PBA673
10-30-2007, 03:03 PM
Hello all and thanks for this forum - what a great place for people who are struggling with all the awful symptoms and the possibility of this scary disease.
I seem to have a problem that's different than most. I actually had an EMG yesterday that was positive for denervation in 2 limbs but my doctor (Jefferson Hospital Neurology) is convinced it NOT ALS. Here is my story, I am curious to see what people who live with the disease daily think about it.
In August 2007 my son was in the hospital for a couple of days for an intestinal intussuseption (he is fine now). After staying with him at the hospital, my husband and myself (and even our house guest) have all come down with flu-like symptoms (swollen glands, fever, etc). While my husband and the guest got better in about a week, I developed severe nausea. That went on for about 2.5 weeks during which I had an endoscopy and MRCP (MRI of abdomen) which showed nothing but mild gastritis which was unlikely to cause so much nausea. That went away and was replaced with my first neuro symptoms, headache, severe neck pain and lots of numbness/tingling in the face, temples, jaw and back and top of the head. That went on for a couple of weeks during which I went to the chiropractor and had MRIs of the c-spine (normal) and brain, which showed some non-specific changes in the white matter with broad differential diagnosis, most likely migraines. MRA of the brain was also normal. Then the neck pain got better, face stoped tingling and the head numbness went away only to be replaced with tingling and numbness in both arms and pretty major fatigue. I also seem to be very sensitive to cold (not heat), losing hair like crazy and have joints that are unbelievably loud (never could even crack my knuckles before this). At this point, I have muscle twitching in all areas (which does seem to be getting sparser and better with a lot of stretching), generalized fatigue, problems sleeping (dah!), shooting joint pains and muscle aches that are mostly of the burning kind (even my tongue feels like I burned it once in a while). My feet seem to be tingly most of the time. I have no trouble lifting things even though my muscles do start to burn after about 1 minute of holding my 2-year-old. I am not tripping or falling and I don't really drop things except occasionally from inattention. My strength seems to be fine on the neuro exam (dr said 5 out of 5), I don't think I have the Babinski or Hoffman's even though I do have some hyper reflexes. NCV testing was all fine.
At this point the doctor thinks I had an unusual presentation of Guillain-Barre which caused auto-immune symptoms and peripheral neuropathy. I haven't had any blood work done yet but she wants me to do that, spinal tap, MRIs of lumbar and thorasic regions, SSEP and skin biopsy.
I am seeing Dr. McCloskey at the ALS Clinic at Penn for a second opinion next week (I am amazed at how quickly I got the appointment!).
Any thoughts from the experienced group? Any symptoms that stick out for you as non-ALS-like? With everything that's out there, it's really hard to decipher what could or could not be ALS.
THANKS!
I seem to have a problem that's different than most. I actually had an EMG yesterday that was positive for denervation in 2 limbs but my doctor (Jefferson Hospital Neurology) is convinced it NOT ALS. Here is my story, I am curious to see what people who live with the disease daily think about it.
In August 2007 my son was in the hospital for a couple of days for an intestinal intussuseption (he is fine now). After staying with him at the hospital, my husband and myself (and even our house guest) have all come down with flu-like symptoms (swollen glands, fever, etc). While my husband and the guest got better in about a week, I developed severe nausea. That went on for about 2.5 weeks during which I had an endoscopy and MRCP (MRI of abdomen) which showed nothing but mild gastritis which was unlikely to cause so much nausea. That went away and was replaced with my first neuro symptoms, headache, severe neck pain and lots of numbness/tingling in the face, temples, jaw and back and top of the head. That went on for a couple of weeks during which I went to the chiropractor and had MRIs of the c-spine (normal) and brain, which showed some non-specific changes in the white matter with broad differential diagnosis, most likely migraines. MRA of the brain was also normal. Then the neck pain got better, face stoped tingling and the head numbness went away only to be replaced with tingling and numbness in both arms and pretty major fatigue. I also seem to be very sensitive to cold (not heat), losing hair like crazy and have joints that are unbelievably loud (never could even crack my knuckles before this). At this point, I have muscle twitching in all areas (which does seem to be getting sparser and better with a lot of stretching), generalized fatigue, problems sleeping (dah!), shooting joint pains and muscle aches that are mostly of the burning kind (even my tongue feels like I burned it once in a while). My feet seem to be tingly most of the time. I have no trouble lifting things even though my muscles do start to burn after about 1 minute of holding my 2-year-old. I am not tripping or falling and I don't really drop things except occasionally from inattention. My strength seems to be fine on the neuro exam (dr said 5 out of 5), I don't think I have the Babinski or Hoffman's even though I do have some hyper reflexes. NCV testing was all fine.
At this point the doctor thinks I had an unusual presentation of Guillain-Barre which caused auto-immune symptoms and peripheral neuropathy. I haven't had any blood work done yet but she wants me to do that, spinal tap, MRIs of lumbar and thorasic regions, SSEP and skin biopsy.
I am seeing Dr. McCloskey at the ALS Clinic at Penn for a second opinion next week (I am amazed at how quickly I got the appointment!).
Any thoughts from the experienced group? Any symptoms that stick out for you as non-ALS-like? With everything that's out there, it's really hard to decipher what could or could not be ALS.
THANKS!
