I've spent nearly three hours inside an MRI this afternoon, with my neck and head clamped into place, so that I couldn't move. It was the longest and most stressful session I think I've had yet. The claustrophobia really got to me toward the end.
Since then, I've had a Vicodin and am spending the rest of the evening in my new recliner...whittling down my Netflix queue. I was hoping to spend some quality time with my family, but this disease had other plans for me.
Quickly looking at the images, it appears that I may have a number of small lesions on my brain. I also have a shocking number of herniations throughout my spine. If there are lesions, it means that I have MS.
The thought of MS is quite a blow, but it will be good to finally have a name to associate with how I've been feeling. With a recent dose of steroids, I'm feeling better now than I have since August of last year. You can probably tell, since I've written more this week than I have all year.
My neurologist appointment has been moved up from June 28th to June 11. Hopefully, we'll have some news then.
Showing posts with label Multiple Sclerosis. Show all posts
Showing posts with label Multiple Sclerosis. Show all posts
Tuesday, May 28, 2013
Sunday, May 26, 2013
I FEEL GREAT!!!....Damn.....
If you have been following this blog for any extended period of time, you'll know of the medical issues I've had in recent years. Functioning from day to day would be difficult enough, if I had just one of the many conditions that I am forced to deal with.
As a quick recap, in June 2009, I was diagnosed with Tourette's Syndrome. The following month, I was diagnosed with PTSD. I had taken short term disability from work, from early February of that year, until mid-July. When I came back, I lasted two days, before I was vomiting in the waste basket at my desk and crying in the bathroom stalls. Needless to say, I haven't worked a day since.
In March of 2011, I started developing a number of unusual symptoms. I won't go into details. But, if you're interested, you can read more about them here.
So, March of 2011, I was diagnosed with a Chiari Malformation and Type 2 Diabetes. A month later, I was diagnosed with a herniated disc at L5 S1. In June, I had a partial discectomy. In September, another partial discectomy and a spinal fusion. No change in symptoms.
In January of 2012, doctors discovered a massive benign cyst, resting against the pineal gland, in the center of my brain. It's inoperable, but everyone agrees that it shouldn't be causing any of the symptoms that I currently have.
In September of 2012, my allergist discovered that I have Sjogren's Syndrome, almost by accident. He thought that some of my symptoms could be due to a food allergy. I had been told before that I was allergic to gluten. After testing 87 different foods (and gluten), everything came back negative. I reacted worse to the saline, than on any of the allergens tested. On a whim, he ordered an auto-immune panel.
If you're unfamiliar with Sjogren's, it's an auto-immune disease that attacks the moisture and mucus producing glands in your body. The most common symptoms are dry eyes and a dry mouth. It can manifest a number of symptoms that mimic other diseases, like lupus or Multiple Sclerosis. Speaking for myself, I constantly have a dry mouth. For someone that doesn't smoke, I certainly have had my fair share of cottonmouth and pot lip. My nose gets so dry, that I have random nosebleeds throughout the day. Also, the wax in my ears has all but disappeared. I'm on medication right now to help me produce saliva.
Since maybe October or November of 2011, I have had increasing and worsening issues with pain and neuropathy. Occasionally, I'll have electric jolts jump through my body. At times, I have a sudden, sharp pain, as if someone had just amputated my hand or my leg. Lately, I have pain on the soles of my feet and on my fingertips, that feel like a quick deep paper cut. I have constant joint and muscle pain, often associated with lupus or a severe case of Sjogren's.
I also have an issue where, regardless of what I've done that day, my body shuts down at approximately 3PM every day. It's not a feeling of exhaustion. My brain literally starts shutting itself down. Within a matter of minutes, I stop thinking clearly. I start slurring my words. And, if I don't get to my bed, I'll just fall asleep wherever I'm sitting. Most days, I wake up not even remembering falling asleep.
I scheduled an appointment with my neurologist, because the pain has become unbearable. I do my best not to take any narcotics. I come from a long line of addicts and alcoholics. Last thing I need is to become hooked on opiates. In any event, I have been dealing with this long enough to know that my pain was neurological, and not rheumotological in nature.
