Thegabe101
Member
- Joined
- Jan 16, 2018
- Messages
- 10
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- WA
- City
- Seattle
I want to keep this thread short as possible- tough to do since my story is long.
I have read all stickies and have in fact been lurking on forum for months. I know everyone here my name as creepy as it sounds. I have never felt so deeply empathetic toward a group of people as I now do toward pALS. Have researched BFS and many neurological conditions with rigor, including reading tens if not a hundred academic articles on ALS.
I am a 28 year old male from Seattle who has been in fantastic shape my entire life. Competitive basketball player, avid backpacker, etc.
August 17- Strange virus while living in China. Night sweats, rash, the like. Notice a twitch in left calf. Thought nothing of it.
September 17- Wake up one morning to a feeling of weakness in left leg that has not gone away. Accompanied now by persistent twitching in calf. Feeling is difficult to explain; sort of like leg is heavy. Walking feels strange (still does) but no one says they notice anything.
October 17- Twitching spreads. True fear sets in when I notice what I insist is atrophy in my left calf. There is absolutely, without question (confirmed by photos I combed through of my leg in the past) a palpable chunk of muscle missing in the thickest part of the left gastrocnemius. The entire muscle is squishier than the left and measures ~1cm less than the right.
October-November 17- Two EMGs while in China at a fairly reputable Western hospital. Doctors clear me, though the EMG reports list voltages and polyphasic % that I find suspicious. Return to Seattle.
January 18- Go to ALS gold certified Virginia Mason clinic in downtown Seattle. See Dr. Xuan Wu. Seems unconcerned due to lack of clinical signage and my strength. Reflexes slightly brisk but bilateral. Upper motor signs pretty much absent except for "a beat" of clonus in right leg (normal leg). Does not confirm atrophy but barely looks. Offers EMG, which she conducts herself. LOADS of fasiculations. This is where I start to sound crazy- When the needle was in my left leg I am nearly positive there were fibrillations and sharp waves. Classical "raindrops on a tin roof" sound and clunky sharp wave sound. Nonetheless she seems unconcerned and says EMG is clean; leaves me feeling simultaneously suspicious- (because I am a bright guy and did loads of research and YouTubing {I know how it sounds} on ALS positive EMGs and I swear that leg did not sound right- and shameful for doubting the acumen and even ethics of a PhD. level doctor (because I thought she was dismissing me and not paying attention on EMG due to my age, muscular build and remaining strength).
Current- Fasiculations have become intense- 24/7, 365 bodywide, from lightning twitches to thumpers to spasms. I do not get cramps out of the blue but can induce them very easily, especially in calves. When I say I never stop twitching, I mean it- even in places I can't see them, I can put a finger to the skin and feel the muscle twitching or vibrating deep under. Feeling in leg remains, though it is hard to say it has worsened. What is new is I get intense front of ankle pain (where it dorsiflexes) after running for any more than half a mile and I am now struggling to play basketball because of the intense pain in my left ankle after a few minutes. It's as if the foot does not want to be picked up anymore.
What is CONFUSING (and what I feel guilty talking about here, though I feel it is relevant) is that my leg is still strong- I can grab the rim on the basketball court jumping off the "weak" leg, can deadlift 350 pounds, and can still do all of the class hypochondriac tests- tiptoes, calf raises, heel walk, balance on one foot, etc. Trust me when I say that this is what has kept me from posting for so long, and I still feel trepidation in doing so due to the strength in my leg.
However, I am an intensely physical person who knows his body well. Thus, these things have me deeply concerned:
1- Definite sensation of weakness in my leg. Walking feels strange, awkward, like I have to put more effort into picking that foot up.
2- Fasiculations that DO NOT wax and wane and have grown steadily in intensity since the point they started. Now getting so intense that they ripply clothes and I am trying to hide them.
3- Most of all, DEFINITE atrophy (or something?) in the bad leg. The calf muscle palpates completely differently from the right, is confirmed smaller, and has a visible chunk of muscle missing that was there in old photos. If it's at all helpful (or if someone doesn't believe me), I am happy to post photos.
4- Cramping and trouble running, though that's less of a concern.
I am truly sorry for the length of this post. I am aware of the effort pALS put into reading and responding to these. I simply feel that telling the whole story (both why I think I may and may not have ALS) is vital to getting any insight here.
I have been holding off on this for months and am hiding this from my family and friends. Family in particular because it would absolutely shatter their hearts if I got sick and my sister has recently attempted suicide and I am concerned this would push her over the edge.
