Hyponatremia and Central Pontine Myelinolysis

What is hyponatremia? Information regarding CPM and EPM.

Archive for the tag “Cushing’s Disease”

Drowning my sorrows:

Well folks, there are those days that make you stop and wonder why you couldn’t have been born a Romney.

It’s amazing for me to think that I should be one of the 1 billion people in the world that should have everything handed to me on a silver platter, but I wonder why I wasn’t.

I don’t know where this sense of entitlement originated. My parents were poor. I never had extravagant things growing up. I was happy until the age of 15 wearing my cousin’s hand me down clothing.

After that point, I wasn’t happy with anything. I was a teenager.

So, why is it today I feel an absolute sense of envy of all of those people I believe have more than me or who have never struggled. Is it human nature? Is it me?

Today, I got the news that my younger cousin is graduating from medical school. I am extremely proud of her. She’s always worked really hard. She is smart, beautiful talented, but I have this OVERWHELMING sense of envy.

I’ve wanted to go to medical school for the past 8 years, not because of the lucrative income, but because I’ve wanted to make people BETTER.

I’ve wanted it more than anything. I’ve worked HARD to try to get it over the past 7 years, and just when it seems like I was going to make it, I was given EPM.

I went back to  school full time, worked full time, while taking care of my family just so that I could become a doctor.

I took out TONS in student loans, sacrificing vacations, time with my family and developing friendships, with the goal to become a doctor. I wanted to make a difference in people’s lives.

Last June, I was scheduled to take the MCAT. I was facing the prospect of FINALLY making it, then I was told that I had a pituitary tumor that needed to be removed.

The pituitary tumor was going to be the ANSWER to all of my past medical issues. It really answered everything, and once I had it taken out, there would be nothing stopping me. I would regain some of my health and within a few months I would be able to take the MCAT.

Of course, I knew that by removing the pituitary tumor, I wouldn’t gain absolute perfect health. I still have ongoing issues with autoimmune problems (caused by Cushing’s Disease), but I’ve always been able to work through my going health issues to do what I need to do. My health wouldn’t get worse.

All of this has changed when I developed EPM.

I am still working towards the goal of getting into medical school, but now that goal seems ridiculous, and this time I feel like I might not be able to recover to the point of where I was before.

I struggle with working 5 hour shifts at my current job, working less than 20 hours a week! If I struggle with working my current job, then how am I going to make it through medical school and residency. I don’t know, and it’s so distressing to realize that this dream is fading from my life.

I try to push the negative doubting from my mind each day, but any time I really think about it,  I know that I’m climbing a mountain of ice while wearing roller skates.

Still, I’m pushing blindly forward with my goal, but I know what I’m facing, and I don’t know how I’m going to overcome these odds.

Because of this, I’m drinking away my sorrows tonight. I know that this isn’t going to solve anything, of course, but today it seems like everything I’ve worked towards in the past 7 years has been washed away, and I’m looking at a vast empty space.

(Let me clarify this: I don’t drink alcohol. I get sick if I do, so by saying I’m drinking away my sorrows, I mean I’m having a beer. Yeah, I know…it’s pretty pathetic, but maybe it will help me to feel better.)

I am wallowing in self pity, and I’m wondering; WHY? Why is it that I face such adversity in my life? It ISN’T FAIR!!!

I grew up impoverished, with an abusive, alcoholic father and a victimized mother. I was assaulted when I was 18 and became a single parent. I was in an unfortunate relationship when I was 22 and placed another child for adoption. I found and loved the person I believed was my soul mate, but he died suddenly. After years of handling everything on my own, I found my significant other, but our relationship has been anything but perfect, and after overcoming all of those obstacles, I became ill. Once I get the answer as to why I’ve been sick for so long and have a possible treatment, the surgery for it leads (through the incorrect treatment of hyponatremia) to my developing possible permanent brain damage. Instead of getting better, I become significantly disabled. LIFE ISN’T FAIR!! My life isn’t fair.

