More misdiagnosis and the answer

When I was fourteen, I also started having vomiting problems. Mainly because of fear it was going to be treated like bulimia, I didn't start seeing the doctors about it until I was seventeen. The first gi doctor did two upper gi (exrays) (thinking it was hiatal hernia) tests and one endscopy that lead to the diagnosis of gastritis, which I later found out it literally means in medical terminology inflammation of the stomach. I was put on a drug called Propolsid. If you never heard of it, I'm not surprised. I was put on it while everyone was still excited about the drug because it didn't have the side effects of Reglan and worked like Reglan. How was anyone supposed to know it would kill over 300 people before being taken off the market. The people that died from it mostly used the drug for the same reason I did. So why did I survive? I was a very bad patient. I was good about taking it and keeping an eye on it working etc during the summer but I started college in the fall of 1996 and lived in the dorms where you can't predict when you are going to eat and taking a medication 30 minutes before you eat isn't exactly the easiest thing in the world. Next thing I know, my uncle, who supplied me with samples (he was a cardiologist), was grateful I was not on the drug anymore. Than the appendix thing happened(read last post to learn more). When I was discharged from the hospital (it was overnight procedure in those days and I wasn't eating so I wasn't discharged for three days), I was sent home with Reglan. I found out the hard way why people were excited about Propolsid. Parents who wouldn't take me to the doctor for a stomach ache called 911 during my reaction. I even heard the doctor tell the nurses to give me a muscle reaction which they all agreed with enthusiasm (trust me you can tell it was because of my reaction to the meds). When the surgeon found out, he just put me on an antacid. And that's where the real problem started.  Despite my reaction to the meds Reglan worked, so did Propolsid. Anti-nausea drugs worked too but my theory is because it knocks me out and I don't vomit when I sleep. Every time I tried to get a diagnosis though they took me off the working anti-nausea drugs and put me on the antacids that never ever ever worked. I was sent to gi doctors again who was convinced I had gerd also known as acid reflex disease. When none of the meds worked she had me tested to see if I qualify for surgery. My ph levels were high but my les  was healthy as a horse. So I didn't qualify for surgery and I still don't believe it is gerd. But every time they test me for something else and find out its not that they go back to gerd and try to get me to take another antacid which I wouldn't. They even tried to say it was psychological which took me a year with a psychologist and a dietitian that specialized in eating disorders to prove it was not. At this time my gallbladder pains started up too but I tested negative for gallstones. Every gi doctor seemed to circle around back to gerd. In 2004 a friend of mine needed a ride to the chiropractor and I eventually became his patient too. He found something on my c and t spine. He's treatments were the only thing working for the vomiting and the dizzy spells but the doctors didn't take him seriously and when I started seeing gi doctors again to find out the cause they just kept returning to gerd. Nothing the chiropractor saw or done was taking into account. The fact that the only meds that worked were Propolsid and Reglan was ignored and the more I complained the more I was treated like nothing was wrong. My gallbladder was tested in 2010 for grudge instead of stones after a friend of mine told me that she had hers out because of grudge. It tested positive for grudge. I was so happy. I thought I finally found out what was wrong boy was I disappointed when I didn't stop vomiting, and it went back to diagnosis of gerd. 

A car accident happened two weeks before the gallbladder sugery. Dad was driving and he hit the haystacks (which is the only reason were alive). The front tire was all of a sudden flat and when he changed tires and tried driving we found out one of the tires exploded. This, according to the car insurance, caused the accident. No other car was hit. Dad and I were lucky no one hit us because he couldn't brake and he was going 80 mph from the left lane to the haystacks on the right with a lot of cars coming at 80 mph at us. It was amazing we weren't hit. An old joke I have is if my sister or my mom were in the car there would have been a whole lot more injuries. Dad was completely uninjured and my knee hit the door during the crash so I was sore for about 5 minutes. But my dizzy spells got worse. 

