ALS Related ?

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

Please use this forum to post give and recieve encoragement and reassurance from sharing the trials and triumphs you have faced.

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Postby fabfab on January 10th, 2005, 5:09 pm

Hi -
Where did you find this study ?
What does it tell exactly ?
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Postby TMcMahon on January 10th, 2005, 5:21 pm

The studies are discussed in detail between the members here over the last 2 years. The hallmark study was done at the Mayo Clinic which found fasciculations w/ clean emg means no chance of ALS. A second study out of either Canada or England found a 6.7% incidence in the development of ALS w/ claimed presenting symptom of twitching. The criticism of this study was that there was no mention by the researchers of initial abnormal emg findings on this 6.7% nor whther they had other clinical signs at time of initial exam. You can find all the discussions by starting your search w/"Mayo".
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Postby fabfab on January 11th, 2005, 1:39 am

Ok thanks.
Seems I haven't been there for such a long time after all !
The study you mention is quite frightening in a sense - as there is still a risk for someone with fascs and no EMG to get the f****** disease.
However I've never seen a case here.
And you can take comfort in the fact that (if you to take things litteraly) if no other signs show after 13.6 months, you're safe ! Which is more than your case, if i'm correct.
Gosh. My fascs started in the beginning of july. Does that mean I'll have to wait 7 months more before feeling totally relaxed ?
Hope you're allright.
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Postby TMcMahon on January 11th, 2005, 2:16 am

Words of encouragement from the ultimate worrier.

Fasiculations that start between the thumb and index finger/ or eye lid are the most common sites for BFS and according to my neurologist at Stanford are never ever related to ALS no matter where the fasiculations ultimately travel to. Mine started in thumb/index finger 3 years ago, stopped, migrated to the other thumb 6 motnths later, stopped and settled into the eye lid in June 03 which is the final straw that led me to panic, web site research neurosis and a subsequent visit to 2 neurologists. The most common initial benign fasic locations at the beginning are thumb, eye lid and legs- all increased by stress. By the way, my neurologist who was trained at the NIH for neuromuscular disorders told me he "gaurunteed" I did not have ALS, and with that told me to direct my attention to a psychiatist and to get a life. This was in May 04. At the present time he is sick of my new theories, and this is so even though we have worked together several times in the past as I have had him evaluate neurological cases for me as I am involved in the medical legal field with a little medical knowledge that makes me dangerous particularly to my sanity..
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Postby Pasics Pete on January 11th, 2005, 5:29 am

TMcMahon wrote:Words of encouragement from the ultimate worrier.
...I am involved in the medical legal field with a little medical knowledge that makes me dangerous particularly to my sanity..


I had to chuckle at that remark. I just dropped out of nursing school (and I'm 46 years old) after one semester in spite of flawless grades. I just couldn't take the health anxiety it caused.
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Postby dave y on January 13th, 2005, 4:02 am

TMcMahon wrote:I guess my angst was/is increased when I read the back and forth comments comparing the Mayo study to the Canadian/English study (6.7% w/ initial fasiculations only, developed ALS) and one of the concluding remarks concerned "caution" in diagnosing BFS for those presenting with only fasiculations and a family history of ALS- which is me...


With respect, you're misinterpreting the Canadian study. It does not show that 6.7% of people with fasciculations developed ALS--it states 6.7% of people with ALS reported (to that clinic) with twitching as their first symptom. A different, similar study showed 3% of PALS presenting with twitching as the first symptom.

The Mayo and the Canadian paper do not conlflict at all. In fact, when the Mayo paper was published, the authors of the Canadian study chimed in to point out their findings, but they also said at the end of their comments that their findinds were consistent with the Mayo's findings (that nobody with twitching who has passed a clean EMG and clinical exam is reported to have later developed ALS or neuromuscular disease).

In reality, far far fewer than 6.7% of people who report with twitching and no other MND symptoms turn out to have ALS. It is a rare occurance.
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Postby fabfab on January 13th, 2005, 4:24 am

"In reality, far far fewer than 6.7% of people who report with twitching and no other MND symptoms turn out to have ALS. It is a rare occurance."

With all due respect, how do you know that ?
Just curious...
:lol:
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Why does it matter?

Postby Davey on January 13th, 2005, 8:40 pm

Why does it matter? Why are we parsing 6.7%? We should all just accept our diagnosis and get on with our lives. All this worrying is self-destructive and hurts not only ourselves, but screws up our outlook on life and our relationships with the ones we love.

