My EPM story: the diagnosis:
Up to this point, I have talked about how I developed hyponatremia, how it was treated incorrectly, and how I tried return to the local hospital (the place that treated my hyponatremia) THREE times to get treatment for my developing issues with EPM.
The last trip to my local ER, I asked for a MRI because I was almost positive that I had developed EPM. Instead, they attempted to admit me for observation because of the reaction I had from their doctors, I decided it would be better for me to travel to meet with my ENT and endocrinologist.
After hearing about my issues, they were also determined to get me into to see a neurologist, despite it was the Thursday before the Fourth of July. Trust me, despite going to a HUGE hospital with hundreds of doctors, trying to get an appointment with one of their 50 or more neurologists was a big deal.
Tom and I had no idea what was going to happen next.
I left my local ER around 7pm. I was pumped full of narcotics and was almost dead to the world. I mean, I really did not know what was going on.
I got home, and I think it was at some point around 3 or 4 am, we started our oddessy. We had our three year old with us, and this trip was unexpected. We had no idea how long we would be gone, or what we would need.
I guess we planned for the worse because we didn’t run out of clothing, etc. Granted, I spent my time in a hospital gown.
So, our trip up to the hospital was awful. I had a splitting headache. I didn’t feel well. My daughter was acting like all three year olds. At first, she slept but around 9am, we stopped to get breakfast.
It became absolutely clear there was a problem when I tried to order breakfast for us. Tom had gone to do something, find a table, I don’t know what, so I was left at the counter alone to order.
I knew what we needed, but I was having trouble understanding what the girl was saying. I was extremely frustrated. All I had to do was give the girl the numbers and tell her what drink we needed with each. Tom’s order was easy. Izabel is a picky eater, so I had to make adjustments with her order, and I had a hard time asking if they had pancakes or cereal. I had a hard time explaining that I needed milk with her meal not coffee. The most frustrating thing was when I wanted to change the kind of cheese on my order. I didn’t want Swiss cheese that normally came on the sandwich, I wanted American cheese.
I kept telling the cashier: I don’t want cheese. I want cheese.
Of course, she looked at me like I was retarded because I was.
I tried to explain further: Not cheese. Yellow cheese.
My entire order was like that; I couldn’t express the changes I wanted to make. I had a hard time asking for coffee with Tom’s meal. I had a hard time finding out if they had cereal, and by the time it came to my order, I was left to pointing irrationally at the pictures on the wall. Number 6, no cheese, cheese. I don’t want cheese. I want cheese.
Yeah.
I KNEW what I wanted. I couldn’t say it. AND, these episodes kept skipping. It wasn’t continuous issues with communicating. Talk about feeling like you’re going completely nuts.
Shortly after we left Arby’s, I started experiencing the crippling stomach pains which I no longer was considering as an issue for porphyria but for my adrenal glands.
With all the physical and mental stress I was having, it isn’t difficult to believe that my adrenal glands were becoming stressed. Maybe it’s not my adrenals, maybe it is AIP, maybe it’s both…I really think only God truly knows, but all I did know is that sugar/glucose would stop the pains.
So, Tom and I went off track to find a CVS or other drug store to pick up a bottle of glucose tabs. This delayed our getting to the hospital, but trust me I don’t think I could survive an attack of crippling abdominal pain.
After a shot of liquid glucose and about 1000mg of glucose via tabs, the pain subsided a bit. I was feeling more nausea, but the painful cramps weren’t as bad.
I swear this trip was CRAZY. I think it took four hours longer than it normally does, and I can not explain WHY it took so long. I mean, there was the stop for breakfast. There was the stop for glucose. We did hit road construction at some point, and then there were at least three potty breaks for Izabel.
During the drive, we were also working with an awesome receptionist for the neurology department to try to get an appointment with a neurologist. All of the neurologists were booked or gone already for the 4th of July weekend.
They could only make the appointment for about a WEEK from that date.
At this point, I still had no true clue as to what having EPM or CPM meant. I really didn’t understand that I was in a life threatening situation.
I believe I had read about it, but it didn’t sink in that this was really what was going on with me.
I was relieved when I got to my first appointment with my ENT. I really thought that he must have left packing in my sinuses and that this was going to be the reason I was having such a horrible headache.
I remember sitting in the waiting room, extremely calm. My little girl was striking up a conversation with another little girl. Tom was looking up the newspaper on his laptop, and I was just waiting.
