ktroopa
New member
- Joined
- Jul 31, 2007
- Messages
- 5
- Reason
- PALS
- Diagnosis
- 00/0000
- Country
- US
- State
- WA
- City
- Seattle
Hi all,
Well, after 18 years, I'm back! I posted back in 2007 about neck, leg symptoms (pain, perceived weakness), and body wide twitching. Clear EMG. Eventually, that led me to have an ACDF surgery in my neck at C3/C4 where I had spinal cord compression. All symptoms resolved. My prior post here: Concerned about ALS (long!)
Fast forward to late April, I was in India where I had food poisoning, followed by 2 rabies shots due the potential of getting scratched by a bat. Upon returning home, suffered from laryxphareageal reflux. Put on high dose PPI. Subsequently developed stomach pains and bloating. Upper endoscopy clear, stopped PPIs, and GI symptoms resolved.
Earlier this month, my left leg felt weak at work as if I had to put more effort standing on it. A few days later, I developed bilateral pain in my legs when standing. I would characterize the pain as dull, achy, and accompanied by a hard to describe heaviness/stiffness, a certain weakness that I feel at the knee joints. The discomfort isn't as apparent when walking, and isn't felt when sitting or laying down. Then came the all-too-familiar body wide twitching. Eerily, this presentation resembled by symptoms back in 2007.
A couple of weeks later, neck pain came on, left arm pain down to the hand, through the deltoid to index and thumb. My left arm feels fatigued, both arms have a burning feeling at times.
The leg pain has somewhat subsided, leaving me with bilateral perceived leg weakness worse in my left leg, feeling like my legs are unstable and want to give out/buckle. That is the most distressing symptom, and is affecting my quality of life, in addition to inducing a tremendous amount of stress. When I test my strength though, I still feel strong and can still run 4 miles making good time. When I wake up, the sole of my left foot sometimes tingles (pins and needles) and my left leg is sometimes numb. When I woke up this morning, my right arm was numb. This occurs with a stiff neck feeling and I feel is positional with my neck.
Imaging: MRIs of brain, thoracic, and lumbar spine are clear. Cervical spine MRI revealed severe spinal canal stenosis at C5/C6 and moderate to severe stenosis at C4/C5. CK mildly elevated. All other blood work (vitamins, etc.) clear.
I was examined by an ALS clinic director last week: DTR's: 2+ to 2++ with spread but negative Hoffman's bilateral symmetric. Toes mute bilaterally. Strength 5/5 throughout. He did admit that he was concerned before seeing me, with my symptoms on paper of leg weakness and fasciculations. He then shared that he feels better about the situation after understanding my history and examining me. He said that in ALS, he sees more jerky reflexes and that clinical weakness shows up along with the twitching. He wants to do a thorough 2-hour EMG next month due to my perceived weakness with twitching. He's says the cervical stenosis, and my prior history of surgery in the cervical area resolving symptoms, point to my neck as the culprit although he would defer to a neurosurgeon whom I'm meeting in a couple of weeks. He stated that if the EMG is clear, cervical stenosis would be the most likely diagnosis.
What are your thoughts on my situation? I've been a wreck these last few weeks. The weakness is freaking me out.
Thanks for any input. Your support is appreciated during this difficult time.
Well, after 18 years, I'm back! I posted back in 2007 about neck, leg symptoms (pain, perceived weakness), and body wide twitching. Clear EMG. Eventually, that led me to have an ACDF surgery in my neck at C3/C4 where I had spinal cord compression. All symptoms resolved. My prior post here: Concerned about ALS (long!)
Fast forward to late April, I was in India where I had food poisoning, followed by 2 rabies shots due the potential of getting scratched by a bat. Upon returning home, suffered from laryxphareageal reflux. Put on high dose PPI. Subsequently developed stomach pains and bloating. Upper endoscopy clear, stopped PPIs, and GI symptoms resolved.
Earlier this month, my left leg felt weak at work as if I had to put more effort standing on it. A few days later, I developed bilateral pain in my legs when standing. I would characterize the pain as dull, achy, and accompanied by a hard to describe heaviness/stiffness, a certain weakness that I feel at the knee joints. The discomfort isn't as apparent when walking, and isn't felt when sitting or laying down. Then came the all-too-familiar body wide twitching. Eerily, this presentation resembled by symptoms back in 2007.
A couple of weeks later, neck pain came on, left arm pain down to the hand, through the deltoid to index and thumb. My left arm feels fatigued, both arms have a burning feeling at times.
The leg pain has somewhat subsided, leaving me with bilateral perceived leg weakness worse in my left leg, feeling like my legs are unstable and want to give out/buckle. That is the most distressing symptom, and is affecting my quality of life, in addition to inducing a tremendous amount of stress. When I test my strength though, I still feel strong and can still run 4 miles making good time. When I wake up, the sole of my left foot sometimes tingles (pins and needles) and my left leg is sometimes numb. When I woke up this morning, my right arm was numb. This occurs with a stiff neck feeling and I feel is positional with my neck.
Imaging: MRIs of brain, thoracic, and lumbar spine are clear. Cervical spine MRI revealed severe spinal canal stenosis at C5/C6 and moderate to severe stenosis at C4/C5. CK mildly elevated. All other blood work (vitamins, etc.) clear.
I was examined by an ALS clinic director last week: DTR's: 2+ to 2++ with spread but negative Hoffman's bilateral symmetric. Toes mute bilaterally. Strength 5/5 throughout. He did admit that he was concerned before seeing me, with my symptoms on paper of leg weakness and fasciculations. He then shared that he feels better about the situation after understanding my history and examining me. He said that in ALS, he sees more jerky reflexes and that clinical weakness shows up along with the twitching. He wants to do a thorough 2-hour EMG next month due to my perceived weakness with twitching. He's says the cervical stenosis, and my prior history of surgery in the cervical area resolving symptoms, point to my neck as the culprit although he would defer to a neurosurgeon whom I'm meeting in a couple of weeks. He stated that if the EMG is clear, cervical stenosis would be the most likely diagnosis.
What are your thoughts on my situation? I've been a wreck these last few weeks. The weakness is freaking me out.
Thanks for any input. Your support is appreciated during this difficult time.