I started getting misdiagnosed with benign vertigo syndrome, that I still like to call fictional vertigo syndrome, after the accident. I never trusted that diagnosis and one night I was so unsteady I was afraid to climb the stairs to get to my room to go to sleep. I got one of my roommates to drive me to the er which was quicker than usual in the waiting room and was too fast in the er itself. The doctor didn't even bother doing a neuro exam diagnosed me with benign vertigo syndrome, gave me a perscription I couldn't fill that night for antimotion sickness that I also repeated told him doesn't work. I was still too afraid to walk upstairs to go to bed so went to a different er. One that I found out later the insurance didn't pay for. The wait in the er waiting room was longer and I was in the er much longer waiting to be seen. The doctor actually did a neuro exam and didn't dismiss it as vertigo but could only suggest having my primary send me to a neurologist. Which he did. That was the first time I had a eeg. I really didn't believe it was seizures but I also didn't believe it wasn't till halfway through the test. I also had my third mri of my brain. My first I was told everything was ok. My second they were looking for the pituatary tumor since my prolactin levels were elevated so they said my tumor was slightly smaller than my previous mri. I asked what tumor. My third, I was in the middle of a fight for in home care and I needed to know if the tumor was still there before the hearing which was days before the doctors follow up appt. I read I have a chiari One malformation(cm1). Which shocked me. I expected the neurologist to tell me what it was and if I had it (my research confused me because it said something about tonsils and I have large tonsils in the throat so I thought that was related its not). The doctor said the tumor was the same size. I didn't accept that and leave. I asked about the CM1 he said it was a birth defeat and explained the brainstem is being squeezed by the spine but he was not convinced it was related to my spells and that I had any of the symptoms. I asked about the surgery and he sent me to an ENT (not at the nih) doctor to real out the ears before he would even consider sending me to and neurosurgeon. The ent doctor ruled out the ears and wondered why I hadn't had to tumor taken out (I still can't answer that other than no ones offered). Before I know it he sent me to the neurosurgeons.

The surgeon did an mri of my cervical spine that revealed a cervical sphingomala (remember the chiropractor finding something on the c well that was it. He just didn't know the extreme of it). He sent me to his colleague that specializes in CM's and that guy sent me for a mri of the lumbar. To this day my lumbar is the only part of my spine that is healthy. He also tried using a I forgot it's name but the machine that pulls your neck into position that you usually are in for an hour. It not only didn't work but it got severely uncomfortable before time to take off. He said he would do the surgery but mom and dad wanted a second opinion and the insurance was taking it's sweet time sending me to one. Meanwhile I started looking into finding one on my own. I have a rare wrist disorder as well and it seems nowhere online or in the medical papers (according to the doctors) is a patient that has both or at least knows they have both. Not many wrists patients have brain mris and not many brain patients have wrists mris. Well I came across a doctor named Dr. Heiss at the NIH. I sent him my info pleading for him to take my case and he told me he has a clinical study at the NIH that I might just fit into it and I applied and got accepted. The time for the next appt was too far as my symptoms were getting much worse and I was not sure I could wait for surgery to be scheduled so I intended to tell him to do the surgery on the first appt I went. The first trip was very interesting. I live in California and so I had to take a flight from California to arizona than arizona to washington dc. I lived in a part of california that didn't have non-stop to washington Dc maybe washington state but not dc. From there I took the shuttle to the NIH in bethesda Maryland (about an hour drive even by shuttle) and the shuttle to the hotel. The next day I had my first of 3 flow studies (done during the 5 year study) that should have been done at home as well which showed an obstruction in the flow of the spinal fluid. I also had pregnancy tests so I could do mris and of course the mri of the brain and the full spine which is when I found out I have a thorasic spinx (remember the chiropractor again). My appt for surgery was made for 2 weeks later and I was to be admitted 3 days early to be evaluated by the endocrinology team and physical therapy and occupational therapy.

TBC 

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