Trying2Bcalm
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- Aug 28, 2022
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- Learn about ALS
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Hello - an advanced thank you to anyone that reads and/or comments to this post. I have read the Read before posting and found it very informative and reassuring to a great deal as I have read it many times. I will describe things going on with me but I think I have a couple of questions just outside the scope of that post.
About the first week in May 2022, I noticed twitching in my calves. Heavier in the left I think at first, quickly evened out and lately seems more so in my Right. I did manage to hold off on google for a few days and wasn't worried until I read about being accompanied by atrophy and checked. My left calf is noticeably smaller. They measure 18 3/4 on right and 18 1/4 on left. It took me weeks to associate that size difference with a grade 2 tear about 11 years ago playing softball. I had an MRI on it but will confess I didn't properly rehab it. Many ppl from my wife to the chiro to my PCP feels its entirely possible that that is what is responsible to the size difference. (the measurements have been consistent from May until now at 1/2 difference)
Along these past months, I have noticed twitches occur in shoulders, forearms, hands, thighs, feet, buttocks, lips, faintly in cheeks and rarely in torso. I have had about 2 or 3 electric shock type twitches in my tongue over this time. All of these outside of calves are a lot more rare and seem to be over fairly quickly after starting. My calves begin every time I stop moving. I began testing myself with calf raises and heel walking right away so I don't believe there was any clinical weakness (before and since seeing Neuro).
I finally got so anxious that I saw my PCP at Kaiser Permanente (basis for a question to come) on July 6th. She did not feel this was ALS or another MND but gave me a referral to a Neurologist. That night, an appointment opened up for the next day, July 7th. Dr. Jason Rosenberg, whom I believe to be just a general neurologist and not a specialist in MND/ALS but surely a qualified Neuro. He gave me the clinical exam and said he finds no signs of upper motor neuron issues/clinical weakness; but took note to say that I am still very muscular from football and if the weakness is early, he could miss it. He saw this was building my anxiety while being somewhat assuring all at the same time! He took notice of this in his notes (so I believe he was focused on me as a patient).
He got permission to squeeze me in on the schedule for an EMG/NCS for the next day; July 8th....I'm sure my anxiety levels won the lottery with getting these 3 appts. in consecutive days. I am attaching the report to this post and since I have had a hard time interrupting what these numbers on the NCS mean in plain English - please help me with any insight you can. This was done by Dr. JOSILANE MOURA MIRANDA.
She said the EMG is normal. She listed overall as Essentially Normal - - This definitely is a trigger with the word 'essentially'. The reason, as you will see on the report is that my EDB has less bulk. - causing mildly decreased amplitude but normal distal latency and normal conduction velocity. (Basis for a question to come) And through the month of August, I seem to have symptoms of Mortons Neuroma on the right foot and since its the same foot as the EDB, I'm still nervous but I have an appt. with a Podiatrist on 9/6. (any associated ALS symptom you can think of here?)
Earlier this month, I did additional bloodwork (all previous bloodwork showed my pcp no area of concern), but this time for B12 levels which was low 300s so I have started a liquid supplement 3 weeks ago or so. Not a lot of noticeable changes in the twitches (maybe slightly less overall in the calves but hard to say)
As you can imagine, I have experienced everything from constant twitching in one spot at peroneal nerve just below outside of right knee....(that even freaking hurt for a few days in a row) to phantom migrating numbness when I get up or start to walk somewhere to my brain playing tricks on me about dents in muscles, sure signs of new atrophy....anything to scare myself silly.
So! Through all this, I have tried to stay as calm as possible but its been difficult - the Read this first post really got me through a lot of nervous days and sleepless nights. I have indeed seen the doctors and gotten the tests and exams. All seems to point to no ALS or MND but.....
I have read on these forums about muscle twitches still being the first symptom, even with a clean EMG and clean neuro exam. Is this actually true and do I need to still worry and keep doing follow up EMGs?
What do you feel is more accurate relative to widespread muscle twitches; some information points to this meaning both ALS and non-ALS symptoms....I'm confused.??
What do you feel about the thinner (less bulk) EDB muscle on my right foot that created the decreased amplitude?? everything I seem to be able to find on this is that it definitely points to a MND issue and likely an ALS warning sign because of axonal involvement. please help with input here.
And finally, since this was all done at Kaiser Permanente, do you believe this to be a credible place to have all this important work done?? (I do not want to put anyone or any place in a bad light but I am asking your thoughts because I am more concerned about my health here....hopefully that's not a bad thing...)
