Diagnosed with BENIGN MND

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Re: Diagnosed with BENIGN MND

Postby TwitchyDoc on June 29th, 2014, 11:29 am

J4son, yeah I see your point, these differences I spotted too. But in the article linked (and somewhere else where he described his story, I guess it was FB) he said he had started to get twitches and cramps shortly before they got married in 2009, i.e. 3 years before it progressed and the weight loss occurred.
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Re: Diagnosed with BENIGN MND

Postby DaveCH on June 29th, 2014, 11:40 am

I had my 8 month check up with my neuro last week and had a discussion similar to this story with him. There was a guy in the local press who had bad cramps for a year and then twitching. Like this story he didn't go to a neuro for a year but anyway my neuro said cramping such as that would be a concern to him and he would keep an eye on the patient so different to someone with only twitching. He said the description of symptons when they started etc is so important when a neuro asses the patient
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Re: Diagnosed with BENIGN MND

Postby TwitchyDoc on June 29th, 2014, 11:47 am

DaveCH: That is true. Cramps are generally known to occur in MND often as a very first sign, representing the beginning of denervation (denervated muscles are hyperexcitable and very prone to cramps), i.e. months before clinical weakness is present. If you remember this other unfortunate case on this forum (I cannot remember the nickname now), he too started with cramps in his hands.

So yes, you are right (as well for J4son) but I still do not find that post really a positive and reassuring one. But on the other hand, I am sure that was not Raindog's intention.
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Re: Diagnosed with BENIGN MND

Postby garym on June 29th, 2014, 12:01 pm

TwitchyDoc wrote:J4son, yeah I see your point, these differences I spotted too. But in the article linked (and somewhere else where he described his story, I guess it was FB) he said he had started to get twitches and cramps shortly before they got married in 2009, i.e. 3 years before it progressed and the weight loss occurred.


He also said that he worked out 4 times a week....as a former college ball player and someone that has spent a bunch of time in the gym, it is very common to cramp after working out. I can see how one could look back and confuse those cramps for disease process even if they were not related. I have experienced severe cramping after workouts my entire life, but the difference now is that I get them for no apparent reason. If I had als, I could say that I had been experiencing cramping for years prior to onset, but that clearly wouldn't be related. That said, I do have something in my muscles that has always caused me to be more prone to cramping.

This is a tragic case, but one that something serious was suspected from the beginning. The doctors didn't dismiss Ian and stop looking for the cause of his sxs. Instead they embarked on a search for the cause of his sxs, even searching for cancer with a PET scan at one point, so they were clearly concerned for him....how many of us can say that the doctors were that concerned for us? There is a clear difference between us wanting to be tested for everything, due to our worry, and the doctors actually ordering tests because they were concerned.

I can see how this case raises concern among the new members here....heck, it is scary to think about the possibility, but at the end of the day, his case is much more complex than the rest of us and was from the beginning. There is almost always more to the story in these cases which cramping/fascics are the initial sx of als and it is never very long before the doctors become suspicious of other things at hand.

Take care,
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Re: Diagnosed with BENIGN MND

Postby garym on June 29th, 2014, 12:07 pm

TwitchyDoc wrote:but I still do not find that post really a positive and reassuring one.


I agree, not much positive or reassuring there....but also nothing for the newbies to panic about.

take care,
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Re: Diagnosed with BENIGN MND

Postby TwitchyDoc on June 29th, 2014, 12:28 pm

Gary, i agree. Just to add - he was getting cramps in neck, biceps etc. which is concerning and quite rare even after workout. I remember from the college that cramping in any proximal muscles suggest neurogennic patology. That matches with MND onset patters, where cramps precede the other symptoms by 10-14 months (Eisen, 1990).
On the other hand, there is BCFS, so it only adds more variables to the whole equation.
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Re: Diagnosed with BENIGN MND

Postby J4son on June 29th, 2014, 12:33 pm

TwitchyDoc wrote:J4son, yeah I see your point, these differences I spotted too. But in the article linked (and somewhere else where he described his story, I guess it was FB) he said he had started to get twitches and cramps shortly before they got married in 2009, i.e. 3 years before it progressed and the weight loss occurred.


So it means he is changing his story every time, because here in his first post here was crystal clear. Abnormal cramping started in March 2011 and onset of twitching in October/November 2011. I trust more what he wrote first hand here, than what a journalist quoted from him many years later…
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Re: Diagnosed with BENIGN MND

Postby TwitchyDoc on June 29th, 2014, 12:42 pm

J4son, I would not say he was changing the story, somewhere he wrote that it started before they got married (2009) but probably it was just mild or occassional. Anyway, cramps are mentioned first in either case. I feel really bad about chewing over his story as if it was some unknown case in a medical textbook, I cannot imagine the hell Ian has been through. I mean, we all have had a glimpse of what it probably feels like and some of us - like me - cannot still get over it. Lets leave this thread and in case of need, we could PM.
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Re: Diagnosed with BENIGN MND

Postby J4son on June 29th, 2014, 12:55 pm

TwitchyDoc wrote:J4son, I would not say he was changing the story, somewhere he wrote that it started before they got married (2009) but probably it was just mild or occassional. Anyway, cramps are mentioned first in either case. I feel really bad about chewing over his story as if it was some unknown case in a medical textbook, I cannot imagine the hell Ian has been through. I mean, we all have had a glimpse of what it probably feels like and some of us - like me - cannot still get over it. Lets leave this thread and in case of need, we could PM.


