matthewdbardsley
Member
- Joined
- Jul 16, 2009
- Messages
- 12
- Reason
- Lost a loved one
- Diagnosis
- 09/2009
- Country
- CA
- State
- AB
- City
- Calgary
Hi Everyone,
I have been creeping this forum for nearly a month now, reading through all the threads throughout the site trying to learn as much as I can about ALS/MND. My father is currently in the intensive care unit, being supported by a ventilator. We have been hopping back and forth between a diagnosis of ALS and MG. We have been through five different neurologists and have been getting differing opinions throughout his 2 month stay in the ICU.
I will give some historical details to provide a clearer picture... Around December 2008 he began having difficulty swallowing and speaking. The symptoms were manageable and tended to come and go. Things remained like this for a while and I didn't really think much of it. In April 2009 we went on a trip to Toronto/Montreal and i noticed had almost completely lost the ability to hold his head up, and his speaking had become much worse. He began complaining of seeing double and having other vision problems. He used to be an avid "city walker" and loved walking for many KMs throughout different cities we were visiting. This trip he wasn't able to go more than 2 city blocks without having to get into a taxi and head back to the hotel. I had noticed that these symptoms were improving with rest. Things began to rapidly deteriorate about a week after returning from vacation. To hold his head up he had to have it propped up with both hands. His speech had become extremely difficult to understand... It seemed to be one long slur most of the time. During all of this we were waiting for a neurology appt. which had come with an 8 week waiting period. By mid-may, he was no longer sleeping through the night and could barely eat or speak. One morning, he was almost totally unable to make it up a flight of stairs and became increasingly confused. He had begun hallucinating and was appearing to have problems breathing. We headed to the hospital and he was admitted immediately as he was in the midst of respiratory failure.
We were faced with the difficult choice of intubation... We were told that if ALS was what he might have, then intubation would have been permanent. But if it was MG or another treatable condition we could expect to see the breathing tube removed. We had about 25 minutes to make this choice before it would have been too late...
After being intubated he was almost immediately started on Mestinon as well as prednisone to help his respiratory recovery, and over the course of about 3 and a half weeks was given larger and larger doses. We immediately saw imrovements. He could hold his head up again, and after the intubation was brought to a tracheotomy we noticed that his speech has begun returning as well. He eventually was able to speak with little slurring and more air behind his words when he had his "speak valve" on. His swallowing abilities also seemed to return (we were in the midst of testing them with different fluids and foods). Four different neuros consulted all were of the opinion that it was a myasthenic crisis which brought us into the ICU and that the subtype of myasthenia he had often required 100+ day stays in an ICU setting to wean from the ventilator and make a recovery.
Things seemed to be improving at a slow but noticeable pace.
On Monday, a new doctor began ICU rotation and said that since admission, little progress has been made. He has totally stopped the mestinon and brought in a new neurologist who has said that MG is on the bottom of his list of possible diagnoses and that ALS is more likely. Today, 2 days after the last dose of mestinon, his speech is again very difficult to understand and he is again slumped over unable to hold up his head and is again having a lot of trouble breathing. Blood samples sent out showed negative for both of the possible tests for MG. We had initially been told that there is a percentage of MG patients who show negative to both of these tests.
Upon admission to the hospital, my Dad was almost immobile. He couldnt go more than 10 or 20 meters without getting absolutely winded and having to sit down for about 20 minutes to recover. Throughout his stay in ICU he has been having daily physiotherapy and has apparently made great progress. He started out 9 days after being admitted being able to march 15 or 20 steps on the spot before having to get back into his bed for the day. Friday (nearly 2 months later), he was able to ride an exercise bike in the rehab center of the hospital for almost 13 minutes, as well as taking two seperate 200meter walks. Also, when we were admitted he was obviously on life support 24/7. Now his trach. is taking in "room air" and he is breathing without support for 16 hrs a day, being rested at night back on the ventilator on minimal settings.
I am getting so many different answers from so many different doctors. Some have actually straight up said "the only thing i can completely rule out is ALS" and now I am hearing that it is actually the likely diagnosis.
My main questions are: Is it possible for a recovery like i have described to occur if it was ALS? The current DR says that because of how bad my Dad came in, what we may be seeing is just the results of some extra fluid and oxygen. My understanding of ALS was that it was impossible to make improvements... I would have thought that once on the ventilator he would be unable to wean off to 16 hrs a day. It had seemed to me, and many other nurses and Drs that he was, albeit extremely slowly, getting stronger and better. Do ALS patients experience this sort of improvement? Does Mestinon produce lasting, significant improvement in ALS patients? No one can give me any sort of honest, clear answer at the hospital.
AM I being unrealistic? Am I in denial? I am so confused and exhausted. I know that I am not the patient here, but the course of this all has really drained me. The ups and downs of the ICU are taking a toll. I hope that I can get some answers soon.
