Let me begin by saying how much I respect and empathize with this horrible battle that each of you are going through. None of you deserves it, and I know there is little I can say that will help, but my heart is with each of you, for whatever it is worth. I have not been diagnosed, but it is looking more and more like I am headed in that direction very quickly. I am not sure, but it looks like tomorrow (Monday) may result in a diagnosis of ALS (or in the family of disorders). I have already read all of the sticky posts several times, and you will notice I am not asking for a diagnosis. On the other hand, I have questions about PFT results and if anyone has any thoughts.
I am already clinically diagnosed as nuts (I have combat related PTSD), so anxiety and depression have been a part of my life for quite some time. That being said, although I would love to chalk my latest symptoms up to anxiety, that just does not seem very likely at this point. Although there certainly could be (and hopefully will be) something else that has been missed, I don't think that is the case. Unfortunately, despite trying to explore everything imaginable, it is looking like I might be joining the club. Heaven knows, it is the last thing I want, but I am hopeful the support here will make things a little easier through the process, or if things go south. If nothing else, I would love to offer my support to those of you who struggle with this nightmare.
As a brief summary, I have spent the past two moths with a hopeful diagnosis of Myasthenia Gravis. Unfortunately, although all of the signs were looking good on that front, a neuromuscular specialist unequivocally confirmed this week that I do not have MG. Unfortunately, he would not directly answer my questions regarding if he saw indications of another neuromuscular disorder or if he had any thoughts regarding other specialty fields I should look at. Instead, he told me I will need to discuss things with my local neurologist at the follow-up appointment, which is tomorrow (Monday).
I will warn you in advance, my post is rather long. I am frustrated, angry, scared, sad, happy, impatient, compassionate, lost, hopeful, helpless ... I think you get the point. All of those emotions at one time; I am pretty sure most of you can relate. Since I know what a struggle it must be for many of you to read something so long, I will ask my question(s) first. If you want to read more about my recent events, you can continue to read, but by no means am I asking for you to read through my recent story. The information is there if you wish to read on.
So to get to my specific question first: a few days before seeing the neuromuscular specialist, I saw a pulmonologist. He said I had definitive indications of a neuromuscular disorder, and he felt they were consistent with the Myasthenia Gravis hypothesis. With that, he said they were not specific to MG, and could correlate with several other neuromuscular disorders as well. As he explained it, my lung capacity was well above average for my age, but extremely low in terms muscle strength. He said that was consistent with my otherwise very healthy physical condition, and that I was not technically short of breath. Rather, he said it feels like shortness of breath from my perspective because I must work much harder to get the normal level of necessary oxygen and to expel the normal level of carbon dioxide.
I will spare you with all of the numbers, but a few specific examples were: FVC1/FVC = 108%(lung capacity); ERV = 41% and MIP = 40% (muscle strength); TLC 90% (strong lung capacity reduced by terrible muscle strength). So with that, he did not recommend CPAP, BiPAP, etc. for the time being. I know many of you are quite experienced with PFT issues, and I would like some thoughts. Breathing "feels" terribly painful and challenging; like a pro football player is bear hugging my chest. It scares the heck out of me, and I would love to hear some of your thoughts on the matter. I thank you all in advance for lending me your precious time and experience.
FOR THOSE WHO WISH TO READ ON:
Over the past couple of months, I have been to the ER three times and checked into the hospital one time. Bear in mind that prior to then, I had been to the ER maybe five or six times in my life, for serious issues like bone fractures, concussions, etc. I had been to the hospital as an inpatient or outpatient approximately the same number of times; with each one being for a fairly routine procedure of one type or another. I traditionally have tended to avoid doctors, even when I probably should seen then on several occasions.