I totally agree with you here. When I read his story the first time months ago, I liked that guy; he had a very stoic way of facing adversity and a lot of dignity. I truly wish him the best, and I hope research especially those made on Stem Cells will give something promising soon so he can benefit from it.

I would like also to mention something else. Now I’m not a doctor, you’re the doctor here so I can be mistaken correct me if it’s the case. But I believe that while cramping is a symptom of BFS, it should always remain mild and in a normal range, otherwise we can’t speak about BFS anymore. If people start experiencing regular abnormal cramping, in completely unusual places like neck, thighs, biceps etc. if cramping becomes the main and major symptom with pain than can last for days like in Ian’s case, so BFS should be excluded. BFS is a syndrome where twitching not cramping is the main symptom. Otherwise it’s either MND, CFS (cramp fasciculation syndrome) or something else. Ian had never BFS, and he was never diagnosed with BFS. One of his neuro mentioned a possibility of BCFS, never of pure BFS. And from what I have read CFS remains rare compared to BFS.
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Re: Diagnosed with BENIGN MND

Postby TwitchyDoc on June 29th, 2014, 1:03 pm

Yes J4son, that is correct. Medical literature distincts between BFS and CFS/BCFS. But again it depends on the author, e.g. Eisen himself writes that benign fasciculations with cramps are rare and uncommon. On the other hand, with CFS, one could expect cramps similar to MND because probably the origin is the same or very similar.
It should be noted that documented cases of fasciculations progressing to MND (including Walton study and Carvalho's individual reports) were actually cases of BFCS with the pronounced cramping component.

But as the cramp-fasciculation syndrome is a well described entity, I would say it does not represent a higher risk itself, it is just more difficult to dinstiguish and possibly rarer than BFS.
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Re: Diagnosed with BENIGN MND

Postby J4son on June 29th, 2014, 1:26 pm

TwitchyDoc wrote: It should be noted that documented cases of fasciculations progressing to MND (including Walton study and Carvalho's individual reports) were actually cases of BFCS with the pronounced cramping component.
.



I think that even in Eisen’s famous 6.7% study, patients among the 6.7% where closer to CFS rather than BFS. This is a quote from “6.7%” study:

"Careful inquiry into the history of patients with ALS reveals that many notice fasciculations (usually with muscle cramps) for weeks, months, and rarely years before the onset of neurological deficit."

I’ve read also somewhere that with twitching alone ALS can be ruled out immediately after electrical and clinical diagnosis or after a few months without progressing symptoms, while in case of the presence of severe widespread cramping in unusual places the safe time-period becomes longer. Something like two years…
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Re: Diagnosed with BENIGN MND

Postby raindog on June 29th, 2014, 1:31 pm

J4son wrote:
TwitchyDoc wrote:J4son, yeah I see your point, these differences I spotted too. But in the article linked (and somewhere else where he described his story, I guess it was FB) he said he had started to get twitches and cramps shortly before they got married in 2009, i.e. 3 years before it progressed and the weight loss occurred.


So it means he is changing his story every time, because here in his first post here was crystal clear. Abnormal cramping started in March 2011 and onset of twitching in October/November 2011. I trust more what he wrote first hand here, than what a journalist quoted from him many years later…


I Wouldn't call 2 years many years later.

Nobody here should have any fears from this entire thread as it shows a person who had both upper and lower motor neurone signs on the first emg he had done, because we compared them word for word over the phone. My emg was exactly the same as Ian's but only in respect to the lower motor neurone signs all my upper motor neurone signs were clear from the outset and still remain clear. My Neuro says i have a lower motor neurone syndrome in the form as PNH and i believe him and moved on from any fears i had and got on living my life, which you should all do.

I fail to see how people here who have had normal clear EMG having anything to fear as you are still the normal man on the street with a percentage call of about 150,000/1 so does the man on the street go fretting about MND 24/7 I really think not and neither should you.

If Gary thinks this thread is counter productive then i wont take offence if he deletes it , but for me it reinforces just why i'm OK
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Re: Diagnosed with BENIGN MND

Postby TwitchyDoc on June 29th, 2014, 1:39 pm

Raindog, emg cannot pick up upper motor neuron signs, so you are talking about clinical? Maybe that is the piece of the puzzle we are missing here - I never know he had had any upper motor neuron signs. Thanks for bringing this point, that would explain a lot!
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Re: Diagnosed with BENIGN MND

Postby raindog on June 29th, 2014, 1:55 pm

TwitchyDoc wrote:Gary, i agree. Just to add - he was getting cramps in neck, biceps etc. which is concerning and quite rare even after workout. I remember from the college that cramping in any proximal muscles suggest neurogennic patology. That matches with MND onset patters, where cramps precede the other symptoms by 10-14 months (Eisen, 1990).
On the other hand, there is BCFS, so it only adds more variables to the whole equation.


i have had neck and jaw (when i yawn) cramping for years. I can put my wrist in palmer flexion then bring my arm up 90 degrees while i tense my biceps and induce a full on cramp not just in my bicep but also in my pronator teres , palmer longus and brachioradialis

Cramping is a very common condition and not anything to worry about it because its other things like atrophy and real weakness (not perceived ) that would be more concerning when associated with cramps and fasciculations.
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Re: Diagnosed with BENIGN MND

Postby TwitchyDoc on June 29th, 2014, 2:23 pm

Raindog, but you do not have typical BFS as your neuologist confirms some kind of benign lower motor neuron disorder with abnormal emg reading. So I would not count you as a bfs case from this perspective, no offence):) in that case cramps are expected.,

Could you elaborate on my previous post? I think it would clarify things ;)
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Re: Diagnosed with BENIGN MND

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