curtrill
Active member
- Joined
- Apr 25, 2011
- Messages
- 40
- Reason
- Learn about ALS
- Country
- US
- State
- TN
- City
- Hometown
New member requesting help and direction. Here's a rundown of my current symptoms and the last 5-6 months. I'll do my best to summarize.
My current symptoms are:
Subjective weekness in all four limbs, chest, shoulders, back, face, jaws. The weakness in my legs has spread up my legs from my calves to quads, hamstrings and glutes.
Heavy arms & legs. Legs feel like concrete while standing.
Exercise Intolerant.
Overall Fatigue.
Overall Decrease in muscle tone (Flacid, especailly calves)
Fasics bodywide (most in lower legs) I get them from my feet to my throat and a few in my torso.
Atrophy? Right foot and calf.
Pain in both hands between thumb and forefinger.
Tongue - teeth impressions, a wide groove in center and perhaps a bit of erosion on surface. It even started bleeding for no reason on the tip a little bit last night after eating ice cream.
Tongue is a bit white on surface (not sure if that's normal).
Slightly Sore/weak throat (only slight, if any swallowing problems).
Tight sensations in my feet when I start walking.
Right toe wants to lose feeling at night .
Buzzing feeling pulsating in lower right leg.
No clinical weakness or loss of coordination, no tripping.
High level of stress for a couple of years.
46 year old male/athletic able to hike miles each day until the last 5-6 months.
Noticed "tightness" behind knees and tingling in hands and feet along with a strange, sort-of numb feeling in right great toe. (Nov. 2010) Tightness with pain in the ball and arch of my right foot had also been occuring 3-4 months prior to this. I assumed arthritis. It did not slow me down.
Began to experience faciculations and fatigue in both calf muscles. Generalized fatigue (feeling of weakness) was also noticed in legs, arms, shoulders, chest. Fasciculations quickly became widespride but concentrated in the calves. Decrease in overall muscle tone and loss of the ability to build muscle. (Dec. 2010)
Referred to a neurologist by GP. No clinical weakness was found. Administer EMG/NCS to "ease my mind" regarding ALS. Single needle insertion was done on right arm/leg and also in between the thumb and forefinger on the left hand where I'd been experiencing an aching feeling. Both tests were clean and I was told by neoro "No ALS. Your chances of developing it were the same as the general population". (Jan. 5th, 2011)
All symptoms continued. Weakness in the calves increased. I'd gone from being able to hike all day to feeling fatigued/weak in the lower legs with just a stroll through the store. This occurred seemingly overnight with the onset of fasciculations.
After follow up visits with the neuro over the next several weeks I went through about 6-8 rounds of blood work, MRI brain and upper cervical, MRI of thorasic and lumber spine (Some slight narrowing, arthritis, slight buldging disk and narrowing were noted-problems I've had for years-nothing to explain symptoms) Additional test was done on my legs to check circulation. All tests for "mimics" came back clear. Spinal doctor confirmed "loss of soft tissue" and my right foot/ankle. Also he notice my right, dominate calf muscle was smaller than my left. The neuro dismissed the observation, insisted that based on her clinical exam and emg that I do not have ALS. She diagnosed me with BFS. She then referred to ALS clinic for second opinion for my peace of mind. (Feb. 2011)
Since it was going to be months before one of the neuro's could see me, the Nurse Practicioner who works with many of the diagnose patients saw me. (March 2011) There were no sensory problems and no clinical weakness was found.
She did observe, "decrease in muscle tone" in my right bicep and pectoral muscle. She recognized a difference in muscle shape in my right calve compared to the left. Fasciculations did not occur during the exam (I bet that's never happened to anyone before) She did point out tongue fasics. After the exam she said, "I cannot tell you yes or no ALS".
She sent me for an EMG/NCS. The EMG was done by an intern doing his neuro turn supervised by an Ass't. Professor of Neurology (March 2011). A single needle insertion was done on my left bicep, hand (between thumb and forefinger) quad and calve. Also my right quad and calve. When the test were complete, the ass't. professor said that both test were clean and did not show any evidence of nerve or muscle damage that would indicate a motor neuron disease.
I followed up a week later with the N/P. She told me that I do not have ALS. She went entirely back through the neuro exam and now did not seem concerned with her previous findings. I showed her the smaller foot and calve muscle. She said she was not concerned with them at this time. Once again, there no were fasics seen during the exam. When I asked her about having them she said it is BFS. In regard to my subjective weakness, she told me to go back to my GP "maybe it's CFS". She told me to come back in 6 months. I saw my GP the following week. He laughed and said if the neuros can't diagnose you I sure can't.
The neuros and my family want me to forget about ALS based on the clean emg's.
Can I?
Fasics driving me nuts! Feeling cotinually worse. Progressivly weak. I would love to forget about ALS and move on. If I could just get my body to listen!
