There is a longstanding tradition on Tumblr, in which bloggers participate in "TMI (Too Much Information) Tuesdays". It looks as though I'm going to carry that tradition over to Blogspot with this post.
You may have noticed that I have been relatively absent over the last two to three weeks. I would like to say that I have been on Spring Break in Ft. Lauderdale. Sadly, that hasn't been the case. Instead, I have spent most of the last two weeks in two different hospitals. Connected to machines, being poked and prodded every fifteen minutes, and being served food I wouldn't even give my dog.
The problems started two weeks ago. I was walking in Petsmart around noon with my little girl and my legs gave out. My knees buckled. If it wasn't for the fact that I was pushing a shopping cart, I would have hit the ground. Fifteen minutes later, it happened again. Then again a half hour later. I didn't have any pain in my legs. They weren't weak at all. It was like someone flipped off a switch in my brain and quickly switched it back on again. Someone pressed a reset button for my legs.
At about four o'clock that afternoon, I was chasing after my daughter at the mall, and it happened a fourth time. That was when I started to freak out. I called my primary physician, and explained to him the situation. I asked him whether I should come into urgent care or go to the hospital. He said that considering my symptoms, he wouldn't have any of the equipment necessary to test for potential conditions. He referred me to the hospital.
I got to the hospital on Monday night at around 8PM. After explaining what had happened over the course of the day, they took me back to triage to get some blood samples taken. Meanwhile, they called my neurologist.
Let me tell you how much of a rock star my neurologist is. I am sitting in the waiting room, and the nurse comes out, a little dumbfounded, and says, "I don't know who your doctor is, but you need to stay with him." "Our MRI team went home four hours ago, and your doctor is forcing our doctors to call them at home and make them come back in." (Yeah, he's a BAMF.) He informed the ER doctors that they must admit me, and not to release me until a certain list of tests were done and results were in.
When I was admitted to my room, I was informed that my blood sugar that night was 346. I had had a Coke and a cocoa from Starbucks over the course of the day, but, besides that, I didn't have anything to eat since 11AM. My blood sugar should have been around 100 or less. I also found out that my A1C, the 3 month average of my glucose levels, was at 9.7. They should be below a 6. I had them checked roughly 6 weeks prior, and there were no red flags from my doctor. A 9.7 A1C is a level that makes you insulin dependent. So, in a matter of six weeks, my pancreas had effectively stopped working. It's not as if I am a Type 2 Diabetic now. I didn't get this way from being a fat bastard that couldn't control his diet. We're talking six weeks. Going from healthy, to daily insulin shots.
My primary physician calls it "Type 3 Diabetes". It's obviously not Type 2. It has the same features as Type 1. It appears to be an autoimmune response. But, Type 1 initially appears in juvenile patients only. That being said, I don't have Type 1. So, I have "Type 3", or maybe "Type 1B".
Oh, and get this: I found out, when I checked into the hospital two weeks ago, that since December of last year, I've lost 50 lbs. (I've lost 10 more since then.) I haven't changed my diet at all. I haven't exercised. I'm still taking in just as many calories as I did four months ago. I haven't weighed this much since I was a junior in high school. Don't get me wrong. I needed to lose the weight anyway, but to lose it so quickly, without trying, is a little scary.
So while I'm in the hospital (the first time), I have an EEG (brain scan), a CAT scan, and 6 hours inside an MRI. They get a full workup of my brain and head, my neck, and my complete spine. They find absolutely nothing to explain what would make me collapse. What they did find out was pretty remarkable, though. The normal brain on an MRI looks like this:
My brain is a little abnormal. It doesn't sit straight in my skull. It's slanted back. It's the creepiest thing. If I can figure out how to break the copyright encryption on the imaging DVD, I'll post some pics of my images. I also found out that I have either 6 or 7 herniated discs in my back. Some aren't so bad. Some are. The doctor at the hospital said that he's surprised that I'm not complaining of back pain. There are a couple of herniations that are pressing on my spine. My spine doesn't curve like it's supposed to. It's pretty much dead straight. I have follow up appointments now to determine the seriousness of the herniations, to see if spinal surgery may be needed. If so, they will have to enter through my breastbone. From what I have been told, it's pretty gruesome. Estimated downtime is six months after the procedure.
