I use the word Epiphany because of its double meaning. Of course it means to have a shock of understanding or realization, but It is also a religious term for a feast or party on Jan 6th to celebrate the "revelation of God to mankind in human form, in the person of Jesus Christ" Its more of an Orthodox religious observation, but it is basically a more religious form of Dec 25th.Here is the word from Webster.1 capitalized : January 6 observed as a church festival in commemoration of the coming of the Magi as the first manifestation of Christ to the Gentiles or in the Eastern Church in commemoration of the baptism of Christ2: an appearance or manifestation especially of a divine being3 a (1): a usually sudden manifestation or perception of the essential nature or meaning of something (2): an intuitive grasp of reality through something (as an event) usually simple and striking (3): an illuminating discovery, realization, or disclosure b: a revealing scene or momentSo, because this epiphany happened at church, it seemed to mean more to me....So ANYWAY, I know, long story.One year ago exactly I was at Church with my wife and 2 girls (the were 1.5 and 3.5 then). We were there on a Tuesday night and my girls were in the kids Christmas program where each age group of kids sings a song and then the pastor does a quick 5 minute story about Jesus and its over....typical really fun thing with the kids. I was VERY FREAKED about ALS then. I was just beginning to think my breathing was affected, my swallowing , and I was SURE I had weakness in my arm. I remember trying to hold my 1.5 year old and my arm was getting SO SO tired. I was also sure my legs were going. The breathing, swallowing and arm were all swirling around in my brain and thats all I could think about. I remember sitting in that program a year ago, wondering if I would be on a respirator, in a wheelchair, or even dead next year (this year). I also was *beep* that I wasn't enjoying the holiday season or that christmas program because basically the word ALS was running in my brain over and over like a broken record....I was miserable and scared.Fast Forward to last night - One year later.I was sitting in the same program one year later and was enjoying myself. After the program I was carrying around my 2.5 year old (now she is one year older and 1 year bigger) and not having any problems. I can breathe, swallow, run, play, hold my kids, do my push ups (and I have had 2 EMGs, had 3 or 4 Neuro exams by 3 different docs)....The tests are nice, but this is actually more about my symptoms. I have not progressed at all...if anything, since I am not as scared any more, my symptoms are better (of course I still twitch like crazy). It hit me as I was holding my daughter; I told my wife how scared I was 1 year ago and how I had pictured myself in a wheelchair but none of that happened....I am actually better now. I told her right then and there that I KNEW I was going to be fine...I knew I didn't have ALS...I knew I couldn't have ALS.Quite a feeling. You should all try it. Good Luck and Merry Christmas,Scott
Epiphany: Religious Meaning and Significance
- Thread starter MPLS1970
- Start date
With BFS it is all about time, no matter what our Neurologists tell us, the passage of time is the only diagnosis we believe. I know that is not good news for You Chris, because you are early on in your journey, but your not going to die from this, but it may take a while for you to buy into it.I guess I am fortunate that I am almost three years into this mess, because the last two weeks have been almost unbareable. The muscles in my throat have been twitching non stop for two plus weeks, big thumpers and a constant tremoring of the neck muscles. Last Sunday the muscles on the palm side of my left hand were going bilistik, my whole hand looked like rippling water, my 6 year old daugter saw me looking at my hand and asked what I was doing, I showed it to her and she said "Dad, whats wrong", I have no idea. The muscles in my right leg are beyond description, it feels like the quadracept muscles are constantly shifting positions, like different muscles are switching spots in the leg, and then back again, sleep has been difficult to say the least.But here is my Epiphany, although I am not as conifident as Scott.1-I am three years in, If I had ALS I most likely would be unable to type this post.2-I saw my first Neurologist 1 year into my symptoms, he said "you do not have Lou Gehrigs disease". At one year, the symptoms should have been clear if is was, and if he had said "I have bad news, you have Lou Gehrigs disease" there is a 50/50 chance I would already be dead.3-Maybe the first Neuro missed it? I have seen two others, one a Neruo muscular specialist at the Mayo Clinic, three Neurologists would not have missed ALS.4-Although I no longer run and work out, I can still walk fine, and play the guitar, and that certainly does not jive with ALS.All said though, today is a real, real bad day, my symptoms the last two weeks are by far the worst they have been in three years. It may not be ALS, but I am having a real hard time accepting this thing is benign.
Scott, I am not looking forward to this, but I think it is time to get back on the track of trying to find a reason for these symptoms, my goal was to not to do any additional testing for a year and just let the thing play out, but this new round of crap may force me to head back to the docs, there has to be an answer for this. I believe that stress and anxiety can magnify the symptoms, I am convinced it is not the root cause, there has to be an organic, metabolic, or whatever, reason for this. In the last 3 years I have had no less than 30 viles of blood taken, mostly at the Mayo, and eveything is in the normal range, I showed only a mildly high level of arcenic at the Mayo, they took the test another step and found that it is the good arcenic that occurs naturally, like in shell fish etc. I guess first of the year I will make an appointment with my GP to discuss what options there are. I think first of the year I will make a real effort at getting on the wagon, or off, which ever it is, although I am hard pressed to believe Bud and Jack and coke is the cause of my symptoms, but I have to be honest with myself, it is about the only thing I have not given a shot.
GolferGalaxy
Well-known member
I gave up booze last year around Christmas time through March. My symptoms did not change. However, drinking does make them worse for the next couple of days.CDC
*sipping on Capt'n Morgan and dr.pepper myself* ....just got to make sure my bloods good and ready for the umpteen viles of blood I will be having drawn tomorrow at the Internist. I think Im gonna sneak another reflex and strength test check 
She doesnt have to know why?!?! LOLLovely 
She doesnt have to know why?!?! LOLLovely BlueTurtle76
New member
WOW, I have almost the identical story. Last Christmas (I'm a Lutheran Pastor) I had Christmas services with such anguish that I would not see my girls grow up, I barely made it through the services. IT wasn't until January (a.k.a. Epiphany) that I had a doctor tell me, "absolutely not." Things have been tough throughout with BFS, but I had the same revelation this year, I would be almost dead by now if I had it and I am doing fine.Christ's blessings to you and your young family!
hCapitalize
Well-known member
To Chris, it is all relative, there are some things I can do this year that I could not last year, but when I compare myself to what I was maybe five years ago, yes there are things that cause me pain that did not used to, that would not be the prognosis for ALS though. As I get older things that were effortless now cause pain if I exert too much, pain and stiffness is not the same as atrophy and weakness, it is just a loss in flexibility and stamina I think.
You described what I feel exactly...stiffness and a loss of stamina. But, i am only 53 and was in good shape...until this. I would still like to know the cause of all the symptoms. Like you I am a ways into this, 16 months, and I am actually better than I was a year ago, but not like I was before "it" started.Linda
hCapitalize
Well-known member
Well I am only 53, however by my age my mum had already been in a wheelchair for 10 years so what am I complaining about? and if I were my dad, I would now have only 5 years left to live, a sobering thought for someone who shares my dads tendency to drink.If however I had ALS I would be under the ground already.