WHY THE F__K DO THESE HORRIBLE THINGS HAPPEN TO ME? WHAT DID I DO TO DESERVE THIS LIFE?

Just when everything felt like it was about to fall into place, my life was turned completely upside down.

The only good thing about getting knocked down so many times, is that you’re an expert at getting back up; however it’s never easy.

Tonight, is one of those days when I’m stumbling back down.

I love my cousin, and I’m happy for her success, but I have to stop and wonder; Why can’t I ever get a break?

Am I so far off course in my life that God has no choice but to slam me to the ground every chance He gets?

I wish I had the answer to that.

I should be celebrating my cousin’s success, but instead I’m wiping away tears and drinking away my sorrows. (AND I CAN’T EVEN REALLY DRINK AWAY MY SORROWS BECAUSE ALCOHOL MAKES ME SICK…isn’t that pathetic…)

I hope this finds you in better health than me, and in a position of less envy. Cheers!

 

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My story: The middle….

So, if you’re the random physician, you might have read my beginning story and thought, “hypochondriac”. You might think that if you aren’t a physician. Trust me that crossed my mind over and over again in the past 8 years.

Really…are you really feeling what you’re feeling? Try just sucking it up for a few weeks. Try concentrating on other things. Try the 20th antidepressant because your doctor believes it’s all in your head.

I even went to a psychologist not just once, but for dozens of appointments. I didn’t want to be sick any more than I wanted to have a broken bone.

Being sick robs you of life! You want to take your 6 year old son to the zoo, but every bone,muscle, joint in your body hurts. You want to go on vacation, but you’ve spent every day of your sick and vacation time at home or recovering from surgery. You’ve spent THOUSANDS of dollars on medical treatment, so you can’t afford to send your kid to camp or get a newer car.

To all of those people who believe that I was making it up, that it was all in my head or that I wanted to be sick, this is all I have to say to you: F*** You! Walk a day in my shoes and you would fall to the ground and would never get up.

(I would have totally left the proper cuss word in, however, I was told by Tom it might be a touch dramatic. I guess he didn’t read the rest of my post ;0)

I GET UP! Every time. It’s not easy, and I do struggle with it. I am extremely lucky to have great friends and family in my life that help carry me when everything becomes way too much for me to handle.

I have not given up, not yet. There are days when I want to. Yes, living a life with illness has caused me to make sacrifices. I’ve had to work on days that I could barely move. I’ve missed my son’s football games. I have scrimped to get by and have had to max out credit cards to make sure that I had food and clothes for my kids and me.

Being ill for this many years has PUSHED me to be a better person.

I started back to school while working full time, so that I could become a doctor because I had NO DOUBT that I can make a difference in the lives of other people. Money wasn’t a motivator. Trust me. It would be easier for me to work for less and not go to school than get up each day go to school, then go to work, and then come home and do laundry or homework.

I PUSHED myself to work 40 hours or more a week, while going to school full time, while taking care of my family, while being PREGNANT, while being SICK because of my absolution to help people, because I have been there. I have faced the struggle that 99.9% of the doctors have never faced.

It’s not enough to have an arrogant ass in a white coat tell you they are sorry or they don’t know. You need to have someone who has drunk the foul tasting barium, who has had a half dozen colonoscopies, who has gone years being ill with no answers; that is a person who you want to hold your hand or tell you they don’t know.

I am that person, and that’s why I have pushed myself to do what I have done.

YES, I AM EVERY WOMAN. I AM STRONG. I AM INDEPENDENT, but that doesn’t mean that I’m invincible.

Being told that I had a pituitary tumor gave me an answer, and it gave me a solution. No, I wouldn’t be able to put the toothpaste back in the tube. There were certain things that are irreversible, the auto immune issues, but I knew I could handle those things. I wasn’t going to continue to get worse, at least not from the pituitary tumor. IT was fixable, stoppable, and most importantly I had my answer.

