shark083082
New member
- Joined
- Aug 5, 2014
- Messages
- 6
- Reason
- Learn about ALS
- Country
- US
- State
- PA
- City
- Malvern
Good afternoon -
First, I appreciate all of the time and effort and sacrifice all of you put into these forums. Thank you for all you do for those with this disease, raising awareness and supporting each other and yourself and your families.
I've been dealing with some disconcerting symptoms for 10 months now and wanted to inquire for feedback. I'll be brief.
Back in September 2013, I started with burning pain in my thighs and face, intermittent in nature. By November, I was experiencing muscle twitches in my face (cheek, jaw line and lips), as well as both calves and ankles.
Five weeks after the twitching began, I had an EMG and NCV which were clean - no fibs, sharp waves, etc.. Since the holidays, I've continued twitching into my arms, neck, shoulders as well as the hot spots on calves, ankles, feet and face, as well as chronic muscle soreness, myclonic jerks, joint pain, extremely tight muscles and joints.
It's difficult to stay on my feet for longer than an hour without experiencing extreme muscle soreness and stiffness, as well as rapid muscle twitches. I've been to the University of Pennsylvania, where the doctor went through a clinical exam and noted slightly elevated reflexes and a twitches, but did not note clinical weakness. He sent me for brain MRI, cervical MRI, lumbar MRI, all sorts of blood tests - all negative except normal wear and tear on lumbar MRI.
Only blood test issue is elevated (70) liver enzyme. He says he can't find anything wrong and said he could see me in six months if I wanted.
Questions:
1. Would muscle soreness point away from a motor neuron issue?
2. If Dr. saw the twitches, how did the EMG note no fasciculations on the exam?
3. Would a repeat EMG be necessary?
I've tested negative on the ELISA for Lyme but lit up like a Christmas tree on the IGENEX test - six positive bands, CDC positive on western blot, though I know there is a lot of controversy over the testing so I'm not sure I should proceed with heavy dose antibiotics for Lyme.
I'm not sure where to go from here. My wife and I are expecting a baby in 3 months, and the daily muscle pain, tightness, jerks and twitches are taking their toll both physically and mentally. Should I seek out a rheumotologist (even though I was tested for lupus and autoimmune markers)? Should I ask for a repeat EMG?
Any thoughts would be appreciated.
First, I appreciate all of the time and effort and sacrifice all of you put into these forums. Thank you for all you do for those with this disease, raising awareness and supporting each other and yourself and your families.
I've been dealing with some disconcerting symptoms for 10 months now and wanted to inquire for feedback. I'll be brief.
Back in September 2013, I started with burning pain in my thighs and face, intermittent in nature. By November, I was experiencing muscle twitches in my face (cheek, jaw line and lips), as well as both calves and ankles.
Five weeks after the twitching began, I had an EMG and NCV which were clean - no fibs, sharp waves, etc.. Since the holidays, I've continued twitching into my arms, neck, shoulders as well as the hot spots on calves, ankles, feet and face, as well as chronic muscle soreness, myclonic jerks, joint pain, extremely tight muscles and joints.
It's difficult to stay on my feet for longer than an hour without experiencing extreme muscle soreness and stiffness, as well as rapid muscle twitches. I've been to the University of Pennsylvania, where the doctor went through a clinical exam and noted slightly elevated reflexes and a twitches, but did not note clinical weakness. He sent me for brain MRI, cervical MRI, lumbar MRI, all sorts of blood tests - all negative except normal wear and tear on lumbar MRI.
Only blood test issue is elevated (70) liver enzyme. He says he can't find anything wrong and said he could see me in six months if I wanted.
Questions:
1. Would muscle soreness point away from a motor neuron issue?
2. If Dr. saw the twitches, how did the EMG note no fasciculations on the exam?
3. Would a repeat EMG be necessary?
I've tested negative on the ELISA for Lyme but lit up like a Christmas tree on the IGENEX test - six positive bands, CDC positive on western blot, though I know there is a lot of controversy over the testing so I'm not sure I should proceed with heavy dose antibiotics for Lyme.
I'm not sure where to go from here. My wife and I are expecting a baby in 3 months, and the daily muscle pain, tightness, jerks and twitches are taking their toll both physically and mentally. Should I seek out a rheumotologist (even though I was tested for lupus and autoimmune markers)? Should I ask for a repeat EMG?
Any thoughts would be appreciated.