Dave's Story

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Dave's Story

Postby dave YY on June 25th, 2003, 10:58 am

I started twitching in Oct. '98 and since then have had episoded of tongue and chewing fatigue that come and go. I'm also hypothyroid and had CFS which confuse things up a bit.

First of those neuros, in Indiana: gave me the EMG within a few months of start of twitching (using a fancy new laptop, not the old yellow machines the other neuros used that look like they're out of a Star Trek episode) and said it was normal. Only did my leg I think. I believe I asked him if it was sufficient only there, and he said yes, that even if ALS were manifesting itself elsewhere he would see "suspicous" things that would cause him to start poking around elsewhere. Under questioning, he said even in its earliest stages an EMG will catch ALS 99% of the time, if not more, but he aknowledged it can miss on rare occasion. At about two and a half years, I saw him again and he said it's "still benign". When I asked him if I'm at a normal population risk for ALS yet he held his fingers about half an inch apart and said "you're this close, almost over the edge." He also added that if it did turn out to be ALS it would be slow, and amount to "a floppy hand or something" (before you set into him on that issue--the father of a friend of mine has had ALS for 21 years and up until last year only his hands were affected--and he's part of a long term study so it's well verified as ALS).

I recently emailed him again saying I'll be in Indiana in July for a visit, that I was still having episodes of tongue and chewing fatigue (never slurring or anything debilitating... occasional swallowing issues but it was always with anxiety periods I think) and asked if at almost five years if I'm out of the woods yet. He was rather noncommittal and said this long without atrophy or weakness strongly supports a benign dx, but that it would be "worthwhile" to come in again to see him. So I'll see him again in July.

The California neuro I saw while living there was a bit different, a Canadian, who also taught EMG at a nearby university med school (both are very respectabel med schools). He was certified in EMG as well as psychiatry and gave me several EMGs over the two years I saw him, though they were obviously for my anxiety and only amounted to like five or six jabs each. He said it's "highly" or extremely" unlikely that my BFS would turn into, or out to be, ALS. I asked him when I could consider myself out of the woods, and he said "let's go for two years." After the two year mark, I reminded him of what he'd said and he goes "great, now let's go for ten!" Under questioning, he said at my stage it's "highly unlikely" that I'll develop ALS, but that on rare occasions, some people "develop problems." It was clear what he meant, as the only topic had been ALS. I didn't nail down the semantics, but he seemed to be suggesting, on RARE occasions, a connection between twitching and getting ALS as much as ten years later.

During the time I was seeing him, I went to get a second opinion from a neuro about MS (I'd had a spot on an MRI) as I was preparing to drop my medical insurance to move to Italy. This lady I think was fairly inexperienced, and at the end of the examination said my tongue was atrophied and that I need a tongue EMG and she suggested it was ALS in a few different ways. I argued that it's natural scalloping of the tongue from my teeth, and I'd had it at least two years. "only two years?" she said--and I said no, that's when I started obsessivley looking at my tongue. We were standing right beside an EMG machine and she wouldn't stick me to settle the matter there, referring me back to my main neuro because he was more qualified. He couldn't see me for a week. My main neuro in CA took one look at my tongue and said it's normal and I didn't even need any more tests, and suggested we photograph my tongue and send it to her with a note explaining what a scalloped tongue looks like. A couple months later I was back in Indiana for the second visit with the Indiana neuro and mentioned my tongue episode. He looked at my tongue and immediately said nothings wrong, and that he knows just by listening to me that I don't have bulbar-onset. That episode was February of '01, and nothing has progressed since then.

(interestingly, neither of these teaching neuros will do tongue EMGs, saying they really give little useful information)

So, after almost five years of twitching, several clean EMG's and clinical exams (one earlier EMG picked up rare polyphasic units that the neuro wrote fell within normal limits and were not mentioned again on later EMGs), I'm apparently not totally out of the woods or back to the same risk as normal populations. I'm not sure why, considering what I've read over the years at Braintalk.

SO, in summary, yes my neuros differ somewhat from what is considered conventional wisdom but not substantiall enough for anyone to worry over. I think the CA neuro might be one of the "old school" types, though I have no real way of judging.

Thoughts are welcome. I might update this as I remember stuff.
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Postby j1 on June 25th, 2003, 2:23 pm

Dave,

I would say you are out of the woods. If I can make it to five years with nothing more substantial I will be pretty satisfied that I may just twitch forever.

For your knowledge, I have been twitching 24/7 in the calves for 13 months...sporadically elsewhere and my hand (between thumb and forefinger for some time). I am pretty convinced that this is benign..ie. I feel there would be something else at this point if it was not..although, like many, Carole's story scared me and I do have my lingering doubts.