With that said, over the past few months I have been looked at by many physicians, including: 1 primary care physician, 3 ER physicians, 1 ophthalmologist, 2 pulmonologists, 1 cardiologist, 2 general neurologists, 1 pain management specialists, 2 anesthesiologists, 1 neuromuscular specialist, 1 orthopedic surgeon, several radiologists (indirectly), 1 psychiatrist, and 1 neuromuscular specialist. I might have missed a few, but I think you get the idea. Each of these specialists looked at me from their particular perspective, and several ran countless tests.
At the end of the day, the two local neurologists have been less-than-professional, but everyone else has been quite helpful. Without failure, (with the exception of those two neurologists), every single physician said I have clear signs and symptoms of a neuromuscular problem. In several cases, their opinions were even backed up by specific empirical tests to support their opinion.
It is quite ironic that every singe physician identified neuromuscular issues, yet the two neurologists seem "confused". They are the only two in our small town, so there are not a lot of choices. From my interactions with them, I gather they might very well be prepared to diagnose carpal tunnel syndrome (and other similar day-to-day stuff), but neuromuscular issues appear to be out of their league. Fortunately, after enough persistence, the second neurologist did refer me to a neuromuscular specialist; probably just to get rid of me for a while.
As far as testing, the two neurologists both ran a NCS and EMG. The second one ran a RNS as well. All were "negative", which should be a great relief, but it was quite obvious after just some basic research that neither of them spent nearly the correct amount of time (a couple minutes total) or even ran the tests correctly. If nothing else, they both completely missed my rather common sciatica issues which have already been clearly documented as being caused by the spondylolisthesis and severe herniation at my L5-S1. I could go on for days about all of the things they did incorrectly, but one of the most obvious was that they never tested any of the areas of my complaints; specifically my bulbar and proximal muscles.
With that said, both of them very quickly came to the opinion that my issues were obvious conversion disorders, anxiety, depression, etc. To put it frankly, they might be dead-on correct (I did tell them both upfront that I have been in treatment for PTSD for several years after all), or they might deserve to have their licenses pulled. As I will explain, there isn't going to be much middle ground for these two gentlemen. They are either quite competent in diagnosing me as a complete "lunatic", or they are true embarrassments to their profession. As I will explain, we will know the answer very soon.
As a brief summary, here is a list of the key findings to date by various labs and physicians, prior to meeting with the neuromuscular specialist, with the test results and clinical opinions of the neurologists excluded.
- Positive clinical mild ptosis, binocular diplopia, and exotropia
- Positive clinical dysphagia and dysarthria
- Positive clinical extremity weakness (proximal greater than distal)
- Positive clinical indications of chest pain and shallow breathing
- Inconsistent Hoffman, Babinski, deep tendon reflexes, etc.
- Inconsistent cranial nerve responses
- Rapid changes in pulse and blood pressure (with very mild exertion)
- Mildly reduced oxygen levels, with mild fluxuations (all in the 90s)
- No fever in a clinical setting or at home over the course of months
- Negative acetylcholine antibody (blocking, modulating, and binding)
- Negative striated muscle antibody
- Negative VGCC antibody
- Negative TSH and T4 (thyroid labs)
- Negative troponin quantitative (cardiac labs)
- Negative cardiac panel
- Negative CBC with differential (x2)
- Negative CMP (x2)
- Pending MuSK antibody (the lab forgot to order this one the first time)
- Negative chest x-ray
- Negative chest CT (thymus, thyroid, heart, lungs, liver, etc.)
- Negative brain CT (x2)
- Negative brain MRI (except minor sinusitis and partial empty sella)
- Negative cervical MRI (except post-op ACDF and degenerative DD)
- Negative thoracic MRI (except degenerative disc disease)
- Negative lumbar MRI (except L4-L5 and L5-S1 herniated discs)
- Positive lumbar flexion / extension x-rays (L5-S1 spondylolisthesis)
- Negative EKG (x2)
- Negative stress test EKG
- Negative Echocardiogram (except very minor mitral valve issue)
- Pending angiogram of mitral valve (just in case; per cardiologist)
- Probably a few clinical signs and symptoms I missed
- Positive PFT (for neuromuscular disorder as discussed in detail above)
For those of you who have been diagnosed or dealing with this for a considerable time, I imagine you noticed I managed to get a lot of testing completed in a short period of time. That only happened because, I took my health into my own hands. I contacted specialists on my own, and circumvented the referral system. Fortunately for me, my insurance does not require specialist referrals, although most specialists seem to require one anyway.