My pituitary surgery happened June 10th. Everything went well with the surgery. There was an issue after the surgery where they thought I might have developed diabetes insipidus (see my earlier posts in hyponatremia for an explanation of what the difference between diabetes mellitus and insipidus are). It was pretty inconclusive. They thought I might have been just drinking too much water. I don’t think this was the case, but I honestly don’t know.

I know I was peeing a lot. I didn’t think there was much of an issue. Diabetes insipidus is when you pee more than you drink. So if you drink 8oz of water but excrete 16oz, then you probably have diabetes insipidus. They continuously measured my input and output, and this is what they felt was my issue.

I was kept in the hospital for 6 days after the pituitary surgery with all normal labs and normal vitals. That was a Wednesday.

Finally, I felt my exodus was over. There was a light at the end of the tunnel.

Friday morning, I woke up. I had a headache, but I really felt it was from the pituitary surgery. Then, I noticed my feet were cramping.

I’ve had muscle spasms in my feet since I was a kid, so I really didn’t believe this was anything new.

I had to go to the grocery store, so Tom and I went. It was there that my feet started cramping again. Now, this was unusual. The cramping felt different from when I get the spasms in my feet, but I didn’t think too much about it.

When I got home, I just felt-blah. I felt weak and tired. I ate some watermelon, drank some tea, and went to bed.

I woke up, went to the bathroom, ate some watermelon, drank some tea, and went back to bed.

I really felt off.

The next time I woke up, I felt really bad. I knew there was something radically wrong. The headache was just not going away. It was starting at the base of my neck and radiated through my brain. I felt sick to my stomach. My feet cramped when I stood up. I couldn’t tell if I was going to pass out or vomit.

I told Tom, he had to take me to the ER. I didn’t think I was going to live. (Yeah, I know, but there was this strange feeling, different from times in the past when I felt really sick. Can’t truly explain it, but you’ll know it if you’ve gone through it.)  I thought I was going to have to call an ambulance. (Tom was picking up our son, Zack, from a friend’s house, so he wasn’t home when I made the decision that this was really bad.

It seemed like an eternity for him to make it home and for me to get to the ER. I don’t remember much when I got there. This was around 11pm to midnight Friday night.

I remember going in and out of consciousness. I remember asking for pain medications. I remember at one point they did a CT scan, but I don’t remember getting back and forth from the room or having it done.

I remember a doctor coming in and telling me that my CT was normal. I thought, oh my God, they are going to send me home, but part of me didn’t care. The other part of me wanted to fight.

I was really lucky that they didn’t.

I think he came back later and he told me that my sodium levels were too low and that I would need to be transferred to the main hospital. I had a sodium level of 118.

They actually repeated the test to make sure it wasn’t a lab error. It came back 117.

I felt horrible.

I asked for pain and nausea medications over and over again because I couldn’t remember them giving me any. I just kept going in and out of consciousness. I want to stress this is not like falling asleep. Falling asleep you can generally fight. This I had NO control over.

I remember at one point I got up to go to the bathroom. The nurse asked me if he needed to assist me. My stubbornness and humility was still prevailing at this time, and I refused his help. I was really, really, lucky I didn’t pass out on the way to the bathroom.

Around 5 or 6 am I got transferred. I felt a huge moment of relief because I really thought this meant that I would get relief. I felt once I got there I was going to be better.

I remember being loaded onto an ambulance. I don’t remember the ride there. I remember staring at lights as they wheeled me down the hallway.

I remember being pushed through the doors of the ICU room where I was going to stay.

The next thing, I remember was waking up and it was morning, but I had NO idea what day it was. I didn’t know if I was out for a few hours or if days had passed. I knew where I was. I knew I had to go to the bathroom.

I know the nurse asked me questions. I thought it was Sunday. However, I don’t think it really was now. I think the nurse misinformed me.

I never went into an actual coma. I was in and out of consciousness the first day.

I believe I was still able to text my friends and family that morning to let them know what was happening.