Anyway, one thing that I have heard makes me believe things will be ok...If you think about what the twitching represents (dead and dying muscles) then it is safe to assume that something would be showing up either on the EMG or physical exam. If you have twitched for 5 years and nothing is showing up...it is highly unlikely this is "hiding". Twitching in ALS representst the END of the disease process as muscles begin to fade. If you in fact twitch..at some point...your muscles would begin to fail on you. Now..whetther this would be 5 months or 5 years is debateable. But my logic tells me that after a year with no change..except for more twitching..it may be just that...twitching. Hopefully what we have read is fact enough that this is just an annoying benign thing. Take care.
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Postby tlotoxl on June 25th, 2003, 2:27 pm

your neuros seriously believed you were at greater risk than the normal population, even after five years of twitching? that's weird. my neuro seemed quite happy to express his 'high certainty' when he gave me an emg 2 years after the first twitches this past christmas holiday.

on the other hand, with some grief over a postural tremor, my neuro in japan assured me it 'probably' wasn't PD, but said 'although there are no signs of PD, i can never say 100% that it isn't PD'. are you sure that isn't what you're getting from your neuros -- just professional discretion?
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Mayo

Postby graberc on June 25th, 2003, 3:44 pm

I am reminded of the Mayo Clinic study. It found no real link between BFS and ALS, and other. . .

Yet the fact of thematter is. . .they don't know what causes ALS, they don't know BFS, they don't know much of anything. Are they guessing based on previous results? yeah. . .

but at least the previous results are positive.. .

i'm still scared. . .but what can you do? Live. . .and hope, along with every person out there, you never get that disease.
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Postby dave YY on June 25th, 2003, 5:19 pm

Yes, essentially they were saying I'm at (however slightly) greater risk for ALS than the average person because of my twiching (which they have both diagnosed as benign). So they are saying to me, my twitches are benign. But I have slightly exaggerated odds of getting ALS. Considering they are clearly saying I don't have ALS now, doesn't it stand to reason that they're saying on rare occasions, BFS can turn into ALS? When nobody knows what causes either condition, how do we know they're totally unrelated (suppose for example they're both results of hyperexcitability of the anterior horn (or something else I don't have the imagination to invent), with ALS being the more extreme and infrequent outcome?).

I don't buy the doctors covering their asses argument at all. If anything, I get way too much of doctors saying categorically that I'm fine and that the lump in my foot is definitely not cancerous etc. etc. What I gather from my neuros is an unwillingness to use the reasoning that sounds so cut and dried here and at Braintalk, which I myself have freely used and found comfort in... in ALS, twitching is nerves dying and that would show up on EMG blah blah blah--the 2 plus 2 is four logic that sounds so right. I'm totally putting words into their mouths, but I would guess their version would be more like "ALS is this bizarre disease we don't understand much at all, and BFS is this bizarre condition we understand even less, so all I can offer is conventional wisdom from the medical communty, and it is what it is."

I don't know. And actually I dont' worry as much as it may sound. The thin wedge of uncertainty is a small price to pay for not having ALS, and I happily and thankfully accept the odds I've been given.

None of what I've written, or what apparently happened to Carolmarie, changes any odds. They're still the same, hugely in our favor. Hugely. Like, watch out for the falling piano instead, huge.
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Postby j1 on June 25th, 2003, 5:48 pm

Guys,
I think this goes against what the Mayo Study was about. If we choose not to believe that over the word of one or two neuros...then I dunno? The point of that study, is that BFS does not turn into ALS, and they cited many people that prove this case. Why are we now contesting that based upon the word of a couple of neuros who would rather be safe than sorry. I'll stick with the data that is in my favor. I think the real issue is how long is long enough before we are in the clear. The Canadian study tells us 13.4 months is the longest time period someone twitched before being diagnosed (I am sure there are cases that have taken longer), but the mean time is around 7 months. Why are we trying to rewrite the book and challenge that? I have yet to see data that contradicts that. Most stories I have heard have fallen in line with that. However, you always hear about that person that twitched for three years etc..etc... and they developed ALS. I am not sure what to believe, but for my own sanity I will stick with the positive stuff. Otherwise, I may go down that major worry spiral again...and I do not want that.
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5 years come on

Postby KERRI on June 25th, 2003, 5:57 pm

After the first year and a half, I would have figured, I have lived this long, lets get on with, this disease is either very progressive, or rarely slow like steven hawkins case. There are neuro's out there willing to put their asses on the line and say your okay and there are others who are not going to take a chance at a malpractice suit. The neuro I saw in the city specializes in ALS he told me flat out it was BFS he has it as well, it will never be ALS that does not mean you will never get ALS it just means your chances are not any greater due to BFS.