Bypassing the beurocracy was not easy, but the trips to the ER, the hospital stay, the severity of my symptoms, a record of the specialists I had already seen, and a pending referral to a neuromuscular specialist at a major teaching hospital helped significantly in the process of convincing them to see me (and to do so urgently). Once each of the specialists saw me in person, they instantly knew something was seriously wrong with me, and they immediately scheduled me for appropriate testing in their specialty area. I can't emphasize enough that this was only appropriate and feasible because it was obvious that I am quite ill, which is just not normal for a 42 year old.
So with a bit of background, I fast forward to the Friday before last (8 days ago). After a two hour drive, numerous tests and labs the four days prior, CT contrast dye the day prior, and a night of pain-related insomnia, I arrived for the appointment with the neuromuscular specialist. With all of those factors together, I was extremely weak and my symptoms were the worst they had ever been outside of my home. Fortunately, the wait to see the doctor was very short. He was friendly enough, but did not seem particularly concerned as I answered some of his questions. He seemed to be of the opinion that my symptoms were psychological, and I suspected that was possibly because he had been told as much in the referral from my local neurologist.
With that said, his demeanor changed very quickly within the first few seconds of actually examining me. He did a fairly rapid, but very thorough clinical examination, which was something the other two neurologists had never done at all. In addition to the typical MG tests (strength, balance, optical, etc., he spent a long time looking at my tongue). Before he was even one or two minutes into the exam, he told his medical assistant to set me for the first available SFEMG exam. She came back and said she had scheduled me for two weeks out, and he told her he had put it incorrectly, that he meant literally the next day he would be in the lab. Shortly later, she returned with an appointment for the upcoming Tuesday.
Although he did not say it directly, it was rather apparent that he was seriously concerned about my health. What he did say was that he suspected I did in fact had Myasthenia Gravis, and that we would know for sure after the SFEMG. He also let me know that unlike a normal EMG, the results would not be immediate, but he would call me by the end of the day or the following morning. I was appreciative that he told me that in advance, and that he was not thinking in terms of weeks.
Being completely exhausted from the full week, I spent the next three days in bed. That is how I am ever day these days (except for medical appointments), but I was even more drained than normal, and I slept almost straight through the first day or two. After three days of solid rest, I actually felt relatively good when the day of the SFEMG arrived. I discussed with him how much I had improved and that he had seen me on one of my worst days, and on one of my best days. He did not make any comment but proceeded to the SFEMG. He said he would only be doing my face on one side. I asked about my proximal muscles, tongue, throat, etc., but he said the face would be accurate for detecting MG with the test he was doing.
The test lasted around half an hour. I asked him how things looked, and he said he would have to go through the results thoroughly, but with a cursory view of a few of the shots, things looked normal for my age in terms of MG. I was a bit saddened because I really wanted a diagnosis so I could rule out the other possibilities and start treatment, but he was quite professional and I understood.
As promised, he called me even before I had made it all the way home. He said, "You do not have MG". I asked him is he was sure and he said he was. I then asked him if there were any indications of other neuromuscular issues, or if he had any suggestions for other specialists I should look into (a rheumatologist for example). He said, "I tested you specifically for MG per the referral, and you were negative for MG. You will need to follow up with your neurologist for more information regarding where to go from here". I asked again about any other specialists, and he gave me the same answer. He was quite professional, but it was clear he had an opinion, but would not share it with me.
