement when I used Albuterol. Those tests weren't done until I was in my early 20s. Much too late to undo the damage not playing in PE did to my social skills with my classmates.

Next was my headaches. According to my parents (who are professional high school teachers) they thought it was caused by bad grades and having trouble with learning in school. (I was diagnosed whether correct or not (still in question) with learning disabilities so the grades went hand in hand with that problem mainly because special ed didn't teach you how to learn in a normal classroom in those days.) Though the headaches were never diagnosed and eventually went away, I have new theories about them from my current diagnoses that I will discuss later in this blog.

 Than my "not the appendix" that was the appendix. My symptoms the day before my thirteenth birthday when I didn't want to tell mom I had a stomach ache because I was going to Disneyland the next day with a friend. The first time I saw a doctor he said constipation and didn't bother asking if I can go to the restroom. That started the long long line of misdiagnoses of anything from growing pains to ovarian cysts. The only thing constant with the misdiagnosis is after taking my temp they said not the appendix. Guess what? It was the appendix. When it was finally removed in 99 it was 12 inches long and badly scarred which surprised everyone including the surgeon who thought he was going to find something else but didn't know what when he went in. It ends up it was chronic appendicitis. I theorize the size was one of the reasons it was misdiagnosed as well because it wasn't in one specific spot at the appendix it was in a circle area that I had the pain. But main reason was no fever. 

When I hit fourteen, along with becoming overweight (that had nothing to do with the food I ate because I ate less healthy the three months before I gained weight the the three months I started gaining), becoming triple j in bra size(which happened naturally; it's one of the reasons I will never understand why anyone would want enlargement surgery), and starting puberty, I started having what I thought were dizzy spells. Until 2015 (2 years ago) I still couldn't get a working treatment for it. Main problem was the diagnosis. I was diagnosed with vertigo closer to recently(somewhere around 2010 to 2011 it started becoming misdiagnosed as benign vertigo syndrome (which I like to call fictional vertigo syndrome because it's just another misdiagnosis in my case and another way of saying vertigo).  Some reasons I believe the doctors were so wrong to keep diagnosing me with it starts with the fact that they never followed up on it. They never sent me to an ENT doctor to check to see if my ears were the problem. They ignored my complaints that the meds they kept giving me were not working (which were motion sickness pills). But the biggest cause of misdiagnosis was the neuro exam. (I didn't find out the name of it until 2012 but I had it more than a hundred times and if you asked me before I knew the name what doctors did when I came about dizzy spells every answer would be the standard neuro exam.) Before you think the neuro exam is an MRI and has probes or whatever it doesn't. Or at least the ones I went through repeatedly didn't. No my neuro exams consisted of pushing down on there hands, following fingers with your eye (never really understood that test), pushing up and down with my legs etc. I even had one doctors ask me to move my eyebrows up (not as easy as it sounds). I've had lots of variations of this all done within five minutes usually and all results had the doctor say vertigo (before 2012). Until 2012 I didn't realize what was missing from every neuro exam I been through: standing and walking. As crazy as it sounds they didn't got me off the examining table during a neuro exam. If you think they watched me before I noticed, no that doesn't work. If that was true they weren't doing a reliable version because walk is wide gait and the only way to know that for sure is to ask me to narrow my feet when walking. The wideness keeps me from falling over. I guess my body adapted to my balance problems by doing that, and since I am overweight it didn't look unusual. Now you might wonder what standing has to do with the neuro exam, well it's a specific stance that throws the red flags. It's standing with your eyes closed and feet together. If you can stand still doing this, great. If not, red flag. Causes very. In fact it is one of the tests to tell if your sober (I'll discuss failing field sobriety tests cold stone sober on another post don't worry I was never tested by a cop). This test is called the romberg test. In fact it costs zero and takes five seconds if you fail and maybe a minute if you pass. In fact you can do it at home. Try doing it next time your drunk. Make sure someone is there to catch you though. I actually fail it with my eyes open which leaves a bigger problem. Most eyes closed are caused by medications or other factors that can be treated. Eyes open are by definition caused by the central nervous system. This is what the ent (who specialize in balance disorders) doctors at the NIH (national institutes of Health) ended up telling me either in 2012 or 2013 can't remember which year Dr. Cantor sent me to them. So you might say wait you said you knew two years ago what was wrong and it is 2017 this year and 2012 was five years ago. 2012 explained that it never ever ever was vertigo but didn't have an explanation otherwise. I was tested twice before the diagnosis of seizures or seizure tendency was made. What was the difference between the tests you might ask? How it was done is the answer. The first time the doctor did a sleep EEG where none of my triggers were done. I didn't realize to get a correct diagnosis of seizures or not having seizures requires actually having spells during the test. So when I didn't even have a spell I thought it was definitely not seizures long before I saw the doc for the results. This happened in 2011. Second time was in 2015 where my new neurologist sent me for a twenty-four hour EEG and my physical therapist and I made sure I had every trigger I normally have which was not easy and the EEG showed both 2 seizures and seizure tendency. I was treated first with the most common meds which actually started working and I was extremely disappointed when I started showing signs of rash and had to be taken off it completely. Next came Aptiom which I miss badly. It worked perfectly and had no reactions but it has no generic so the insurance wouldn't pay for it. They put me on their lower level versions that have generics but two things happened main problems is it wasn't working fully in fact I had a fall and fractured my ankle on one of them (fall and sprained ankle is most common since fourteen but fractured not so much). Whether the fracture was caused by the meds or my age doesn't matter the fact that I fell means it was not working. Second problem came when I got a unbareable rash and itch all over my body. It stopped happening after I was taken off. Problem was my neurologist didn't want to fight the insurance to put me back on the Aptiom and took me off all my meds and sent me to a epilectologist that took 2 months to see meanwhile I was back to falling and not able to walk without a problem. 

To find out the real diagnosis that connects the dots read my next post which I will be posting sometime next week