YOu should go on with your life, even if you had ALS, there are very, very, very few cases of ALS being diagnosed after five years of symptoms, and if there were, that is one hell of a slow progression.


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Postby dave YY on June 25th, 2003, 6:22 pm

Please don't put words into my mouth. Or sentences. Whatever. I'm not trying to rewrite the Mayo study (which, for accuracy's sake, does not say BFS never turns into ALS). The Mayo study stands. Nor am I saying that I side with my neuros. But like it or not, they aren't just a couple storefront neuros. I also doubt I'm so unlucky to have picked the only two in the universe with different opinions on BFS.

My take on it is this: I DON'T KNOW. But I do know the difference between extremely rare and never surely borders on the irrelevant.

Two reasons I posted that story: First, someone asked me to. Second, I don't know what to think of it myself. Thanks for the replies that go further than simply demeaning what I wrote in order to protect a status quo.
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Postby Jenn311 on June 25th, 2003, 7:05 pm

Thank you for sharing your story Dave YY, as everyone's experience here is valuable. I was told after I was diagnosed with this bizarre skin problem that my chances of developing cancer in other parts of my body were increased because of this skin problem....but I forgot about it until I ran across the article with the study he had copied off for me. At the time, I remember thinking how insensative it was that he had told me that, but in the end I had forgotten anyway! Too bad I didn't just throw that article away. But it really causes me no stress now. As no one should get caught up worrying about how they will go in the end. It's not how we die that determines who we are, but what we do in the limited number of days between birth and death that determine our quality of life.

If I were Carole, I would be counting my blessings that I had 9 extra months not knowing that I was terminally ill...it's the loss of hope that is the hardest.

Cheers!
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Postby 25 on June 25th, 2003, 8:55 pm

Thanks for sharind Dave.
Jen,
that was beautifully written!!! I really needed to hear something like that to pick me up a bit.
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Postby 25 on June 25th, 2003, 8:56 pm

Thanks for sharing Dave.
Jen,
that was beautifully written!!! I really needed to hear something like that to pick me up a bit.
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Carole

Postby graberc on June 25th, 2003, 10:13 pm

It's all back to Carole isn't it?

Did Carole have BFS?

We don't know. And just because she posted a one time post saying her "twitching is diagnosed as ALS" doesn't help us. Her symptoms were extreme. I myself have never been woken up by a twitch, nor have I lost muscle control. . .

The real question we have is "the clean EMG" and the neuro's she saw. . .but the last thing Carole would want to do right now is come to this board. So God speed, I pray it's a mistake. I pray that she doesn't have als. I pray that it is cured before anything bad happens. .

As far as BFS being increase risk of getting ALS? I hope and Pray not. . .

Did carole have BFS . . .I don't think so. . .thats the scariest part for all of us. .ALS is hard to diagnose and there will be mistakes. . .especially if you don't have the typical limb onset. . .
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Postby Pole on June 26th, 2003, 4:26 am

I dont think it is use to talk about Carols case. We don't know how she has been diagnosed with ALS. Maybe she visited this kind of neuro like Dave (this one who told him about atrophied tongue). And this poor neuro told her: "I dont want to scary you but you propably has ALS" or "I think it may be ALS" or something like that.
And Carol scared a lot (I can understand her of course) and told us that she had ALS.
Who knows? I hope I'm right.

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ALS

Postby KERRI on June 26th, 2003, 6:28 am

You know in thinking about it, I have decided, life is much to short, I read about a man who has had ALS for over 20 years, he was diagnosed in the early 80's, he said at first he thought the world was coming to an end, and then he realized the only way to live with ALS was to make it your partner and not your enemy. He meditated every day since then, and he believes that has saved his life, he has als not questions about it, but they say he has a very slow progressing for. I cannot worry about this anymore, and either can the rest of you, especially Dave, Arron, Jenn, these guys have all been twitching for a while, if you were diagnosed now this would be the slowest onset and very rare, like a doctor friend of mine explained, there are different forms of ALS, there are rapid onset forms that can kill in 18 months to three years and there are forms such as Steven Hawkins that do not kill the person quickly, and they say that mind set is the most important think, healthy thinking leads to a better fight in any disease.
Why do we worry, we really need to stop.

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Mayo clinic

Postby graberc on June 26th, 2003, 6:35 am

I read on the mayo clinic when someone asked about people having als (like good old Hawking) for 20+ years.

They said something to the tune. . it may not be als. . .at least the same as the one that kills in 3. . .but we don't reallly have anything else to call it. . .


als is often only described as a progressive loss of muscle.. .but in reality that could be caused. . .by numerous diseases.
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