So as it stands now, I am hopeful that he made a mistake (and that my MuSK AB test will come back positive for MG), or that he too thinks my symptoms are all psychosomatic. Unfortunately, I suspect that is not what he thinks. I suspect he did identify something in the SFEMG which indicated another type of neuromuscular disorder (possibly reinnervation). To that end, it is my suspicion that he did not want to panic me the first time he saw me, but he was hoping he would find MG, but he suspected otherwise from the beginning. Needless to say, he is not just a neuromuscular specialist, but he has specific emphasis in two areas: MG and ALS.
I spoke to my local neurologist's nurse twice this week; once by telephone on Wednesday, and once in person on Friday (since I had a cardiology appointment in the same building). She said he still had not reviewed the notes from the neuromuscular specialist, so I would have to wait for my appointment. I told her I already knew the results were negative for MG, and I suspected I was either nuts or had ALS (or one of the neuromuscular disorders in the ALS family).
I also told her I knew it was protocol for two neurologists to separately diagnose ALS, and to always report the results face-to-face. She said she had not looked at the results when they came in (oh sure!), but she said I was definitely not nuts. Reluctantly, after I persisted long enough, she finally gave me a copy of the report from my original consultation. She also readily agreed to move my appointment up to the next business day; Monday (tomorrow).
When I got home, I reviewed his original report, and he had in fact indicated he thought my symptoms were psychological. I was fine with that, but he then made a statement implying I was malingering. He did not say it directly, but it was clearly the intent behind his statement. So needless to say, tomorrow is going to be one heck of a day for this "doctor." He is either going to have to tell a half-psychotic nutcase that he is in fact a nutcase / malingerer, OR he his going to have to tell a patient whom he previously wrote up as a nutcase / malingerer the worst news a neurologist can ever tell someone. Needless to say, this 32 year old idiot has put himself into quite a predicament. I have to wonder if he will go home sick before my appointment.
If you are still reading at this point, you can obviously understand how utterly frustrated and angry I am. I am doing my best to keep my cool, but it is really quite difficult. For the time being, I'm actually more angry with these two neurologists than I am scared about the results. Depending on what happens tomorrow, my emotions may shift dramatically, but for now the anger is stronger than the fear (not that it isn't there). I have been watching this forum for quite some time (since I have had this ugly feeling from the start), but avoided joining until now because I really wanted for it to be something else. I pray for each of you every day, and I wish you physical, mental, and emotional strength.
Scott
I am already clinically diagnosed as nuts (I have combat related PTSD), so anxiety and depression have been a part of my life for quite some time. That being said, although I would love to chalk my latest symptoms up to anxiety, that just does not seem very likely at this point. Although there certainly could be (and hopefully will be) something else that has been missed, I don't think that is the case. Unfortunately, despite trying to explore everything imaginable, it is looking like I might be joining the club. Heaven knows, it is the last thing I want, but I am hopeful the support here will make things a little easier through the process, or if things go south. If nothing else, I would love to offer my support to those of you who struggle with this nightmare.
As a brief summary, I have spent the past two moths with a hopeful diagnosis of Myasthenia Gravis. Unfortunately, although all of the signs were looking good on that front, a neuromuscular specialist unequivocally confirmed this week that I do not have MG. Unfortunately, he would not directly answer my questions regarding if he saw indications of another neuromuscular disorder or if he had any thoughts regarding other specialty fields I should look at. Instead, he told me I will need to discuss things with my local neurologist at the follow-up appointment, which is tomorrow (Monday).
I will warn you in advance, my post is rather long. I am frustrated, angry, scared, sad, happy, impatient, compassionate, lost, hopeful, helpless ... I think you get the point. All of those emotions at one time; I am pretty sure most of you can relate. Since I know what a struggle it must be for many of you to read something so long, I will ask my question(s) first. If you want to read more about my recent events, you can continue to read, but by no means am I asking for you to read through my recent story. The information is there if you wish to read on.