Thank you in advance for any and all input you can give me. I think it is so amazing that so many of you seem to be able to keep a positive outlook throughout this stressful, oftentimes discouraging journey.
Matthew
I have been creeping this forum for nearly a month now, reading through all the threads throughout the site trying to learn as much as I can about ALS/MND. My father is currently in the intensive care unit, being supported by a ventilator. We have been hopping back and forth between a diagnosis of ALS and MG. We have been through five different neurologists and have been getting differing opinions throughout his 2 month stay in the ICU.
I will give some historical details to provide a clearer picture... Around December 2008 he began having difficulty swallowing and speaking. The symptoms were manageable and tended to come and go. Things remained like this for a while and I didn't really think much of it. In April 2009 we went on a trip to Toronto/Montreal and i noticed had almost completely lost the ability to hold his head up, and his speaking had become much worse. He began complaining of seeing double and having other vision problems. He used to be an avid "city walker" and loved walking for many KMs throughout different cities we were visiting. This trip he wasn't able to go more than 2 city blocks without having to get into a taxi and head back to the hotel. I had noticed that these symptoms were improving with rest. Things began to rapidly deteriorate about a week after returning from vacation. To hold his head up he had to have it propped up with both hands. His speech had become extremely difficult to understand... It seemed to be one long slur most of the time. During all of this we were waiting for a neurology appt. which had come with an 8 week waiting period. By mid-may, he was no longer sleeping through the night and could barely eat or speak. One morning, he was almost totally unable to make it up a flight of stairs and became increasingly confused. He had begun hallucinating and was appearing to have problems breathing. We headed to the hospital and he was admitted immediately as he was in the midst of respiratory failure.
We were faced with the difficult choice of intubation... We were told that if ALS was what he might have, then intubation would have been permanent. But if it was MG or another treatable condition we could expect to see the breathing tube removed. We had about 25 minutes to make this choice before it would have been too late...
After being intubated he was almost immediately started on Mestinon as well as prednisone to help his respiratory recovery, and over the course of about 3 and a half weeks was given larger and larger doses. We immediately saw imrovements. He could hold his head up again, and after the intubation was brought to a tracheotomy we noticed that his speech has begun returning as well. He eventually was able to speak with little slurring and more air behind his words when he had his "speak valve" on. His swallowing abilities also seemed to return (we were in the midst of testing them with different fluids and foods). Four different neuros consulted all were of the opinion that it was a myasthenic crisis which brought us into the ICU and that the subtype of myasthenia he had often required 100+ day stays in an ICU setting to wean from the ventilator and make a recovery.
Things seemed to be improving at a slow but noticeable pace.
On Monday, a new doctor began ICU rotation and said that since admission, little progress has been made. He has totally stopped the mestinon and brought in a new neurologist who has said that MG is on the bottom of his list of possible diagnoses and that ALS is more likely. Today, 2 days after the last dose of mestinon, his speech is again very difficult to understand and he is again slumped over unable to hold up his head and is again having a lot of trouble breathing. Blood samples sent out showed negative for both of the possible tests for MG. We had initially been told that there is a percentage of MG patients who show negative to both of these tests.
Upon admission to the hospital, my Dad was almost immobile. He couldnt go more than 10 or 20 meters without getting absolutely winded and having to sit down for about 20 minutes to recover. Throughout his stay in ICU he has been having daily physiotherapy and has apparently made great progress. He started out 9 days after being admitted being able to march 15 or 20 steps on the spot before having to get back into his bed for the day. Friday (nearly 2 months later), he was able to ride an exercise bike in the rehab center of the hospital for almost 13 minutes, as well as taking two seperate 200meter walks. Also, when we were admitted he was obviously on life support 24/7. Now his trach. is taking in "room air" and he is breathing without support for 16 hrs a day, being rested at night back on the ventilator on minimal settings.
I am getting so many different answers from so many different doctors. Some have actually straight up said "the only thing i can completely rule out is ALS" and now I am hearing that it is actually the likely diagnosis.
My main questions are: Is it possible for a recovery like i have described to occur if it was ALS? The current DR says that because of how bad my Dad came in, what we may be seeing is just the results of some extra fluid and oxygen. My understanding of ALS was that it was impossible to make improvements... I would have thought that once on the ventilator he would be unable to wean off to 16 hrs a day. It had seemed to me, and many other nurses and Drs that he was, albeit extremely slowly, getting stronger and better. Do ALS patients experience this sort of improvement? Does Mestinon produce lasting, significant improvement in ALS patients? No one can give me any sort of honest, clear answer at the hospital.
AM I being unrealistic? Am I in denial? I am so confused and exhausted. I know that I am not the patient here, but the course of this all has really drained me. The ups and downs of the ICU are taking a toll. I hope that I can get some answers soon.
Thank you in advance for any and all input you can give me. I think it is so amazing that so many of you seem to be able to keep a positive outlook throughout this stressful, oftentimes discouraging journey.
Matthew