pete frates Twitching

[netimus]

hello good afternoon
years I have been almost fasciculation by the body, until yesterday had discarded that had als, but seeing the story of Pete Frates (the ice bucket), he stated that
His first symptom was twitching, that unlike what many will claim that fasciculation and rarely the first symptom of als.

[TwitchyDoc]

While ALS does begin with fasciculations occassionaly, it was not that simple. Taken from the articles:

The first indication that something was amiss with Frates' health came after he was hit in the left wrist by a pitch while playing Intercity League ball with the Lexington Blue Sox last summer. When the injury didn't heal, he went to see Dr. Seward Rutkove at Boston's Beth Israel Hospital. Rutkove picked up on other warning signs, including twitching, difficulty running and a general decline in Frates' energy level.

Another one:

In a game last August, a pitched ball hit Frates on his hand, near the wrist. His slow recovery — a year later it has still not healed — was the trigger that got him to the doctor and got him researching it online, but there were other signs. While he was in great shape, there was twitching in his upper arms following races and workouts, and his batting average dropped more than 100 points from the previous year.

“There was one game I went 0-for-4, four groundouts with four broken bats,” he said. “That never happened in my life.”

He felt he was losing speed, and shortly after the season his energy level started dropping.

[netimus]

was on this page,
My Journey from Baseball Star to ALS Patient, 75 Years After Lou Gehrig | Bleacher Report

this part of the text;

It all started with some twitching in my upper body and arms. Drinking some Gatorade or throwing a few more bananas into my diet would surely fix that.

[J4son]

Netimus, it's True he said he first noticed twitching, but if you read the whole article (the one you mentioned) you will see the following.

- He noticed twitching, but at that point he did not see a doctor so no one can say what his clinical or electrical tests would have been. And no one can guess that weakness or abnormal EMG were not present at that time.
- After the twitching and well before his hand injury he started witnessing weakness. So what is written in the article mentioned by twitchydoc is not 100% accurate. The first sign of weakness was not after his wrist injury but well before, when he started seriously struggling with his baseball play.
- After he injured his wrist (the wrist was not broken by the way) he felt even more weakness and couldn’t do simple things like buttoning his shirt. He also felt huge episodes of fatigue and lack of energy.
- 2 years after his diagnosis he can’t speak anymore and can barely move.

So the story is not at all: I twitched for years, with zillions of good EMG and great clinical and then was diagnosed with ALS. Far from it.

[pdodge715]

I can relate, netimus. In fact, I posted in The Support Group just the other day about the full-blown panic attack I had when I read Pete's story. I'm over 2 years into this, diagnosed with BFS, but reading about all the similarities between he and I shook me to the core. TwitchyDoc points out that it wasn't just twitching; this is important to recognize. However, you could just as well say almost all those things about me - Twitching: God yes, constantly. Decline in energy: yep. Difficulty running: maybe. I ran 1.5 miles 2 days ago and still ache all over; but I hadn't run in about 5 months beforehand, so it's most likely normal fatigue. Difficulty healing from an injury: haven't been injured, so who can say.

The thing that caused me the most alarm was that I couldn't find a specific timeline for Pete's progression. Was this over weeks, months, or years? If it was months, OK I've got nothing to worry about. Years? Different story.

Some important realizations I've had that have helped me make some peace with his tragic situation:

1. He wasn't diagnosed with ALS right away because it is exceedingly uncommon in our age group, so his doctors most likely weren't even considering it at first. Pete found ALS via google in October 2011 (so it was probably shortly thereafter that they started looking for it) and was diagnosed 5 months later in March 2012... I found ALS via google in June 2012 so my doctors were looking specifically for it right out of the gate and still came up certain that I don't have ALS. My neuro literally said to me: "I am 100% sure you do not have ALS." That doesn't really leave much room for debate.

2. Look at the progression of his disease. If you watch his YouTube video, you will see that he requires assistance getting out of bed and walking, and that his speech is significantly impaired. In roughly that same time frame, how has my condition changed? Well, it hasn't really. My BFS symptoms snowballed in the first couple weeks, but leveled off after that and haven't really evolved in any significant way since then.

I think the thing that is most frightening for us about Pete's story is that he is an extreme statistical outlier. To most easily overcome the paralyzing fear of ALS, we like to put it in a box: 3-5 year life expectancy, onset in middle-age or later, clinical weakness presents before twitching, twitching without weakness can last no more than 7-8 months, bulbar-onset is a rapid and immediately deteriorating manifestation, etc. The thing is, all of those statements are a pretty accurate description of the bell curve of ALS patients, but there are always going to be some people that land outside the mean - and those people scare the hell out of us BFS-ers because it gives us someone to point to and say: "Well what about him?? See?? I COULD have ALS!!"

