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 He said, it was outdated medicine.)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.
Hyponatremia and Central Pontine Myelinolysis 