Bob Down South - One Year Plus Update

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Bob Down South - One Year Plus Update

Postby BobDownSouth on October 8th, 2012, 2:08 pm

Hello fellow fasciculators!

I last posted on this board regarding my case last winter (maybe January). I want to thank all of you who commented on my case as it helped keep me sane and give me hope during those early months of twitching when my spirits sank down. This is the only place I found where BFS is explained in any detail and experiences shared. My update starts just below.

To review, I started twitching in July 2011 at age 64. Symptoms intensified during the fall of 2011. My neurologist gave me 50-50 odds of BFS versus ALS. The Mayo Clinic specialist (in late Nov 2011) in Jacksonville, Florida, told me he thought I did not have ALS but in his written write-up left the door open to possible ALS. In Jan 2012 my local neurologist ran a few follow-up tests on me including one looking for muscle breakdown products in the blood, sometimes associated with ongoing ALS. All blood tests came back negative. Yea!!!

Since January 2012, my twitching continues to come and go. Some days it is stronger in the legs. Some days the arms or neck are active fasciculation sites. It can be scary at times and the cramps in legs and feet can be painful. The best news is that after about 15 months, I'm still able to walk over a mile as I need to, climb stairs, lift objects under 30 pounds, and able to swallow and talk normally. Most of the time, I sleep at least six hours per night. A year ago I sometimes slept only a few hours a night due to very active twitching. My weight has held pretty stable. Every day that passes I'm thankful to be able to do these simple tasks that so many take for granted.

It is hard to say where my twitching issues will lead. My condition at this point makes a BFS diagnosis look appropriate although my local neurologist won't rule out ALS for another four years.

Any comments are welcome!

Thanks and regards!
Bob Down South
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Re: Bob Down South - One Year Plus Update

Postby Ghayes420 on October 8th, 2012, 2:21 pm

Thanks for the update Bob! glad to hear you are doing well!

Kind Regards!
Greg
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Re: Bob Down South - One Year Plus Update

Postby tessa on October 8th, 2012, 2:23 pm

Glad you checked back in. I read your story and had often wondered what happened to you. I believe you should take great comfort in the fact you have no weakness 15 months later. As it has been said 100's of times a.l.s. does not hide and progresses rapidly. Best of luck to you and continue to check in.
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Re: Bob Down South - One Year Plus Update

Postby garym on October 8th, 2012, 3:04 pm

BobDownSouth wrote:It is hard to say where my twitching issues will lead. My condition at this point makes a BFS diagnosis look appropriate although my local neurologist won't rule out ALS for another four years.


Bob,

Great news. I'm very happy that things haven't progressed for you. To me, I would take comfort in the fact that despite what one or two studies have pointed out, the collective knowledge/experiences of this board and most recognized studies reveal that one year is adequate time to move on from the worries of als. In fact, while als cannot sometimes be ruled out for over a year, people with conditions other than benign fasciculations almost always have other more worrisome symptoms accompanying fasciculations within a year.

It is easy for me to sit at my desk, 9 years in, and say don't worry about what your neuro is saying and for you to forget about the four years he is talking about, but please don't let any fear of what might be consume your time in the here and now. Life is too short, and after one year of fasciculations without clinical weakness and no progression, I would personally bet you are just fine (in my thoroughly uninformed, and non-medical opinion :D ).

Thanks for the update!

Gary
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Re: Bob Down South - One Year Plus Update

Postby jerry2 on October 9th, 2012, 3:06 am

Why did the neuro said 4 more years to be sure? Isn't a year with twitching and no other symptoms like weakness ENOUGH to be 99.99% positive? Why 4 more years? Does your neuro know anybody who has fascisc for 4 years and then developed weakness. I didn't hear on such case ever.

I need some date that I can feel safe. Date that it is HIGLY UNUSUAL if not nearly impossible to have ALS with only twitching and other stuff as a symptom. I thought this was 3 months, later I found out it is 6 months, then a year, but whenever I reach that date somebody points out some neuro told more. And what, now I have to wait 4 years to be able to relieve myself?

This has or has not to do with me not having EMG, but the fact is if after xyz months without weakness mostly nobody has ALS, that is the best single point one has to stick in reasoning to himself. Because there IS such point. From what I read I thought it is somewhere between 3-6 months as the dying motor neurons in ALS can not continue working normally for 1 year without something else showing.

Why on earth would you need to wait to confirm it is not ALS 5 years. That statement is saying like one can twitch for 4,5 years and then develop weakness, which I think is NOT true.

And before you tell: Believe your neuro... I find that to some degree true. I mean, if I would believe him, I can have ALS and my hand is atrophied? Should I believe? If I believed neuro that Bob has, I should believe one can be cleared after 5 years only? Should I believe that?
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Re: Bob Down South - One Year Plus Update

Postby Seepi27 on October 10th, 2012, 8:16 am

BobDownSouth wrote:Hello fellow fasciculators!

I last posted on this board regarding my case last winter (maybe January). I want to thank all of you who commented on my case as it helped keep me sane and give me hope during those early months of twitching when my spirits sank down. This is the only place I found where BFS is explained in any detail and experiences shared. My update starts just below.

To review, I started twitching in July 2011 at age 64. Symptoms intensified during the fall of 2011. My neurologist gave me 50-50 odds of BFS versus ALS. The Mayo Clinic specialist (in late Nov 2011) in Jacksonville, Florida, told me he thought I did not have ALS but in his written write-up left the door open to possible ALS. In Jan 2012 my local neurologist ran a few follow-up tests on me including one looking for muscle breakdown products in the blood, sometimes associated with ongoing ALS. All blood tests came back negative. Yea!!!