So to get to my specific question first: a few days before seeing the neuromuscular specialist, I saw a pulmonologist. He said I had definitive indications of a neuromuscular disorder, and he felt they were consistent with the Myasthenia Gravis hypothesis. With that, he said they were not specific to MG, and could correlate with several other neuromuscular disorders as well. As he explained it, my lung capacity was well above average for my age, but extremely low in terms muscle strength. He said that was consistent with my otherwise very healthy physical condition, and that I was not technically short of breath. Rather, he said it feels like shortness of breath from my perspective because I must work much harder to get the normal level of necessary oxygen and to expel the normal level of carbon dioxide.
I will spare you with all of the numbers, but a few specific examples were: FVC1/FVC = 108%(lung capacity); ERV = 41% and MIP = 40% (muscle strength); TLC 90% (strong lung capacity reduced by terrible muscle strength). So with that, he did not recommend CPAP, BiPAP, etc. for the time being. I know many of you are quite experienced with PFT issues, and I would like some thoughts. Breathing "feels" terribly painful and challenging; like a pro football player is bear hugging my chest. It scares the heck out of me, and I would love to hear some of your thoughts on the matter. I thank you all in advance for lending me your precious time and experience.
FOR THOSE WHO WISH TO READ ON:
Over the past couple of months, I have been to the ER three times and checked into the hospital one time. Bear in mind that prior to then, I had been to the ER maybe five or six times in my life, for serious issues like bone fractures, concussions, etc. I had been to the hospital as an inpatient or outpatient approximately the same number of times; with each one being for a fairly routine procedure of one type or another. I traditionally have tended to avoid doctors, even when I probably should seen then on several occasions.
With that said, over the past few months I have been looked at by many physicians, including: 1 primary care physician, 3 ER physicians, 1 ophthalmologist, 2 pulmonologists, 1 cardiologist, 2 general neurologists, 1 pain management specialists, 2 anesthesiologists, 1 neuromuscular specialist, 1 orthopedic surgeon, several radiologists (indirectly), 1 psychiatrist, and 1 neuromuscular specialist. I might have missed a few, but I think you get the idea. Each of these specialists looked at me from their particular perspective, and several ran countless tests.
At the end of the day, the two local neurologists have been less-than-professional, but everyone else has been quite helpful. Without failure, (with the exception of those two neurologists), every single physician said I have clear signs and symptoms of a neuromuscular problem. In several cases, their opinions were even backed up by specific empirical tests to support their opinion.
It is quite ironic that every singe physician identified neuromuscular issues, yet the two neurologists seem "confused". They are the only two in our small town, so there are not a lot of choices. From my interactions with them, I gather they might very well be prepared to diagnose carpal tunnel syndrome (and other similar day-to-day stuff), but neuromuscular issues appear to be out of their league. Fortunately, after enough persistence, the second neurologist did refer me to a neuromuscular specialist; probably just to get rid of me for a while.
As far as testing, the two neurologists both ran a NCS and EMG. The second one ran a RNS as well. All were "negative", which should be a great relief, but it was quite obvious after just some basic research that neither of them spent nearly the correct amount of time (a couple minutes total) or even ran the tests correctly. If nothing else, they both completely missed my rather common sciatica issues which have already been clearly documented as being caused by the spondylolisthesis and severe herniation at my L5-S1. I could go on for days about all of the things they did incorrectly, but one of the most obvious was that they never tested any of the areas of my complaints; specifically my bulbar and proximal muscles.
With that said, both of them very quickly came to the opinion that my issues were obvious conversion disorders, anxiety, depression, etc. To put it frankly, they might be dead-on correct (I did tell them both upfront that I have been in treatment for PTSD for several years after all), or they might deserve to have their licenses pulled. As I will explain, there isn't going to be much middle ground for these two gentlemen. They are either quite competent in diagnosing me as a complete "lunatic", or they are true embarrassments to their profession. As I will explain, we will know the answer very soon.
As a brief summary, here is a list of the key findings to date by various labs and physicians, prior to meeting with the neuromuscular specialist, with the test results and clinical opinions of the neurologists excluded.