It's going to be important to reach back to our roots here. What are the odds? Let's say 30,000 people in the US have ALS. OK. How many of them are under 30? Well, that's a pretty small number. Now, how many of that subgroup presented with muscle twitching for over 2 years before exhibiting clinical weakness? Oh, none of them? OK, either I'm going to revolutionize modern medicine with my unheard-of manifestation of a fatal disease - OR I DON'T HAVE IT.

The sheer panic I experienced the other day when I first read this story was exactly like how I felt when I got my first google result in 2012. And I'm so embarrassed for that. I have survived. I'm one of the lucky ones. There I am reading a horrible story about a guy my age who has a young wife and a baby on the way and is, by all odds, going to die in relatively short order, and the first emotion I feel is self-pity for a condition a neurologist told me I don't have.

It's going to be OK. I'm going to be OK. You're going to be OK.

Deep breaths.

[J4son]

1. He wasn't diagnosed with ALS right away because it is exceedingly uncommon in our age group, so his doctors most likely weren't even considering it at first.

Although I could not find an exact timeframe of his symptoms but with some deduction it seems he was diagnosed within a short time. Less than a year, maybe 9 or 10 months which is somehow common for MND diagnosis, since MND is a diagnosis of exclusion.

Pete found ALS via google in October 2011 (so it was probably shortly thereafter that they started looking for it) and was diagnosed 5 months later in March 2012

While reading about his story I found that he injured his wrist in August 2011, the wrist didn’t heal although it was not broken. After just 2 months in October 2011, he found ALS while Googeling and on one ALS site he founds that he shared 10 of the 12 ALS symptoms listed on that website; 5 months later he was diagnosed. BTW at that moment October 2011, 2 months after his injury he couldn’t button his shirt, and was experiencing a lots of fatigue. He said that he was so tired that when going out he had to periodically rest for short naps. Now before his wrist incident he said he was already experiencing true weakness especially during his baseball play and was worried about it. This weakness followed the onset of twitching but it seems the timeframe was short maybe a few weeks. So the whole thing from twitching to diagnosis seems to have been less than a year.

BTW people should not make confusion between ALS starting with twitching and patients noticing twitching as a first sign. ALS starting with twitching would be, twitching first, with good clinical, good EMG done by a competent Neuro, and a diagnosis of benign twitching that turns later to be malignant. Most people who said there MND started with twitching went to the doctor when weakness appeared. So probably at the time of the twitching clinical and electrical signs were already present, but the patients did not seek any medical attention, contrary to most people here who spend more time at their Neuro’s clinic than in their own home.

I think the thing that is most frightening for us about Pete's story is that he is an extreme statistical outlier.

I don’t think he was a statistical outlier. The timeframe seems normal, the symptoms seem within the frame of what we already know here, and many professional, semi-professional and high-level athletes suffered from ALS at a young age. Under 50 and often under 40. So what Dr. Eisen said here in his email to Helen, that 8 months of twitching without clinical weakness, atrophy or electrical changes are enough to rule out ALS, seems once again to be a valid statement.

[bobajojo]

Guys please get your facts straight before posting stuff like this on here.

I'm from Boston and went to Boston College so I've received and read countless emails and articles about Pete's story. He is an amazing individual and is truly making a difference. In August 2011, he felt something was wrong with his body. Yes, he noticed twitching in his upper body but he had 10 of the 12 symptoms listed on ALSA. TEN OF TWELVE. He could not button his shirts well, he was tripping, we felt that his body was sluggish, etc. This came ALONG with the twitching. He was diagnosed in March 2012, but I can assure you, at no time did his doctors think what he had was benign.

https://www.youtube.com/watch?v=85VkgNt5OgI#t=464

-Matt

P.S. I know Jason already described this in his post above (thank you Jason) but I get really frustrated (more like *beep* off) when people post stuff on here that is not accurate and leads other people to panic.

[Josmo]

Yup exactly !!!
2011 intercity league first symptoms , he met his future wife july 4 2011! So I'm assuming he was ok then all started after wrist injury in august - weakness ! Diagnosis march 2012 and I'm sure prior to that he had a possible dx ! So time frame short not twitching only for 8 months year or 2 !!!!

[Tiber2011]

I read his story and thought the same. I'm posting below what I wrote to another Frates thread:

This is what I speculate:

1. His arms were already weak, and he didn't notice. Or:

2. He obviously knew twtiching can be also caused by vitamin deficinecies. Thus, he wrote that he'd eat bananas and drink Gatorade. Perhaps this twitching was just caused by him being a dehydrated athlete? Perhaps he linked this benign twitching, induced by sports and lack of vitamins which he'd probabaly incur before, to A*** fasics which he learned about after diagnosis?

I pray for Pete.

[vandentennisman]

I thought weakness had to be you something you could not do- like foot drop or cant open a jar. But now this leads me to believe that weakness can be fatigue or the inability to work out as long as you used too. I thought that was perceived weakness and not a sign of ALS

[LKP1231]

I'm so sorry I read this since I'm still waiting for my emg