Thank you again to anyone that can provide more or better information on my above questions/issues. I'm really trying to trust the doctors and the tests here......
God Bless to you all!
About the first week in May 2022, I noticed twitching in my calves. Heavier in the left I think at first, quickly evened out and lately seems more so in my Right. I did manage to hold off on google for a few days and wasn't worried until I read about being accompanied by atrophy and checked. My left calf is noticeably smaller. They measure 18 3/4 on right and 18 1/4 on left. It took me weeks to associate that size difference with a grade 2 tear about 11 years ago playing softball. I had an MRI on it but will confess I didn't properly rehab it. Many ppl from my wife to the chiro to my PCP feels its entirely possible that that is what is responsible to the size difference. (the measurements have been consistent from May until now at 1/2 difference)
Along these past months, I have noticed twitches occur in shoulders, forearms, hands, thighs, feet, buttocks, lips, faintly in cheeks and rarely in torso. I have had about 2 or 3 electric shock type twitches in my tongue over this time. All of these outside of calves are a lot more rare and seem to be over fairly quickly after starting. My calves begin every time I stop moving. I began testing myself with calf raises and heel walking right away so I don't believe there was any clinical weakness (before and since seeing Neuro).
I finally got so anxious that I saw my PCP at Kaiser Permanente (basis for a question to come) on July 6th. She did not feel this was ALS or another MND but gave me a referral to a Neurologist. That night, an appointment opened up for the next day, July 7th. Dr. Jason Rosenberg, whom I believe to be just a general neurologist and not a specialist in MND/ALS but surely a qualified Neuro. He gave me the clinical exam and said he finds no signs of upper motor neuron issues/clinical weakness; but took note to say that I am still very muscular from football and if the weakness is early, he could miss it. He saw this was building my anxiety while being somewhat assuring all at the same time! He took notice of this in his notes (so I believe he was focused on me as a patient).
He got permission to squeeze me in on the schedule for an EMG/NCS for the next day; July 8th....I'm sure my anxiety levels won the lottery with getting these 3 appts. in consecutive days. I am attaching the report to this post and since I have had a hard time interrupting what these numbers on the NCS mean in plain English - please help me with any insight you can. This was done by Dr. JOSILANE MOURA MIRANDA.
She said the EMG is normal. She listed overall as Essentially Normal - - This definitely is a trigger with the word 'essentially'. The reason, as you will see on the report is that my EDB has less bulk. - causing mildly decreased amplitude but normal distal latency and normal conduction velocity. (Basis for a question to come) And through the month of August, I seem to have symptoms of Mortons Neuroma on the right foot and since its the same foot as the EDB, I'm still nervous but I have an appt. with a Podiatrist on 9/6. (any associated ALS symptom you can think of here?)
Earlier this month, I did additional bloodwork (all previous bloodwork showed my pcp no area of concern), but this time for B12 levels which was low 300s so I have started a liquid supplement 3 weeks ago or so. Not a lot of noticeable changes in the twitches (maybe slightly less overall in the calves but hard to say)
As you can imagine, I have experienced everything from constant twitching in one spot at peroneal nerve just below outside of right knee....(that even freaking hurt for a few days in a row) to phantom migrating numbness when I get up or start to walk somewhere to my brain playing tricks on me about dents in muscles, sure signs of new atrophy....anything to scare myself silly.
So! Through all this, I have tried to stay as calm as possible but its been difficult - the Read this first post really got me through a lot of nervous days and sleepless nights. I have indeed seen the doctors and gotten the tests and exams. All seems to point to no ALS or MND but.....
I have read on these forums about muscle twitches still being the first symptom, even with a clean EMG and clean neuro exam. Is this actually true and do I need to still worry and keep doing follow up EMGs?
What do you feel is more accurate relative to widespread muscle twitches; some information points to this meaning both ALS and non-ALS symptoms....I'm confused.??
What do you feel about the thinner (less bulk) EDB muscle on my right foot that created the decreased amplitude?? everything I seem to be able to find on this is that it definitely points to a MND issue and likely an ALS warning sign because of axonal involvement. please help with input here.
And finally, since this was all done at Kaiser Permanente, do you believe this to be a credible place to have all this important work done?? (I do not want to put anyone or any place in a bad light but I am asking your thoughts because I am more concerned about my health here....hopefully that's not a bad thing...)
Thank you again to anyone that can provide more or better information on my above questions/issues. I'm really trying to trust the doctors and the tests here......
God Bless to you all!
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