My neurologist had finally received the test results from when I was originally hospitalized in March 2011. At that time, a spinal tap was done. Both to test for Multiple Sclerosis, and to complete a CT myleogram to get a clearer image of my spine. He said that the lab results showed extremely high protein levels in my spinal fluid. If he was to diagnose me, solely based on those lab results, he would say that I have Multiple Sclerosis. I have a full set of MRIs on Tuesday to check for lesions or demylination on the nerves in my spinal cord. In the meantime, he was going to start basic treatment AS IF I have Multiple Sclerosis. On Thursday morning, I was placed on a heavy dose of steroids. My Lyrica was doubled, to 300mg twice a day. And, I was placed on Clonodine. In addition to helping with Tourette's tics, Clonodine works well in connection with other nerve medications, like Lyrica, to reduce nerve pain.
The last three days are the best I have felt in close to six months. I haven't had that daily "crash". My pain, both joint and nerve pain, are virtually gone. I still have a little pain here and there, but it's nothing that a couple of ibuprofen can't handle. Occasionally, I'll still get lightheaded. I still have double vision from time to time. But, I don't have the brain fog or confusion like I used to. Honestly, I feel GREAT!
And...that's a problem.
It looks like I have MS. It makes sense. For years now, I've had every single symptom listed for the disease. As of yet, I haven't had any detectable lesions. Then again, 15-20% of those with Multiple Sclerosis have no lesions show on an MRI. Maybe, I'm part of that 15-20%.
It's refreshing to finally see the light at the end of this tunnel. I really believe that we're getting close to having a definitive answer. No more guessing. No more useless blood tests and MRIs. No more clueless doctors. I know what's wrong.
Holy shit. I know what's wrong. That's fucking scary. I've seen MS progression in other people. And, while everyone is different, I have an idea as to what to expect in the coming years. It's not going to be pretty. While medication and therapy will improve my quality of life, it's all downhill from here. It's really a bittersweet moment in my life.
I'm still trying to wrap my head around everything. This is something that, two years ago, every neurologist I spoke with said, "No. It's not possible.". I put the possibility of MS out of my head, and was able to focus my energy on those that were chronic, but not as debilitating. This is a difficult possibility to accept.
I really don't know where to go from here. I'm going to have to make a number of big changes in my life. We're living in the worst major metropolitan city in the nation for someone with MS. Needless to say, Nadia and I are going to have to make some important decisions in the near future.
At least I have an answer. It may not be the answer I've been looking for. But, in the end, it's better than not knowing at all.
As a quick recap, in June 2009, I was diagnosed with Tourette's Syndrome. The following month, I was diagnosed with PTSD. I had taken short term disability from work, from early February of that year, until mid-July. When I came back, I lasted two days, before I was vomiting in the waste basket at my desk and crying in the bathroom stalls. Needless to say, I haven't worked a day since.
In March of 2011, I started developing a number of unusual symptoms. I won't go into details. But, if you're interested, you can read more about them here.
So, March of 2011, I was diagnosed with a Chiari Malformation and Type 2 Diabetes. A month later, I was diagnosed with a herniated disc at L5 S1. In June, I had a partial discectomy. In September, another partial discectomy and a spinal fusion. No change in symptoms.
In January of 2012, doctors discovered a massive benign cyst, resting against the pineal gland, in the center of my brain. It's inoperable, but everyone agrees that it shouldn't be causing any of the symptoms that I currently have.
In September of 2012, my allergist discovered that I have Sjogren's Syndrome, almost by accident. He thought that some of my symptoms could be due to a food allergy. I had been told before that I was allergic to gluten. After testing 87 different foods (and gluten), everything came back negative. I reacted worse to the saline, than on any of the allergens tested. On a whim, he ordered an auto-immune panel.