- Positive clinical mild ptosis, binocular diplopia, and exotropia
- Positive clinical dysphagia and dysarthria
- Positive clinical extremity weakness (proximal greater than distal)
- Positive clinical indications of chest pain and shallow breathing
- Inconsistent Hoffman, Babinski, deep tendon reflexes, etc.
- Inconsistent cranial nerve responses
- Rapid changes in pulse and blood pressure (with very mild exertion)
- Mildly reduced oxygen levels, with mild fluxuations (all in the 90s)
- No fever in a clinical setting or at home over the course of months
- Negative acetylcholine antibody (blocking, modulating, and binding)
- Negative striated muscle antibody
- Negative VGCC antibody
- Negative TSH and T4 (thyroid labs)
- Negative troponin quantitative (cardiac labs)
- Negative cardiac panel
- Negative CBC with differential (x2)
- Negative CMP (x2)
- Pending MuSK antibody (the lab forgot to order this one the first time)
- Negative chest x-ray
- Negative chest CT (thymus, thyroid, heart, lungs, liver, etc.)
- Negative brain CT (x2)
- Negative brain MRI (except minor sinusitis and partial empty sella)
- Negative cervical MRI (except post-op ACDF and degenerative DD)
- Negative thoracic MRI (except degenerative disc disease)
- Negative lumbar MRI (except L4-L5 and L5-S1 herniated discs)
- Positive lumbar flexion / extension x-rays (L5-S1 spondylolisthesis)
- Negative EKG (x2)
- Negative stress test EKG
- Negative Echocardiogram (except very minor mitral valve issue)
- Pending angiogram of mitral valve (just in case; per cardiologist)
- Probably a few clinical signs and symptoms I missed
- Positive PFT (for neuromuscular disorder as discussed in detail above)
For those of you who have been diagnosed or dealing with this for a considerable time, I imagine you noticed I managed to get a lot of testing completed in a short period of time. That only happened because, I took my health into my own hands. I contacted specialists on my own, and circumvented the referral system. Fortunately for me, my insurance does not require specialist referrals, although most specialists seem to require one anyway.
Bypassing the beurocracy was not easy, but the trips to the ER, the hospital stay, the severity of my symptoms, a record of the specialists I had already seen, and a pending referral to a neuromuscular specialist at a major teaching hospital helped significantly in the process of convincing them to see me (and to do so urgently). Once each of the specialists saw me in person, they instantly knew something was seriously wrong with me, and they immediately scheduled me for appropriate testing in their specialty area. I can't emphasize enough that this was only appropriate and feasible because it was obvious that I am quite ill, which is just not normal for a 42 year old.
So with a bit of background, I fast forward to the Friday before last (8 days ago). After a two hour drive, numerous tests and labs the four days prior, CT contrast dye the day prior, and a night of pain-related insomnia, I arrived for the appointment with the neuromuscular specialist. With all of those factors together, I was extremely weak and my symptoms were the worst they had ever been outside of my home. Fortunately, the wait to see the doctor was very short. He was friendly enough, but did not seem particularly concerned as I answered some of his questions. He seemed to be of the opinion that my symptoms were psychological, and I suspected that was possibly because he had been told as much in the referral from my local neurologist.
With that said, his demeanor changed very quickly within the first few seconds of actually examining me. He did a fairly rapid, but very thorough clinical examination, which was something the other two neurologists had never done at all. In addition to the typical MG tests (strength, balance, optical, etc., he spent a long time looking at my tongue). Before he was even one or two minutes into the exam, he told his medical assistant to set me for the first available SFEMG exam. She came back and said she had scheduled me for two weeks out, and he told her he had put it incorrectly, that he meant literally the next day he would be in the lab. Shortly later, she returned with an appointment for the upcoming Tuesday.
Although he did not say it directly, it was rather apparent that he was seriously concerned about my health. What he did say was that he suspected I did in fact had Myasthenia Gravis, and that we would know for sure after the SFEMG. He also let me know that unlike a normal EMG, the results would not be immediate, but he would call me by the end of the day or the following morning. I was appreciative that he told me that in advance, and that he was not thinking in terms of weeks.
