2 Year Anniversary: Mixed Emotions

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Frumpy

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This weekend marks 2 years for me. And with it comes mixed emotions. When this BFS crap first hit me I was an emotional mess just like everyone else. I would come to this board and read stories of those who had come before me. I needed advise, support, and reassurance. (all of which I received and still continue to find here)When I would read the 6 month 1,2.3 year anniversary posts I had 3 distinct thoughts. 1) If that person has been cleared by their neuro and has made it this long they must know for sure they don’t have ALS.2) I hope someday I can post that I made it that long, because then I will know for sure that I am fine. 3) I can’t believe this person has suffered for this long……I hope I don’t. So what I have learned that I can pass along?1) I am very grateful to God that it has been two years and I can still do most of what I did before this all started. I used to be an avid runner but since BFS I have never been able to find my stride or recover after runs. So I have stopped that activity. But the fact is I am still able to play with my kids, eat, laugh, work, play softball, and function like everyone else. And for that I am rejoicing. 2) Since my one year post my symptoms have come down. I still have my hot spots like my right leg (calf) and in the last month I have developed a nasty and painful twitch in my left thumb. This twitch is relentless and doesn’t quit for a second. But overall my symptoms are down. (or at least I am becoming numb to them) 3) If my neuro and emg where wrong….then I should have distinct symptoms or be dead by now. For those of us who question if our doctors know what they are doing, just wait a few months and see if anything changes. If you are still able to function that I guess your neuro was right. (after all what do they know…..they only had 4 years of pre-med, 4 years of med school, 4 years of residency, and 2 years of a neuro fellowship) I know more than them after 15 min on the internet!!! 4) BFS sucks. I wish I could say after 2 years I am totally fine physically and mentally. The fact is I am not. I still twitch a lot and bad thoughts still enter into my head. So if you still struggle (newbie or a veteran) you are not alone. 5) Listen to Mario. This man has forgotten more about BFS than most of know. He knows what he is talking about and has been through it all. I can’t say enough about how much I appreciate him. 6) Read what I wrote 1 year ago. I stand by every word.
 
Excellent post mjc. I also liked reading the link to your 1 year follow up. I think its a very realistic account for what BFS is in the first two years. For many, its more of a mental disease than physical. Obviously, the physical symptoms are very real and not normal. But its so hard to come to terms with it, even though we neuro after neuro telling all of us the same thing, that is is benign and not going to hurt us. Well done. -Matt
 
Sound Advice.Any Newbie would do well to read Mariomanglers posts, and read them well. Glad you are doing well Mjc! see you next year for the 3 year update!
 
DarrGood to hear from bro. How have you been? Have you heard from Robbie lately? We emailed about 6 months ago. He is still kickin and twitchin but moving forward with life. One of the biggest things i hate about BFS is when you start to get arrogant it kicks you the ass. I was doing well mentally for many months (yep still twitched...but didnt care) but in last few weeks this left thumb twitch is driving me wild. I feel like Mario's avatar. Angry and a little scared. Stay in touch my friend (you are coming up on your 2 years soon)
 
MJC,Do you get pain in your hands before the thumb twitch? My experience is that the symptoms are very variable. From parathesia to muscle aches to twitching. I look at my hands a lot and wonder if they are going to atrophy. Had a clean EMG on the very hand and arm i worry about a few months ago but still wonder.
 
I have alos developed a hotspot between my left thumb and index in the last three weeks, it happens every day, not 24/7 but maybe 50-100 times day in that one spot, i also twitch occassionally in the other hand too and still randomly all around my body.....the left thenar twitch is so annoying though because i have never had it before nor have I ever noticed having a hotspot for this long (although thenar is easy to notice so maybe I am just focusing on it too much)anyway i first noticed twitching in the mid 90's when I was a teenager, had no idea what they were, just ignored them and they happened less and less through the years, the last 5 months though after googling about ALS they are in overdrive, i got a clean EMG and MRI and nerve conduction test about a month ago (before my hotspot thenar twitch started)it's just so frustrating seeing my index finger or thumb being jerked a little bit and having no idea what is causing it or why it is happening or when it will stop happening, when we have no explanation for this behaviour it is of course terribly tempting to fear the worst, when something happens in our bodies that has never happened before and continues for a long time that is unusual and that doesn't occur in other people then of course we get fearful and anxious and ask why and we got no answers so we go on living in fear hoping it's "benign" and hoping we don't suffer weakness/atrophyI am incredibly grateful that I can run, walk and talk every day and I want to think more positively and I udnerstand my case history more than likely points away from bad stuff and I want to distract myself with more life-affirming stuff, hobbies, career progression etc., and i'd love to meditate and do yoga and just let this wash over me and accept the twitches and not freak out when my thenar keeps going but my mind is still locked into "what if this is a rare case/why is this strange twitch continuing on and on every day/why are these fasciculations happening" and i get no answers and i find that hard to accept so I continue to fear the worst and of course fearing the worst is only exacerbating the symtoms but when I get constant reminders, every few minutes as my thenar twitches that something weird and unexplainable is happening to you that is a known associated symptom with an awful disease then it's hard to make the leap of faith and write it off as "nothing" and "benign"....i wish my mind could do that but I'm not there yet and i'm still unsure how to get there
 
A twitch between the thumb and index finger is nothing to be concerned with. I twitch all over and during my EMG, both thenar muscles were twitching away (along with most other muscles in my body). They stuck the needles right in there and it was all clear. My thenar muscles twitch every single day, more like every 10 minutes or so. Sounds like normal BFS to me. -Matt
 
AcctYeah its painful...but at the join and the meat part of the muscle. Like if i hold four fingers up my thumb really hurts. The twitch is on the inside of the hand. The meaty part by the palm. It is so aggressive that my thumb moves. It is aggravated by me using my thumb. Like typing this will cause it to go nuts. babajojo. Thanks for your insight. I am not on this board much but i did read your report from Mayo (I found it very encouraging)...so glad things worked out for you!
 
I know what you mean about being able to take a leap of faith into not believing it is something bad and accepting that you are not going to be that rare case. I struggle with that too. And as someone who considers herself a person of religious faith, you would think that would make it easier....but I'm not there. So, then I feel guilty about that!! And guilt leads to anxiety which causes more twitches. ARGGGG!!! I am so my worst enemy.
 

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