If you're unfamiliar with Sjogren's, it's an auto-immune disease that attacks the moisture and mucus producing glands in your body. The most common symptoms are dry eyes and a dry mouth. It can manifest a number of symptoms that mimic other diseases, like lupus or Multiple Sclerosis. Speaking for myself, I constantly have a dry mouth. For someone that doesn't smoke, I certainly have had my fair share of cottonmouth and pot lip. My nose gets so dry, that I have random nosebleeds throughout the day. Also, the wax in my ears has all but disappeared. I'm on medication right now to help me produce saliva.
Since maybe October or November of 2011, I have had increasing and worsening issues with pain and neuropathy. Occasionally, I'll have electric jolts jump through my body. At times, I have a sudden, sharp pain, as if someone had just amputated my hand or my leg. Lately, I have pain on the soles of my feet and on my fingertips, that feel like a quick deep paper cut. I have constant joint and muscle pain, often associated with lupus or a severe case of Sjogren's.
I also have an issue where, regardless of what I've done that day, my body shuts down at approximately 3PM every day. It's not a feeling of exhaustion. My brain literally starts shutting itself down. Within a matter of minutes, I stop thinking clearly. I start slurring my words. And, if I don't get to my bed, I'll just fall asleep wherever I'm sitting. Most days, I wake up not even remembering falling asleep.
I scheduled an appointment with my neurologist, because the pain has become unbearable. I do my best not to take any narcotics. I come from a long line of addicts and alcoholics. Last thing I need is to become hooked on opiates. In any event, I have been dealing with this long enough to know that my pain was neurological, and not rheumotological in nature.
My neurologist had finally received the test results from when I was originally hospitalized in March 2011. At that time, a spinal tap was done. Both to test for Multiple Sclerosis, and to complete a CT myleogram to get a clearer image of my spine. He said that the lab results showed extremely high protein levels in my spinal fluid. If he was to diagnose me, solely based on those lab results, he would say that I have Multiple Sclerosis. I have a full set of MRIs on Tuesday to check for lesions or demylination on the nerves in my spinal cord. In the meantime, he was going to start basic treatment AS IF I have Multiple Sclerosis. On Thursday morning, I was placed on a heavy dose of steroids. My Lyrica was doubled, to 300mg twice a day. And, I was placed on Clonodine. In addition to helping with Tourette's tics, Clonodine works well in connection with other nerve medications, like Lyrica, to reduce nerve pain.
The last three days are the best I have felt in close to six months. I haven't had that daily "crash". My pain, both joint and nerve pain, are virtually gone. I still have a little pain here and there, but it's nothing that a couple of ibuprofen can't handle. Occasionally, I'll still get lightheaded. I still have double vision from time to time. But, I don't have the brain fog or confusion like I used to. Honestly, I feel GREAT!
And...that's a problem.
It looks like I have MS. It makes sense. For years now, I've had every single symptom listed for the disease. As of yet, I haven't had any detectable lesions. Then again, 15-20% of those with Multiple Sclerosis have no lesions show on an MRI. Maybe, I'm part of that 15-20%.
It's refreshing to finally see the light at the end of this tunnel. I really believe that we're getting close to having a definitive answer. No more guessing. No more useless blood tests and MRIs. No more clueless doctors. I know what's wrong.
Holy shit. I know what's wrong. That's fucking scary. I've seen MS progression in other people. And, while everyone is different, I have an idea as to what to expect in the coming years. It's not going to be pretty. While medication and therapy will improve my quality of life, it's all downhill from here. It's really a bittersweet moment in my life.
I'm still trying to wrap my head around everything. This is something that, two years ago, every neurologist I spoke with said, "No. It's not possible.". I put the possibility of MS out of my head, and was able to focus my energy on those that were chronic, but not as debilitating. This is a difficult possibility to accept.
I really don't know where to go from here. I'm going to have to make a number of big changes in my life. We're living in the worst major metropolitan city in the nation for someone with MS. Needless to say, Nadia and I are going to have to make some important decisions in the near future.
At least I have an answer. It may not be the answer I've been looking for. But, in the end, it's better than not knowing at all.
Tuesday, March 22, 2011
An Update On My Health aka "It's A Long Story"
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.
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