So the doctor said no ALS. Accept it. Get on living. Stop obsessing about it. Embrace your BFS and your inner twitchiness. Don't let it stop you from enjoying your life. Sure, it can sometimes hurt, tingle, spasm, cramp, etc., but you can still get around. You aren't paralyzed! (Unless you let fear paralyze you.) Why should you fear death tomorrow so much that you forget about living TODAY!

If your doctor told you that you had ALS, would that be bad? You have been given a gift. You would know that your days are numbered, and you have a pretty good idea about how many are left. You would have time to make sure that your personal matters were settled. You could plan your own funeral. You could cherish your remaining days with loved ones, not sweating the small stuff and petty arguments because you now know what is really important. You could say goodbye to loved ones and share the end of your life with them. Heck, you could even marvel at the amazingly screwy biological process that was slowly killing off your motor neurons. You don't have pancreatic cancer, so your not in pain, vomiting and wretching from some chemotherapy that isn't going to help anyhow. Count your blessings.

Isn't that better than a sudden heart attack, stroke, accident, or gunshot that wipes you off the face of the earth in minutes? No chance to say goodbye, to tell loved ones how much you really care. No chance to right the wrongs you have done. It's over in the blink of an eye. Zip, Zap, and you're done.

I don't want to sound insensitive or glib, but perhaps we need a little "tough love" here. I think it is time for a lot of us to take a serious look at ourselves in the mirror. Do you want to subjugate yourself to your fear, a phantom enemy that exists only in your head? Or do you want to take control of your life and abrogate fear? Do you want to cower in the face of death, or face it with courage and laugh at it?

Okay, I'm off of my soapbox.

:x
Cheers,

Dave

Proud sufferer of Cramp-Fasciculation Syndrome since June 2001.

"Do not fear death tomorrow so much that you forget to live today."
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Postby TMcMahon on January 13th, 2005, 11:56 pm

Wow. You put it all into perpective for me. What was I thinkinking of?Guess you were never where I was and figured it out so easily, unlike myself. Sorry for the questions, Just kinda thought since a father died of ALS and having the symptoms and all- a little freak out for a time would be normaland this would be a place to vent. Just wondering why you joined this group? Thanks for the encouragement.
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An apology

Postby Davey on January 14th, 2005, 2:38 pm

TMcMahon -

I am sorry that my comments were offensive to you. Given your situation, they were insensitive and in poor taste. I imagine that others were equally aghast at my post and not too happy to say the least. So let me offer my sincere and deepest apologies for my insensitivity and caustic remarks. They were not intended to offend. But like Howard Dean screaming after a Democratic primary loss, I have come off like a raving lunatic.

So, may I offer some words of comfort for you.

You said that your father started deteriorating in his 70's. The average age of ALS onset is about 55, and people with the inherited form typically develop symptoms earlier (about 45). There is quite of variety of among the inherited forms of ALS, but only ~10% of ALS cases are attributed to inherited forms. That makes an incidence rate of about 2 in a million. Based on this, your father's ALS is likely the sporadic variety.

Information about hereditary ALS

Your first symptoms appeared in September 2003. That is over 15 months ago. The Canadian study found that the average age of onset of other symptoms of those 6.7% was not more than a few months. Now 6.7% of 0.00002 is 0.00000134. That's 1.3 per million people per year, which is a pretty small number. So if you are one of these, then it is a dubious way of being "one in a million."

You went to see a neurologist at the Stanford Medical Center. That hospital is one of the best in the country. Therefore, you can have confidence in the diagnosis. Remember, it is the variation in reflexes that indicates problems more so than just brisk reflexes. This is a quote from New York University's Neurology webpage:

It is key to compare the strength of reflexes elicited with each other. A finding of 3+, brisk reflexes throughout all extremities is a much less significant finding than that of a person with all 2+, normal reflexes, and a 1+, diminished left ankle reflex suggesting a distinct lesion.


You can see this at The Precise Neurological Exam.

During a simple neurological exam, other signs of motor dysfunction are looked for, like clonus (oscillations in the reflex response). If these are suggestive of problems, the doctor will do further testing like EMG, NCV, etc.

Since you live close to Stanford University (I am assuming), you can visit the medical library. You could go and photocopy the papers yourself. They are:

Blexrud, M. D., A. J. Windebank, and J. R. Daube. Long-term follow-up of 121 patients with benign fasciculations, Annals of Neurology, 34 (4), 622 - 625, Oct. 1993.

Eisen, A. and H. Stewart, Comment: Not-so benign fasciculation, Annals of Neurology, 35 (3), 375, Mar. 1994.

