jimco80
New member
- Joined
- Jan 24, 2010
- Messages
- 4
- Reason
- Learn about ALS
- Country
- US
- State
- CO
- City
- Boulder
Hello,
First of all, thank you for those that are diligent to post and answer questions on this forum. It appears that many are very helpful. My thoughts are with those that have been diagnosed and those still searching for answers about their conditions.
Secondly, I do have a few questions, per my recent onset of many symptoms. It all started around four months. It came on very quickly, as I can pinpoint the exact hour that I noticed my first symptom. Although I first noticed in one part of my body (right arm and hand), I noticed within a week that this was much more systemic in nature....impacting all limbs, breathing, dizziness, equilibrium and more.....just a very general odd body feeling overall. I had some sensory symptoms also at first...burning feet, tingling, extreme sensitivity to vibration, etc. AND...the tremors, widespread twitching, and buzzing feeling (in head and body) were very bad at first. As this acutely followed a virus, at first I thought this could be GB. I had a neuro exam with MRI's, NCV, and EMG...all normal, so they ruled out GB and MS. I've been closely followed by my initial neuro for the past four months and my PCP sent me to two other neuro's for second opinions (more MRI's and EMGs...normal). All neuro exams have been normal (normal reflexes, absent babinski, 5+ strength, etc) and they've all reached the same conclusion that this is some type of post-infectious fatigue. I don't feel tired, though, just weak....like my limbs just want to hang there...my doctors call that muscle fatigue! I went to the Mayo Clinic in Minnesota last week hoping to get some answers. They had me start in Neuro, since these sounded a lot like neuro symptoms. They wanted to rule out MND and muscular junction neurological diseases. They did a thorough neuro exam, EMG, and more MRI's...all normal. They sent me through several other departments during my week visit and reached the conclusion that this was NOT a neurological disease, and I should make a full recovery in 3-6 months. Mayo told me that this is quite common actually, and they see this often b/c people present w/ all of these neuro-like symptoms acutely following viruses, yet can't find any answers. My symptoms came on and progresssed so rapidly (all within around 2-3 weeks) and since that point everything has just kind of plateud for the past few months. There were times during the first few months where I felt that I was only a few days away from a wheelchair and my right leg was particularly bad in the beginning...but is normal now. To say the least, this is scary and if I'm recovering, it's been very slow.
Can anyone relate to this acute onset and rapid progression? I'm pretty confident in the opinion of my Neuro's (particularly they Mayo clinic) that this should go away with time, but have read on hear about some of the unfortunate stories of misdiagnosis. It just feels weird to have such weak limbs and yet have no answers and doctors telling you that you aren't weak!
Are the twitches, tremors, and body jerks widespread from the onset or in specific regions (in relationship to weakness, progression, etc). Since mine were widespread, my doctors told me that they were not concerned about them. They've basically gone away...although I do feel occassional body jerks at night. I've had three EMG's...all normal.
Finally, I am posting b/c I know there are several others on here seeking answers and a diagnosis. I wanted to share what my neuro's, including the Mayo clinic, have reiterated....they see these types of things all the time that often mimic neurological disorders, yet aren't. There isn't answers in medicine for everything and some things just end up going away w/o answers...they said they actually see that a lot. I don't know what my future holds or where I'll be in a year (recovered hopefully), but I just wanted to share this insight with others looking for answers for unexplained neurological symptoms.
Thank you to anyone that takes the time to read. For those of you that have been diagnosed with ALS, thank you for your courage, perseverance, and diligence to share. I admire your strength.
First of all, thank you for those that are diligent to post and answer questions on this forum. It appears that many are very helpful. My thoughts are with those that have been diagnosed and those still searching for answers about their conditions.
Secondly, I do have a few questions, per my recent onset of many symptoms. It all started around four months. It came on very quickly, as I can pinpoint the exact hour that I noticed my first symptom. Although I first noticed in one part of my body (right arm and hand), I noticed within a week that this was much more systemic in nature....impacting all limbs, breathing, dizziness, equilibrium and more.....just a very general odd body feeling overall. I had some sensory symptoms also at first...burning feet, tingling, extreme sensitivity to vibration, etc. AND...the tremors, widespread twitching, and buzzing feeling (in head and body) were very bad at first. As this acutely followed a virus, at first I thought this could be GB. I had a neuro exam with MRI's, NCV, and EMG...all normal, so they ruled out GB and MS. I've been closely followed by my initial neuro for the past four months and my PCP sent me to two other neuro's for second opinions (more MRI's and EMGs...normal). All neuro exams have been normal (normal reflexes, absent babinski, 5+ strength, etc) and they've all reached the same conclusion that this is some type of post-infectious fatigue. I don't feel tired, though, just weak....like my limbs just want to hang there...my doctors call that muscle fatigue! I went to the Mayo Clinic in Minnesota last week hoping to get some answers. They had me start in Neuro, since these sounded a lot like neuro symptoms. They wanted to rule out MND and muscular junction neurological diseases. They did a thorough neuro exam, EMG, and more MRI's...all normal. They sent me through several other departments during my week visit and reached the conclusion that this was NOT a neurological disease, and I should make a full recovery in 3-6 months. Mayo told me that this is quite common actually, and they see this often b/c people present w/ all of these neuro-like symptoms acutely following viruses, yet can't find any answers. My symptoms came on and progresssed so rapidly (all within around 2-3 weeks) and since that point everything has just kind of plateud for the past few months. There were times during the first few months where I felt that I was only a few days away from a wheelchair and my right leg was particularly bad in the beginning...but is normal now. To say the least, this is scary and if I'm recovering, it's been very slow.
Can anyone relate to this acute onset and rapid progression? I'm pretty confident in the opinion of my Neuro's (particularly they Mayo clinic) that this should go away with time, but have read on hear about some of the unfortunate stories of misdiagnosis. It just feels weird to have such weak limbs and yet have no answers and doctors telling you that you aren't weak!
Are the twitches, tremors, and body jerks widespread from the onset or in specific regions (in relationship to weakness, progression, etc). Since mine were widespread, my doctors told me that they were not concerned about them. They've basically gone away...although I do feel occassional body jerks at night. I've had three EMG's...all normal.
Finally, I am posting b/c I know there are several others on here seeking answers and a diagnosis. I wanted to share what my neuro's, including the Mayo clinic, have reiterated....they see these types of things all the time that often mimic neurological disorders, yet aren't. There isn't answers in medicine for everything and some things just end up going away w/o answers...they said they actually see that a lot. I don't know what my future holds or where I'll be in a year (recovered hopefully), but I just wanted to share this insight with others looking for answers for unexplained neurological symptoms.
Thank you to anyone that takes the time to read. For those of you that have been diagnosed with ALS, thank you for your courage, perseverance, and diligence to share. I admire your strength.