Tom had left me the night before at the ER. He didn’t realize what serious condition I was in, and he went home to be with the kids.

I’m going to leave it here at this point because I wrote notes to myself about what I experienced a long time ago. My memory fails me now. I have to go back through my notes to know for certain what actually happened next.

I hope you find strength in this so far. I hope you understand that just because you have been sick or have faced issues, doesn’t mean that this is the end of the story. It’s just the middle. You’ve got a lot more ahead of you both good and bad, but it’s definitely not over.

Have faith.

My Story: The beginning….

Today has been a rough day for me. I’m physically and mentally exhausted, and I really feel like giving up. Yes, partly because of the CPM/EPM, but mostly because all of the other health issues I’ve faced in the past 8, going on 9, years.

In the beginning, I thought I had the flu. I had low grade fever, aches and pains, nausea, vomiting, and abdominal pain. It was the first time I actually had to call off work for illness. I had NO idea that it was the beginning of an incredibly long and pain filled journey.

I really thought that in a few days, I would be back to 100%. I had a friend recommend seeing their family doctor when I complained that I was fatigued and gaining weight for no reason. She felt that it was a thyroid issue because she had a similar problem. A few weeks later, I got the “flu”.

I went through a long process of testing and blood work. The tests kept coming back normal. My thyroid was in the lower limits of normal, but still normal. My CBC was normal, and as more blood tests came back normal I felt more and more nervous. What was the issue?

I had ultrasounds and a CT scan. That was normal.

I saw my ob/gyn, my gp, and a GI specialist. The GI doctor told me that there was nothing physically wrong with me and that it was probably psychological issue.

I went to a new GP. I felt that since the GI doctor sent that report to my original GP, and all of my other tests were normal that the GP would probably agree with the GI doctor. I shouldn’t have done that. My original GP was a good doctor. She had not thrown in the towel on my care, but I believed others view point would impact her decisions.

I went to a new GP, and he began to run the same tests again. He believed that despite normal CT scan and blood work that I could have an issue with my appendicitis. There’s something called an acute appendicitis and chronic appendicitis. The acute version can be the life threatening kind that develops suddenly and lead to rupture. The chronic causes chronic abdominal pain, low grade fevers, nausea and vomiting.

This GP contacted a surgeon who was his friend and requested an exploratory surgery. (My previous GI doctor told me that no one does exploratory surgery. He said, it was outdated medicine.)

The exploratory surgery revealed endometriosis. I had never heard of it previously, but it causes abdominal pain, nausea, vomiting, extreme menses. It can cause intestinal bleeding. It can evade the lungs and cause bleeding in the lungs. It can actually be found in the brain as well.

My endometriosis was not severe, but the surgeon felt that this explained my symptoms 100% percent, and I was relieved, but I also felt a nagging uncertainty. It did not explain the fatigue or weight gain or hair loss, but my abdominal pain was gone.

But my relief only lasted 3 weeks! It was about the time that I stopped taking pain medications that my pain came back. Along with the pain, the nausea returned.

It took me about another 12 months of constant illness to have a repeat hida scan. This is a scan that tests the function of the gallbladder. I was told by my original GI doctor (the one that told me that a psychologist would be more benefit than an MD), that my first hida scan was normal.

The second hida scan was severely abnormal. It showed that my gallbladder function was less than 13%. This made my new GI doctor and GP think that my pain, nausea, etc was being caused by my gallbladder. So, I went through gallbladder surgery.

Again, I experienced temporary relief, approximately three weeks.

I continued to experience intestinal bleeding and anemia. These issues centered around my menses. It was thought that this was being caused by endometriosis of the intestine or colon.

Trying to catch the lesions of endometriosis in the intestine and colon is like trying to staple jello to a tree. It’s next to impossible.