Blexrud, M. D., A. J. Windebank, and J. R. Daube. Reply: Not-so benign fasciculation, Annals of Neurology, 35 (3), 375-376, Mar. 1994.

There are other interesting references to articles floating around on this website as well. There is quite a discussion about the autoimmune origin of peripheral nerve hyperexcitability in Symptom Management. Given my thyroid disease, it is a discussion that hits me close to home. Maybe we could get John V to start a references page. I have access to many recent publications electronically, so I can download them as pdf files and send them to anyone who wants them. Unfortunately, these articles are too early and don't appear online in pdf form.

I cannot offer much more than this right now to try to help alleviate your fear. In the end, that must come from within. My now-infamous previous post was an attempt (albeit a pretty crappy and insensitive attempt) to motivate not just you, but others as well, to start thinking about the wonderous gift of life that we all have. We are only alive for a short time and it seems to me a shame that many are so worried that it robs us of this time.

Good luck.
Cheers,

Dave

Proud sufferer of Cramp-Fasciculation Syndrome since June 2001.

"Do not fear death tomorrow so much that you forget to live today."
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Postby dave y on January 14th, 2005, 8:03 pm

TmcMahon,

while ago someone at Braintalk contacted an author of the 6.7% study and asked about EMG. As I recall, he was told all of the 6.7% had abnormal EMGs.

Additionally, the citations listed in Davey's post are, if I remember correctly, the 6.7% authors responding to the Mayo study. In one of the back-and-forths, the 6.7% authors agreed with the findings of the Mayo study (as in that has been their experience to regarding EMGs, clinical exams and benign dx's of fasciculations).

And well perhaps Davey was a bit gruff but he was right. Problem is there are many "right" perspectives on this. Sometimes it takes a jolt to snap out of what I like to call this--recreational paranoia.

Your fears are understandable, but not justified by evidence. I think it's clear you don't have ALS. Like me, you're going to have to decide over and over again whether you want to live one long life or die a thousand deaths.
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Postby TMcMahon on January 14th, 2005, 10:38 pm

You are right on the money. Just thought that as a member for a sum total of one week, with the unusual circumstance of ALS in my family, and given the longevity of most members who still write about their fears years later-I might be given some slack- say a hall pass for at least two weeks before I am told to snap out of it and get a life.

I am better now.
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Postby amy_twitch on January 14th, 2005, 11:04 pm

I'm impressed by this conversation. TMcMahon, I think I speak for everyone here when I say that you can have all the hall passes you need for as long as you need them. Davey's posts were well intended, and his follow up to you was one of the most well thought out posts I've seen on here.

The most beautiful thing about finding this site is that 'Ah-hah' moment you finally experience where you decide to turn off the fear-switch. A ton of us took a long time to get to that point--and many are still getting there. Those of us who have had that moment tend to want to share it emphatically with other newcomers to get them over the hump that much faster. It pains me when I see people on here struggling with fear and anxiety (because I've been there--and I wasted way too much time there). Like Davey, I have also been chided on here for being 'too positive' about BFS in the past. I took it in stride though--as I'm sure Davey does, because everyone here knows that each person has their own journey to get to that peaceful place where BFS just become part of your life without consuming any more of your fears. As long as we're twitching, there's the chance that we'll keep slipping back into a stage of fear and worry.

Although my symptoms are drastically reduced, I find that coming to this site each day keeps me strong and keeps my mind in the right place.

This site is about unconditional support--and there's enormous amounts of it here.

I'm glad to hear you're feeling better TMcMahon. Though I'm not really part of it--the latter part of this conversation lifted me up tonight. Davey, I like your Howard Dean reference---I have to laugh every time I get that image in my head of him clench-fisted and screaming "YEEEAWWW".

Good night all--
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This is an interesting thread....

Postby lots of girls here on January 15th, 2005, 1:00 pm

For those who responded to this thread ... Just want to say that it's nice to see so many well written & intelligent responses. This thread is full of helpful data as well as some great non-scientific comments. I also am glad no one is "stomping off and leaving the boards" because they didn't like the responses they got. Such a rational group !!! Too bad we couldn't apply that rationality to our BFS symptoms. Have a great weekend!!
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Postby Roger G. on January 15th, 2005, 1:59 pm

Not much more I can add. Two things; One, be carefull with the meds. Two, read the article I posted under the symptoms management forum,It may be of some help. I do say you sound like classic BFS. So hang tough,And we will all be here for you! :wink:
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