And now, for something completely different....
(For you 'Big Love' fans out there. That was Julia Nunes, singing the Beach Boys' 'God Only Knows')
OK. Moving on. I was released on Thursday, the 10th, and saw my neurologist the following Monday, the 15th. He pretty much ruled out Multiple Sclerosis, but wanted to do a couple more tests, just to make sure. During the neurological exam, he very quietly mentioned ALS to his assistant a couple of times. ALS is commonly known as Lou Gehrig Disease. It's fatal. Usually, from the time you're diagnosed with it, you're dead within 3-6 years. ALS doesn't show up on an MRI. It really doesn't show up anywhere. The only way to diagnose it is to test for everything else, and if everything else comes back negative, ALS is the likely culprit.
Tuesday the 16th, I was OK. My legs were weak, but I was able to walk fine with the walker that the hospital provided me the week before. Then at about 2PM, my legs just stopped working. It was like someone cut the strings off of a marionette. An hour later, I lost control of my bowels and my bladder. About two hours after that, the bones in my upper arms became so sore, it felt like someone was trying to dislocate my shoulders. I had no strength in my upper extremities. I called my neurologist. He called me back and said to get admitted immediately at the Mayo Clinic hospital here in Phoenix.
Within a half hour of getting in to the ER at Mayo, they had already drawn 16 vials of blood. At 2AM, I had a neurologist at my bedside doing an exam and asking me questions. It was impressive to see a staff like that operating in the middle of the night. At 8AM every morning, I had a team of 6 neurologists standing at the foot of my bed, discussing their plan for me for the day.
I had more MRIs completed, and an EMG. Let me tell you, an EMG sucks. They put little pads on different spots on your arm, hand, leg and foot, then they stick what amounts to a miniature cattle prod up to various points on your body where nerves are supposed to be. Then they test the speed of that electrical signal. It hurts like a motherfucker, and your leg is just bouncing across the bed, like you're keeping time to a song in your head. If that isn't enough, then they stick a two inch long wire into certain muscle groups to check for an electrical signal. Once the wire is in, you have to relax or flex a specific muscle. Then they move the wire around until they find the signal they're looking for, like it's an AM radio station that's broadcasting from your thigh.
Last Friday morning was exceptionally noteworthy. I had two gentlemen from physical therapy come in to work with me. They brought a pair of three pound dumbbells with them for me to exercise with. My upper body was so weak, and still is, that they had to exchange them for two pound weights because I couldn't lift the three pound weights over my head. Then they had me do leg raises while sitting on my bed. Once I lifted my leg to a particular height with either leg, I would get a jolt of electricity through my leg, and twitch.
They had me stand up and try to march in place. I started with my left. First left. Then right. Then left again. As I started to lift my right leg up for the second time, I started to shake. My whole body went into what I can only describe as a full body stutter. I couldn't talk. I couldn't move, other than to keep shaking. It lasted for more than 45 seconds. I have had tens of thousands of Tourette's tics over the last five years, and let me tell you, this was not a Tourette's tic. This was a seizure.
I told the neurologist 20 minutes later when he came in to see me. He said that it was impossible for me to have a seizure, simply because I did not pass out. I was conscious during the event. It was then that I started to get the feeling that Mayo wasn't going to be of much help to me.
A couple of hours later, a neurologist came in and told me that I was going to be released. They told me that I had no nerve damage, and, that I was being diagnosed with a "movement disorder". NO SHIT. They couldn't tell me what brought on said "movement disorder", but suggested that it may be attributed to recent stress. Keep in mind, I still can't walk. My upper body is still so weak, that I have to lay back and rest after reading the newspaper for five minutes or so. And the whole bladder/bowel thing? It's still a little sketchy. The neurologist, a condescending, mid twenty-something, holier than thou bitch, actually had the balls to suggest that I see my therapist (my psychologist) once a week to try to get my legs working again. She also is scheduling me for physical therapy three times a week, which I can't afford. What I don't understand is this: If this is a movement disorder, in the same spectrum as my Tourette's Syndrome, of what benefit would physical therapy be? Physical therapy can't fix my Tourette's. How can it fix this? It's not a problem with my muscles.