Endometriosis is a disorder where uterine cells are found outside of the uterus. These cells are impacted by the same hormones as your menses. SO, every month these cells respond to estrogen and progesterone and swell, fill with blood and causes inflammation. Over time it leads to scar tissue. It also causes heavy menses, severe bleeding, abdominal pain, painful sex, etc. One of the biggest problems associated with endometriosis is infertility.  The scar tissue that is caused by endometriosis can act as a super glue in your abdominal cavity. It can cause your intestines to bind together. It can implant in the kidneys, ureter. It can infiltrate  the intestinal wall and cause intestinal bleeding. It can actually travel to your lungs and cause you to cough up blood, and further it can travel to the brain via the circulatory system and cause bleeding in the brain. However, it is most commonly found surround the uterus and the abdominal wall surrounding the uterus.

There is no cure for endometriosis, but the most common treatments are pregnancy, birth control, lupron, and hysterectomy. None of these treatments are 100% guaranteed, not even hysterectomy.

After my issues with endometriosis and my gallbladder were treated, I developed yet more symptoms. I still had issues with fatigue and abdominal pain, intestinal bleeding, hair loss, weight gain (or at least I couldn’t lose weight), muscle and joint pains, intestinal issues. Plus, I started developing tachycardia and shortness of breath.

I went through an ERCP and that specialist (an excellent doctor) determined my biliary duct was almost completely blocked. It was extremely swollen. I was also having issues with gastroparesis, gastritis, and slowing of my intestines.

After the ERCP, I felt better, but not perfect. My thyroid was still coming back low, but in the normal range.

In 2007, Tom and I decided to try to have a baby. We thought this would be a great way to manage the endometriosis without my having a hysterectomy. (I don’t do well with hormones and because I previously had superficial blood clots, I didn’t want to take a chance with birth control).

We actually got pregnant immediately, but at the 12 week mark, I had a miscarriage. I had never had a miscarriage before, and because my cousin had issues with Antiphospholipd syndrome. My cousin and I had very similar medical history’s. She had significantly more miscarriages than I, and over her trials and tribulations it was discovered that she had antiphopholipid syndrome.

Because we were practically twins (she’s a year older), but we grew up in the same area. We grew up together, played together. We were very close and had similar chemical exposures, so I asked my ob/gyn to run the testing for antiphospholipid panel.

It came back minimally positive.

I was sent to a hematologist who believed that my symptoms were being caused by acute intermittent porphyria. My 24 hour urine analysis showed a fairly significant elevation in uroporphyrins, but other tests like porphobilinogens came back normal. We tried for months to get a conclusive diagnosis for AIP, but my future tests came back normal.

Talk about frustrating.

I was still experiencing intestinal bleeding (intermittently). I was still having the fatigue and muscle aches, and all the other crazy symptoms.

SO, I decided it was time to see a rheumatologist. She found the elevations yet again in my APS antibodies. She ran several other autoimmune panels. Everything was normal except for APS.

At this time, I began to wonder how unlucky was I? Did I really have endometriosis, IBS, chronic fatigue (I had positive Epstein Bar antibodies), APS, and AIP? I also had developed tachycardia, palpitations, and hypertension.

I took the advice of my original GI and began to consult a psychologist. I think she believed that my issues were psychological at first, but after 12 months or so, I think she became convinced that even though being ill did stress me out, my health issues were real. She helped me to find ways to deal with the anxiety related to the issues.

After I became pregnant in 2007, I tried for 6 months to become pregnant again. It didn’t happen. It was at that time that I discovered I had hormone issues with FSH/LH. I wasn’t having an LH surge.

Luckily, it took one series of fertility treatments to become pregnant. My body just needed a nudge to get me pregnant.

I took Lovenox through out my pregnancy to treat the APS. Despite treatments, I did experience issues with the pregnancy. My little girl was growth restricted. I also had issues with amniotic fluid levels, and because of the growth restriction, Izabel was born at 36 1/2 weeks. She only weighed 4 lbs 12 oz. She was pretty small considering she was almost term. (There were no doubts about the dates I became pregnant because of the fertility treatments.)