My gratitude is infinite.
Gabe
I have read all stickies and have in fact been lurking on forum for months. I know everyone here my name as creepy as it sounds. I have never felt so deeply empathetic toward a group of people as I now do toward pALS. Have researched BFS and many neurological conditions with rigor, including reading tens if not a hundred academic articles on ALS.
I am a 28 year old male from Seattle who has been in fantastic shape my entire life. Competitive basketball player, avid backpacker, etc.
August 17- Strange virus while living in China. Night sweats, rash, the like. Notice a twitch in left calf. Thought nothing of it.
September 17- Wake up one morning to a feeling of weakness in left leg that has not gone away. Accompanied now by persistent twitching in calf. Feeling is difficult to explain; sort of like leg is heavy. Walking feels strange (still does) but no one says they notice anything.
October 17- Twitching spreads. True fear sets in when I notice what I insist is atrophy in my left calf. There is absolutely, without question (confirmed by photos I combed through of my leg in the past) a palpable chunk of muscle missing in the thickest part of the left gastrocnemius. The entire muscle is squishier than the left and measures ~1cm less than the right.
October-November 17- Two EMGs while in China at a fairly reputable Western hospital. Doctors clear me, though the EMG reports list voltages and polyphasic % that I find suspicious. Return to Seattle.
January 18- Go to ALS gold certified Virginia Mason clinic in downtown Seattle. See Dr. Xuan Wu. Seems unconcerned due to lack of clinical signage and my strength. Reflexes slightly brisk but bilateral. Upper motor signs pretty much absent except for "a beat" of clonus in right leg (normal leg). Does not confirm atrophy but barely looks. Offers EMG, which she conducts herself. LOADS of fasiculations. This is where I start to sound crazy- When the needle was in my left leg I am nearly positive there were fibrillations and sharp waves. Classical "raindrops on a tin roof" sound and clunky sharp wave sound. Nonetheless she seems unconcerned and says EMG is clean; leaves me feeling simultaneously suspicious- (because I am a bright guy and did loads of research and YouTubing {I know how it sounds} on ALS positive EMGs and I swear that leg did not sound right- and shameful for doubting the acumen and even ethics of a PhD. level doctor (because I thought she was dismissing me and not paying attention on EMG due to my age, muscular build and remaining strength).
Current- Fasiculations have become intense- 24/7, 365 bodywide, from lightning twitches to thumpers to spasms. I do not get cramps out of the blue but can induce them very easily, especially in calves. When I say I never stop twitching, I mean it- even in places I can't see them, I can put a finger to the skin and feel the muscle twitching or vibrating deep under. Feeling in leg remains, though it is hard to say it has worsened. What is new is I get intense front of ankle pain (where it dorsiflexes) after running for any more than half a mile and I am now struggling to play basketball because of the intense pain in my left ankle after a few minutes. It's as if the foot does not want to be picked up anymore.
What is CONFUSING (and what I feel guilty talking about here, though I feel it is relevant) is that my leg is still strong- I can grab the rim on the basketball court jumping off the "weak" leg, can deadlift 350 pounds, and can still do all of the class hypochondriac tests- tiptoes, calf raises, heel walk, balance on one foot, etc. Trust me when I say that this is what has kept me from posting for so long, and I still feel trepidation in doing so due to the strength in my leg.
However, I am an intensely physical person who knows his body well. Thus, these things have me deeply concerned:
1- Definite sensation of weakness in my leg. Walking feels strange, awkward, like I have to put more effort into picking that foot up.
2- Fasiculations that DO NOT wax and wane and have grown steadily in intensity since the point they started. Now getting so intense that they ripply clothes and I am trying to hide them.
3- Most of all, DEFINITE atrophy (or something?) in the bad leg. The calf muscle palpates completely differently from the right, is confirmed smaller, and has a visible chunk of muscle missing that was there in old photos. If it's at all helpful (or if someone doesn't believe me), I am happy to post photos.
4- Cramping and trouble running, though that's less of a concern.
I am truly sorry for the length of this post. I am aware of the effort pALS put into reading and responding to these. I simply feel that telling the whole story (both why I think I may and may not have ALS) is vital to getting any insight here.
I have been holding off on this for months and am hiding this from my family and friends. Family in particular because it would absolutely shatter their hearts if I got sick and my sister has recently attempted suicide and I am concerned this would push her over the edge.
My gratitude is infinite.
Gabe