I tell you. I was still experiencing difficulties speaking. Then they did the torturous search of my nasal cavity and sinuses. They spray your throat and nose with a numbing spray, and I was getting extremely ill from the spray. It’s supposed to taste like bananas. It doesn’t. Some people don’t have any issues with it, but other people, like me, the numbness triggers your gag reflex and you because extremely ill.
Then they slowly insert this 1/4 inch diameter, flexible, rubber hose with a scope on the end up your nose.
It doesn’t seem like they should be able to get that much of the hose up your nose (ha, that rhymes), but they did, and I can’t imagine having an alien abduction be more painful or uncomfortable. Just saying.
The ENT reassured me that things looked good. He assured me that there was no packing in my sinuses. He assured me that the surgical site was looking great. However, he was concerned with my neurological issues. He was glad that I was going to see my endocrinologist. He thought I should be hospitalized, but he wanted me to see the endocrinologist first.
So, by this point, I needed a wheelchair to get around. I was truly nauseous, dizzy. I was having issues with my balance. I had the horrible headache.
My endocrinologist is the most awesome doctor in the world, with a close second for my neurosurgeon and an even closer third with my ENT. Truly, I’ve been to hundreds of doctors, or at least a hundred. I’m not sure if that’s an exaggeration. I’ve seen a lot of doctors, so please believe me when I say, these doctors are amazing.
My endocrinologist was disturbed at my neurological issues. She was concerned at how long they had been going on. I told her that I thought I had CPM. I explained why I thought I had CPM. She didn’t arch her eyebrows. She didn’t give me a smirk or a shrug.
She told me that it would be unlikely for me to have CPM because I was 34. She believed that only babies and old people developed CPM. I became concerned that she wasn’t going to do anything.
She left the room to try to get an emergency consult with a neurologist. She checked back with us in about 10 minutes to let us know that the neurology department had not gotten back with her at that point.
She came back five minutes later to tell me that there weren’t any neurology appointments available, and so she was going to admit me. She felt I needed to have a MRI, NOW, not a day from now, not a week from now, NOW.
I was checked into the hospital and in my room in about an hour.
I was seeing the neurology residents in about 15 minutes after that. I was seeing another neurologist about an hour after that.
I was given another IV, pain medications, and because my endocrinologist totally believes me, she also requested the IV glucose to help with whatever it was, adrenal crisis or porphyria. (Even though my endocrinologist ordered it, the neurology department-unbeknownst to me- did not want me to have the glucose treatment, so that wasn’t started. This caused my abdominal pains to become unrelenting.
By 11pm that night, I was being wheeled down for the MRI. Trust me, even though my endocrinologist and ENT believed that I was experiencing a major problem, this belief was not as well received by the neurology department. I got arched eyebrows. I got the smirks.
I was desperate that they find something on the MRI. I KNOW that sounds funny. I KNOW that sounds crazy, but when you’re in that much pain, when you have that significant of a problem, the last thing you want is for them NOT to find anything. Trust me, when you have that many arched eyebrows and funny looks, if they came back with there’s NOTHING on your MRI, the next place you’ll be heading to is the psych ward.
My relief became absolute. My confidence in myself became iron clad, when the neurology resident came rushing into my room.
Resident: You were right. You were right. You have myelinolysis. THEY DID THIS TO YOU. THEY ARE 100% responsible.
I think I was on the verge of tears. I can’t remember exactly what he said after that. This injury was out of his league, and he assured me that the fellow in neurology would be in to see me in a very short while. He stressed that this was a serious issue and that the fellow was actually coming in from home to see me.
I had my answer. I had my reason. I wasn’t crazy. I didn’t have a stroke. I was right. I WAS RIGHT.
I wish that I could say, that’s it. That’s all that happened, but it’s not. The story does continue. Maybe, now, you’ll see why I’ve chosen to write about this later. It’s easy to become distracted and angry about what happened.
It can consume you.
Plus, it’s a hell of a long story. I mean, these are by far the longest posts that I’ve made, and they take the longest to write. It’s really exhausting, but I really feel, you need to know. You deserve to know. You need to learn to trust what you feel and to fight for what you’re going through. You need to understand that even the most prestigious hospitals in the country are fallible. You need to ask questions and push for answers, even when you meet resistance.
I hope this helps you with your struggles or helps to push you forward when you feel like giving up. You aren’t alone.
Hyponatremia and Central Pontine Myelinolysis 