In the course of our conversation, the neurologist said, "You're fine as far as we can tell". I replied, "I can't fucking walk". She said, "Well, you can with a walker".
They gave up on me. I wasn't bleeding. I wasn't dieing. They did a series of blood work, an hour of MRIs, and an EMG. From the moment I walked in, they had originally thought I had a condition called Guillain-Barre Syndrome. When tests turned out that I didn't, they let me go. This is one of the most respected hospitals in the nation. People come here from all around the world specifically just to be treated at this facility because of their reputation. I would have rather gone back to the hospital I was originally at.
So, I'm home now. I still can't walk. I started having convulsions yesterday. I called MY neurologist yesterday for further instructions. He is on vacation until April 4th. His business partner may see me, or I may be sent to another hospital this week. He is really good about getting back to me, even when he is out of his office. He once returned my call from his cell phone when he was in the airport in Lubbock, Texas. I told you, he's a BAMF.
I would like to thank everyone for their kind words, both on the blog, and on Facebook. It's nice to know that so many of you are concerned, and you are all strangers. Thank you so much. You keep me going some days.
You may have noticed that I have been relatively absent over the last two to three weeks. I would like to say that I have been on Spring Break in Ft. Lauderdale. Sadly, that hasn't been the case. Instead, I have spent most of the last two weeks in two different hospitals. Connected to machines, being poked and prodded every fifteen minutes, and being served food I wouldn't even give my dog.
The problems started two weeks ago. I was walking in Petsmart around noon with my little girl and my legs gave out. My knees buckled. If it wasn't for the fact that I was pushing a shopping cart, I would have hit the ground. Fifteen minutes later, it happened again. Then again a half hour later. I didn't have any pain in my legs. They weren't weak at all. It was like someone flipped off a switch in my brain and quickly switched it back on again. Someone pressed a reset button for my legs.
At about four o'clock that afternoon, I was chasing after my daughter at the mall, and it happened a fourth time. That was when I started to freak out. I called my primary physician, and explained to him the situation. I asked him whether I should come into urgent care or go to the hospital. He said that considering my symptoms, he wouldn't have any of the equipment necessary to test for potential conditions. He referred me to the hospital.
I got to the hospital on Monday night at around 8PM. After explaining what had happened over the course of the day, they took me back to triage to get some blood samples taken. Meanwhile, they called my neurologist.
Let me tell you how much of a rock star my neurologist is. I am sitting in the waiting room, and the nurse comes out, a little dumbfounded, and says, "I don't know who your doctor is, but you need to stay with him." "Our MRI team went home four hours ago, and your doctor is forcing our doctors to call them at home and make them come back in." (Yeah, he's a BAMF.) He informed the ER doctors that they must admit me, and not to release me until a certain list of tests were done and results were in.
When I was admitted to my room, I was informed that my blood sugar that night was 346. I had had a Coke and a cocoa from Starbucks over the course of the day, but, besides that, I didn't have anything to eat since 11AM. My blood sugar should have been around 100 or less. I also found out that my A1C, the 3 month average of my glucose levels, was at 9.7. They should be below a 6. I had them checked roughly 6 weeks prior, and there were no red flags from my doctor. A 9.7 A1C is a level that makes you insulin dependent. So, in a matter of six weeks, my pancreas had effectively stopped working. It's not as if I am a Type 2 Diabetic now. I didn't get this way from being a fat bastard that couldn't control his diet. We're talking six weeks. Going from healthy, to daily insulin shots.
My primary physician calls it "Type 3 Diabetes". It's obviously not Type 2. It has the same features as Type 1. It appears to be an autoimmune response. But, Type 1 initially appears in juvenile patients only. That being said, I don't have Type 1. So, I have "Type 3", or maybe "Type 1B".