Could it be something else?
Thanks so much for reading through all of this! Any feedback would be appreciated.
curtrill
My current symptoms are:
Subjective weekness in all four limbs, chest, shoulders, back, face, jaws. The weakness in my legs has spread up my legs from my calves to quads, hamstrings and glutes.
Heavy arms & legs. Legs feel like concrete while standing.
Exercise Intolerant.
Overall Fatigue.
Overall Decrease in muscle tone (Flacid, especailly calves)
Fasics bodywide (most in lower legs) I get them from my feet to my throat and a few in my torso.
Atrophy? Right foot and calf.
Pain in both hands between thumb and forefinger.
Tongue - teeth impressions, a wide groove in center and perhaps a bit of erosion on surface. It even started bleeding for no reason on the tip a little bit last night after eating ice cream.
Tongue is a bit white on surface (not sure if that's normal).
Slightly Sore/weak throat (only slight, if any swallowing problems).
Tight sensations in my feet when I start walking.
Right toe wants to lose feeling at night .
Buzzing feeling pulsating in lower right leg.
No clinical weakness or loss of coordination, no tripping.
High level of stress for a couple of years.
46 year old male/athletic able to hike miles each day until the last 5-6 months.
Noticed "tightness" behind knees and tingling in hands and feet along with a strange, sort-of numb feeling in right great toe. (Nov. 2010) Tightness with pain in the ball and arch of my right foot had also been occuring 3-4 months prior to this. I assumed arthritis. It did not slow me down.
Began to experience faciculations and fatigue in both calf muscles. Generalized fatigue (feeling of weakness) was also noticed in legs, arms, shoulders, chest. Fasciculations quickly became widespride but concentrated in the calves. Decrease in overall muscle tone and loss of the ability to build muscle. (Dec. 2010)
Referred to a neurologist by GP. No clinical weakness was found. Administer EMG/NCS to "ease my mind" regarding ALS. Single needle insertion was done on right arm/leg and also in between the thumb and forefinger on the left hand where I'd been experiencing an aching feeling. Both tests were clean and I was told by neoro "No ALS. Your chances of developing it were the same as the general population". (Jan. 5th, 2011)
All symptoms continued. Weakness in the calves increased. I'd gone from being able to hike all day to feeling fatigued/weak in the lower legs with just a stroll through the store. This occurred seemingly overnight with the onset of fasciculations.
After follow up visits with the neuro over the next several weeks I went through about 6-8 rounds of blood work, MRI brain and upper cervical, MRI of thorasic and lumber spine (Some slight narrowing, arthritis, slight buldging disk and narrowing were noted-problems I've had for years-nothing to explain symptoms) Additional test was done on my legs to check circulation. All tests for "mimics" came back clear. Spinal doctor confirmed "loss of soft tissue" and my right foot/ankle. Also he notice my right, dominate calf muscle was smaller than my left. The neuro dismissed the observation, insisted that based on her clinical exam and emg that I do not have ALS. She diagnosed me with BFS. She then referred to ALS clinic for second opinion for my peace of mind. (Feb. 2011)
Since it was going to be months before one of the neuro's could see me, the Nurse Practicioner who works with many of the diagnose patients saw me. (March 2011) There were no sensory problems and no clinical weakness was found.
She did observe, "decrease in muscle tone" in my right bicep and pectoral muscle. She recognized a difference in muscle shape in my right calve compared to the left. Fasciculations did not occur during the exam (I bet that's never happened to anyone before) She did point out tongue fasics. After the exam she said, "I cannot tell you yes or no ALS".
She sent me for an EMG/NCS. The EMG was done by an intern doing his neuro turn supervised by an Ass't. Professor of Neurology (March 2011). A single needle insertion was done on my left bicep, hand (between thumb and forefinger) quad and calve. Also my right quad and calve. When the test were complete, the ass't. professor said that both test were clean and did not show any evidence of nerve or muscle damage that would indicate a motor neuron disease.
I followed up a week later with the N/P. She told me that I do not have ALS. She went entirely back through the neuro exam and now did not seem concerned with her previous findings. I showed her the smaller foot and calve muscle. She said she was not concerned with them at this time. Once again, there no were fasics seen during the exam. When I asked her about having them she said it is BFS. In regard to my subjective weakness, she told me to go back to my GP "maybe it's CFS". She told me to come back in 6 months. I saw my GP the following week. He laughed and said if the neuros can't diagnose you I sure can't.
The neuros and my family want me to forget about ALS based on the clean emg's.
Can I?
Fasics driving me nuts! Feeling cotinually worse. Progressivly weak. I would love to forget about ALS and move on. If I could just get my body to listen!
Could it be something else?
Thanks so much for reading through all of this! Any feedback would be appreciated.
curtrill