Since January 2012, my twitching continues to come and go. Some days it is stronger in the legs. Some days the arms or neck are active fasciculation sites. It can be scary at times and the cramps in legs and feet can be painful. The best news is that after about 15 months, I'm still able to walk over a mile as I need to, climb stairs, lift objects under 30 pounds, and able to swallow and talk normally. Most of the time, I sleep at least six hours per night. A year ago I sometimes slept only a few hours a night due to very active twitching. My weight has held pretty stable. Every day that passes I'm thankful to be able to do these simple tasks that so many take for granted.

It is hard to say where my twitching issues will lead. My condition at this point makes a BFS diagnosis look appropriate although my local neurologist won't rule out ALS for another four years.

Any comments are welcome!

Thanks and regards!
Bob Down South


Did you have an EMG?

And where does your local neuro get his information from? You need to wait five years before they'll rule out ALS? WTF?
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Re: Bob Down South - One Year Plus Update

Postby Lasszucken on October 11th, 2012, 2:48 am

my local neurologist won't rule out ALS for another four years.

I think this is *beep*. I never read or heard about anyone with only twitches (and maybe cramps) for 4 years and then developing an ALS.
The only thing i can think of is that an EMG showed some abnormality or there are other symptons pointing to ALS.
If been told by quite a few neurologist that never ever they have had a person with only twitching having ALS, they allways also had other symptoms, like weakness.
Also i've been told that 6 months without developing any other symptoms puts you on the safe side, some neuros even said three months are enough to be sure.

Greetings,
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Re: Bob Down South - One Year Plus Update

Postby BobDownSouth on October 14th, 2012, 1:19 pm

My neuro said five years to be sure. My EMG showed irregularities that he said could point to ALS or BFS. After about six months of twitching, a blood test showed no muscle breakdown which he (and I) found encouraging. The Mayo neuro wanted me to have another EMG performed at the Mayo. I decided against it as I didn't see that it would show me anything that would help me get better, only possibly prove I had ALS.
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Re: Bob Down South - One Year Plus Update

Postby TwitchyDoc on October 14th, 2012, 1:42 pm

Seepi, Lasszucken: This 4-5 years comes (I am quite sure) from the Walton study because of their 4 cases, that is what they suggested. So the local neurologists most likely read this and now does his job accordingly.
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Re: Bob Down South - One Year Plus Update

Postby bobajojo on October 14th, 2012, 1:49 pm

Docen,
Both Mayo and Mass General say that its ridiculous to think that we need to be followed for that long. Bob mentioned that he had abnormalities on his EMG. Its much more likely THAT is the reason he has to follow up and nothing to do with the Walton study. Just my opinion. -Matt
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Re: Bob Down South - One Year Plus Update

Postby jerry2 on October 14th, 2012, 1:55 pm

Yes I think you are right Matt. I am so sorry he can not tell us what are the abnormalities. I have not heard of abnormalities that can be either BFS or ALS. Maybe local entrapements? Isn't a clean EMG = BFS and a dirty EMG = a lot of possible reasons?
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Re: Bob Down South - One Year Plus Update

Postby TwitchyDoc on October 14th, 2012, 2:02 pm

Matt, that is possible (but if the EMG is not clear, why will he wait just 4-5 years?). However, I know that quite a lot of neurologists are now following Walton study conclusion because they know nothing about BFS (except for very good ones, e.g. Mayo in US as you mentioned) and for them it is no big deal, they just monitor the patient each 6-12 months. Remember that patient unaware of possible ALS diagnosis thinks about that like it is routine.
There is no such a thing on EMG which is either ALS or BFS..except for fasciculations themselves (fasciculation potencials). Some doctors still consider EMG abnormal if there are fasciculations.
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Re: Bob Down South - One Year Plus Update

Postby wjjw on October 15th, 2012, 12:54 pm

TwitchyDoc wrote:However, I know that quite a lot of neurologists are now following Walton study conclusion

Just curious--how do you know that? How many neurologists did you survey to determine this?

Cheers,
Bill
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Re: Bob Down South - One Year Plus Update

Postby Ghayes420 on October 16th, 2012, 1:07 pm

bobajojo wrote:Docen,
Both Mayo and Mass General say that its ridiculous to think that we need to be followed for that long. Bob mentioned that he had abnormalities on his EMG. Its much more likely THAT is the reason he has to follow up and nothing to do with the Walton study. Just my opinion. -Matt



Docen, I am quite too familiar with the Walton study unfortunately. I brought a copy of the report with me to Forbes Norris ALS Research center where I saw the top two nuerologists in the field of ALS, including the guy who has had 30+ yrs of clinical ALS experience. They concured with the above, that 3yrs is entirely too long. They once followed a patient for 1.5 years "longer than they would have expected." However this person had a deficit on their initial clinical exam that gave them a good idea of what was to come. They claimed that often if the person has a distinct problem on the clinical they need to be watched, and sometimes they do go on to MND, but sometimes, even these oddball cases (i.e. see above) do not go on to anything sinister.

wjjw wrote:
TwitchyDoc wrote:However, I know that quite a lot of neurologists are now following Walton study conclusion

Just curious--how do you know that? How many neurologists did you survey to determine this?


Also, I agree with Bill here. How are you sure that this new criteria based on that single case study is being employeed into the workings of neurologists in your area? I discussed the new El Escoral criteria with the ALS guru at Forbes and he kind of scoffed at it. "somebody trying to make a name for themselves." They dont even use the newer high pass filter that is recommended. At first this worried me, but then I read more on the history of these two experts I saw and realized that it is tough to question 45+ years of combined clinical experince in only dealing with MND, not general neurology.
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