Oh, and get this: I found out, when I checked into the hospital two weeks ago, that since December of last year, I've lost 50 lbs. (I've lost 10 more since then.) I haven't changed my diet at all. I haven't exercised. I'm still taking in just as many calories as I did four months ago. I haven't weighed this much since I was a junior in high school. Don't get me wrong. I needed to lose the weight anyway, but to lose it so quickly, without trying, is a little scary.
So while I'm in the hospital (the first time), I have an EEG (brain scan), a CAT scan, and 6 hours inside an MRI. They get a full workup of my brain and head, my neck, and my complete spine. They find absolutely nothing to explain what would make me collapse. What they did find out was pretty remarkable, though. The normal brain on an MRI looks like this:
I found out that I have what is called a Chiari Malformation. That means that the way my brain grew in my skull, the tonsils, or the little nubs on the bottom of my cerebellum hang down below my skull. Mine actually rest on my spine. It may explain why I have migraines as often as I do, as well as constant pain in the base of my skull. Here is a picture of an MRI of someone with a Chiari Malformation. THIS IS NOT MY MRI.
And now, for something completely different....
(For you 'Big Love' fans out there. That was Julia Nunes, singing the Beach Boys' 'God Only Knows')
OK. Moving on. I was released on Thursday, the 10th, and saw my neurologist the following Monday, the 15th. He pretty much ruled out Multiple Sclerosis, but wanted to do a couple more tests, just to make sure. During the neurological exam, he very quietly mentioned ALS to his assistant a couple of times. ALS is commonly known as Lou Gehrig Disease. It's fatal. Usually, from the time you're diagnosed with it, you're dead within 3-6 years. ALS doesn't show up on an MRI. It really doesn't show up anywhere. The only way to diagnose it is to test for everything else, and if everything else comes back negative, ALS is the likely culprit.
Tuesday the 16th, I was OK. My legs were weak, but I was able to walk fine with the walker that the hospital provided me the week before. Then at about 2PM, my legs just stopped working. It was like someone cut the strings off of a marionette. An hour later, I lost control of my bowels and my bladder. About two hours after that, the bones in my upper arms became so sore, it felt like someone was trying to dislocate my shoulders. I had no strength in my upper extremities. I called my neurologist. He called me back and said to get admitted immediately at the Mayo Clinic hospital here in Phoenix.
Within a half hour of getting in to the ER at Mayo, they had already drawn 16 vials of blood. At 2AM, I had a neurologist at my bedside doing an exam and asking me questions. It was impressive to see a staff like that operating in the middle of the night. At 8AM every morning, I had a team of 6 neurologists standing at the foot of my bed, discussing their plan for me for the day.
I had more MRIs completed, and an EMG. Let me tell you, an EMG sucks. They put little pads on different spots on your arm, hand, leg and foot, then they stick what amounts to a miniature cattle prod up to various points on your body where nerves are supposed to be. Then they test the speed of that electrical signal. It hurts like a motherfucker, and your leg is just bouncing across the bed, like you're keeping time to a song in your head. If that isn't enough, then they stick a two inch long wire into certain muscle groups to check for an electrical signal. Once the wire is in, you have to relax or flex a specific muscle. Then they move the wire around until they find the signal they're looking for, like it's an AM radio station that's broadcasting from your thigh.
Last Friday morning was exceptionally noteworthy. I had two gentlemen from physical therapy come in to work with me. They brought a pair of three pound dumbbells with them for me to exercise with. My upper body was so weak, and still is, that they had to exchange them for two pound weights because I couldn't lift the three pound weights over my head. Then they had me do leg raises while sitting on my bed. Once I lifted my leg to a particular height with either leg, I would get a jolt of electricity through my leg, and twitch.
They had me stand up and try to march in place. I started with my left. First left. Then right. Then left again. As I started to lift my right leg up for the second time, I started to shake. My whole body went into what I can only describe as a full body stutter. I couldn't talk. I couldn't move, other than to keep shaking. It lasted for more than 45 seconds. I have had tens of thousands of Tourette's tics over the last five years, and let me tell you, this was not a Tourette's tic. This was a seizure.