I was not expecting it, but I became pregnant again 9 months later. I was shocked, but excited. We lost that baby at 10 weeks despite Lovenox treatments.

Miscarriage is hard, but we got through it.

The really surprising thing for me was that while I was pregnant I LOST weight. It was the first time in 6 years of trying to lose weight that I was successful. The truly unbelievable part of it was that I was NOT dieting. I was eating a TON of food each day. It was not uncommon for me to eat a huge steak dinner or an 8 oz hamburger, and I LOST weight.

It was at this time that I really began to realize that I had an issue with hormones.

After being sent to doctor after doctor at a major hospital for different issues like hypertension, the risk of blood clots, the fatigue, dizziness with standing and sitting. I was sent to one of the BEST doctors in the world Dr. Hatipoglu. She believed that my issues were probably hormone related. She felt even more so that my problems were due to high cortisol.

In the in between time, I had an abnormal scleroderma antibody test. Now, if you don’t know much about scleroderma, it’s pretty scary. I haven’t been conclusively diagnosed with scleroderma, but it has been suspected.

So, this made me wonder, WTF! Really, more disorders? Well, Dr. Hatipoglu explained it to me. We researched the uroporphyrins…guess what? Cushing’s can cause elevated uroporphyrins! Guess what else?! It can cause APS. When you have one autoimmune disease, it is not uncommon to have more than one. Guess what…It is normal to have both scleroderma and APS. Those who have scleroderma also generally have endometriosis.

Yes, so, it seems that Cushing’s Disease was the primary disease which is what caused the initial weight gain and other issues. Either, I had endometriosis to begin with (which is what I expect), and the Cushing’s and endometriosis together caused the autoimmune issues (APS for sure and possible scleroderma). I was also eventually diagnosed with hypothyroidism.

Some of my cortisol levels came back abnormally high, others came back normal. This is known as cyclic Cushings. After several months of cortisol testing, I went through a more accurate specific test to determine if my Cushing’s was being caused by a pituitary tumor. It’s called petrosal sinus sampling.

After having that procedure done, there was NO question that I had a pituitary tumor. My levels were significantly abnormal. There was no doubt that I Cushing’s Disease.

Finally everything was starting to make sense. I probably don’t have AIP, but I definitely have APS, Cushing’s Disease, and endometriosis.

(Not related to the pituitary/ Cushing’s issue–but they also found ulcerations in my small intestine and abnormal microvilli. I believe without question that these abnormalities are what has caused the intestinal bleeding. I also believe that it’s related to endometriosis. After years of trying to explain the intermittent intestinal bleeding, I had proof that I not only had it, but what it probably was.)

Eight years of illness was finally answered. I knew what the problems were. I knew what the solutions were, and I could at least fix the source of these medical issues. I could remove the pituitary tumor.

Despite being sick for years, I have never given up. Of course, I’ve felt overwhelmed. I’ve felt depressed at times, but I knew there were answers somewhere.

After finally having an answer, Cushing’s Disease, I believed that my life would finally change for the better. I felt that I would definitely be able to get into medical school. My future was beginning to look a bit brighter.

What happened next was completely unanticipated, hyponatremia. Now, I face one of the greatest challenges, one of the biggest hurdles. I wonder if the 8 years of ongoing illness was the warm up to this. Maybe, I had to go through all of this to be strong enough to get through the brain damage.

I don’t know, but that’s the beginning. That’s how I got to this point in my life.

Now that I’m on this mysterious leg of my journey, I wonder if I have the strength that I need to do what I need to do. I wonder if I have the ability to get back to where I need to be.

I feel my will power weakening. I feel doubt surfacing. I’m at a precipice in my life, and I wonder if I get away from it.

I will continue my posts on my CPM/EPM story by discussing how I got hyponatremia and how the inappropriate treatment has brought me to this point in my life.

Thank you for “listening” and thank you for your ongoing support. Please feel free to share your story. It’s important to healing.

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