Being completely exhausted from the full week, I spent the next three days in bed. That is how I am ever day these days (except for medical appointments), but I was even more drained than normal, and I slept almost straight through the first day or two. After three days of solid rest, I actually felt relatively good when the day of the SFEMG arrived. I discussed with him how much I had improved and that he had seen me on one of my worst days, and on one of my best days. He did not make any comment but proceeded to the SFEMG. He said he would only be doing my face on one side. I asked about my proximal muscles, tongue, throat, etc., but he said the face would be accurate for detecting MG with the test he was doing.
The test lasted around half an hour. I asked him how things looked, and he said he would have to go through the results thoroughly, but with a cursory view of a few of the shots, things looked normal for my age in terms of MG. I was a bit saddened because I really wanted a diagnosis so I could rule out the other possibilities and start treatment, but he was quite professional and I understood.
As promised, he called me even before I had made it all the way home. He said, "You do not have MG". I asked him is he was sure and he said he was. I then asked him if there were any indications of other neuromuscular issues, or if he had any suggestions for other specialists I should look into (a rheumatologist for example). He said, "I tested you specifically for MG per the referral, and you were negative for MG. You will need to follow up with your neurologist for more information regarding where to go from here". I asked again about any other specialists, and he gave me the same answer. He was quite professional, but it was clear he had an opinion, but would not share it with me.
So as it stands now, I am hopeful that he made a mistake (and that my MuSK AB test will come back positive for MG), or that he too thinks my symptoms are all psychosomatic. Unfortunately, I suspect that is not what he thinks. I suspect he did identify something in the SFEMG which indicated another type of neuromuscular disorder (possibly reinnervation). To that end, it is my suspicion that he did not want to panic me the first time he saw me, but he was hoping he would find MG, but he suspected otherwise from the beginning. Needless to say, he is not just a neuromuscular specialist, but he has specific emphasis in two areas: MG and ALS.
I spoke to my local neurologist's nurse twice this week; once by telephone on Wednesday, and once in person on Friday (since I had a cardiology appointment in the same building). She said he still had not reviewed the notes from the neuromuscular specialist, so I would have to wait for my appointment. I told her I already knew the results were negative for MG, and I suspected I was either nuts or had ALS (or one of the neuromuscular disorders in the ALS family).
I also told her I knew it was protocol for two neurologists to separately diagnose ALS, and to always report the results face-to-face. She said she had not looked at the results when they came in (oh sure!), but she said I was definitely not nuts. Reluctantly, after I persisted long enough, she finally gave me a copy of the report from my original consultation. She also readily agreed to move my appointment up to the next business day; Monday (tomorrow).
When I got home, I reviewed his original report, and he had in fact indicated he thought my symptoms were psychological. I was fine with that, but he then made a statement implying I was malingering. He did not say it directly, but it was clearly the intent behind his statement. So needless to say, tomorrow is going to be one heck of a day for this "doctor." He is either going to have to tell a half-psychotic nutcase that he is in fact a nutcase / malingerer, OR he his going to have to tell a patient whom he previously wrote up as a nutcase / malingerer the worst news a neurologist can ever tell someone. Needless to say, this 32 year old idiot has put himself into quite a predicament. I have to wonder if he will go home sick before my appointment.
If you are still reading at this point, you can obviously understand how utterly frustrated and angry I am. I am doing my best to keep my cool, but it is really quite difficult. For the time being, I'm actually more angry with these two neurologists than I am scared about the results. Depending on what happens tomorrow, my emotions may shift dramatically, but for now the anger is stronger than the fear (not that it isn't there). I have been watching this forum for quite some time (since I have had this ugly feeling from the start), but avoided joining until now because I really wanted for it to be something else. I pray for each of you every day, and I wish you physical, mental, and emotional strength.
Scott