I told the neurologist 20 minutes later when he came in to see me. He said that it was impossible for me to have a seizure, simply because I did not pass out. I was conscious during the event. It was then that I started to get the feeling that Mayo wasn't going to be of much help to me.
A couple of hours later, a neurologist came in and told me that I was going to be released. They told me that I had no nerve damage, and, that I was being diagnosed with a "movement disorder". NO SHIT. They couldn't tell me what brought on said "movement disorder", but suggested that it may be attributed to recent stress. Keep in mind, I still can't walk. My upper body is still so weak, that I have to lay back and rest after reading the newspaper for five minutes or so. And the whole bladder/bowel thing? It's still a little sketchy. The neurologist, a condescending, mid twenty-something, holier than thou bitch, actually had the balls to suggest that I see my therapist (my psychologist) once a week to try to get my legs working again. She also is scheduling me for physical therapy three times a week, which I can't afford. What I don't understand is this: If this is a movement disorder, in the same spectrum as my Tourette's Syndrome, of what benefit would physical therapy be? Physical therapy can't fix my Tourette's. How can it fix this? It's not a problem with my muscles.
In the course of our conversation, the neurologist said, "You're fine as far as we can tell". I replied, "I can't fucking walk". She said, "Well, you can with a walker".
They gave up on me. I wasn't bleeding. I wasn't dieing. They did a series of blood work, an hour of MRIs, and an EMG. From the moment I walked in, they had originally thought I had a condition called Guillain-Barre Syndrome. When tests turned out that I didn't, they let me go. This is one of the most respected hospitals in the nation. People come here from all around the world specifically just to be treated at this facility because of their reputation. I would have rather gone back to the hospital I was originally at.
So, I'm home now. I still can't walk. I started having convulsions yesterday. I called MY neurologist yesterday for further instructions. He is on vacation until April 4th. His business partner may see me, or I may be sent to another hospital this week. He is really good about getting back to me, even when he is out of his office. He once returned my call from his cell phone when he was in the airport in Lubbock, Texas. I told you, he's a BAMF.
I would like to thank everyone for their kind words, both on the blog, and on Facebook. It's nice to know that so many of you are concerned, and you are all strangers. Thank you so much. You keep me going some days.
5 comments:
Keep pushing for answers. Squeaky wheel and everything like that. They'd prefer you go away than to have to keep trying to figure out why they can't figure it out. Push.
Jesus, Adam...I've got a whole slew of adjectives for you: scary and frustrating being right there at the top. I'm hoping you hear from your neurologist soon--you clearly didn't get anything good out of the Mayo Clinic.
Keep us posted.
How awful! I've been wondering off and on what was going on with you, so thank you for the update. I hope they start figuring it out soon. That all sounds very scary, especially when you don't really know why!
Adam- I have had two surgeries for Chiari I Malformation. For the most part the symptoms cleared right up. I still have some lingering problems and wanted a 2nd opinion. My neurosurgeon (also a BAMF) suggested I go to Duke (we are in the SE) and skip the Mayo Clinic. He said Mayo is basically a bunch of chiropractors who run a bunch of tests and say a bunch of stuff and have no real idea what's going on. Please feel free to email me if you have questions that I might be able to answer. It is frightening and distressing and depressing to not know what is going on. Good Luck.
I don't have very nice things to say about they Mayo Clinic. I have had two interactions with them. Both of them have been negative. My first experience was in May of 2009. I was referred there by a neurologist due to a "tic disorder". I was diagnosed by Mayo as having tardive dyskinesia. I was satisfied with the diagnosis, but after coming home, I did some research, and none of the descriptions or videos that I read/saw resembled anything that I was going through. I set up an appointment with my current neurologist, who saw me for 30 seconds and diagnosed me as having Tourette's Syndrome.
I spent a week at Mayo again in March. When I entered the ER, they immediately mentioned Guillain-Barre Syndrome as a possible diagnosis. Thing is, once they ruled that out, they didn't test me for anything else. My insurance company got billed over $100,000 for NOTHING.
I highly recommend NOT going to the Mayo Clinic, if possible.
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