Page 7 of 9

Re: Diagnosed with BENIGN MND

PostPosted: July 1st, 2014, 8:21 am
by leroyb
Read that story on the mail website and remembered instantly his post here. My heart goes out to him and his family.

To echo what others have said and this has happened before too: this thread is not the place to pick apart the posts for clues about why his case was different so that we can all rest easier.

Re: Diagnosed with BENIGN MND

PostPosted: July 5th, 2014, 8:35 am
by RobJ
It's a horrible disease, absolutely horrible, but at least he has time to organize his finances and properly say good bye to his family.

Lot's of anxiety in posts. I don't think most are accurate. Cramping is cramping is cramping is cramping. My son cramps in his hands, my sister cramps in her throat/neck, my father cramps in his stomach, my mom cramps in her calves, my niece cramps in her toes and feet, my friends cramp in tri-ceps, bi-ceps, neck, etc. Some last for seconds some for minutes....some pain for seconds others for days....I cramp....i go years with little to no cramps, then I go periods where I cramp when I move, used to cramp a lot when younger, today not so much......Twitching before weakness, twitching during weakness, twitching after about people that twitched for years no weakness then all of a sudden foot drop.....some people with weakness, no twitching.....some times people cramp during twitching others do not.

Everyone is different. Every case is different. Have you read the Peter Frates story? Slight changes over years, noticed he wasn't hitting the ball as often, breaking bats when he did hit the ball, batting average diminished...then inside fast ball hit his wrist and wrist was never right again, couldn't reinervate those muscles. They died, started the process of diagnosis for him.

All different except for one thing, WEAKNESS.......WEAKNESS........WEAKNESS....if you wake and you are dragging your foot, you can't click that clicker anymore, can't carry a gallon of milk, can't walk those concerned...other than that enjoy life.

Been twitching 20+ years, high CPK for 20+ years, cramping for all long as I can remember.......Still here, still OK, no weakness....ENJOY!

Re: Diagnosed with BENIGN MND

PostPosted: July 7th, 2014, 8:09 pm
by veryworried123
for my sanity and for my sleep i don't want to read this entire thread as it did get a few of us nervous including myself

so what are we saying here in summary?

that we had someone with crmaping, then twitching for years prior to MND?


that even the first emg done (not sure when it was) showed concerning signs of both upper and lower signs of MND?

also can someone explain how this could be listed as benignn?

does someone have a summary

sorry i sure i could find the answers if a read through it all but not at the cost of my failing into my old state of worrying again

thanks again

Re: Diagnosed with BENIGN MND

PostPosted: July 7th, 2014, 10:50 pm
by Yuliasir
in a summary we have a person who was really used to have cramps and pains in the arms and neck for years and years (maybe we all have them sometimes, me too) but when they become intense, non-stop etc. he went for tests and it was first found he has both signs of radiculopathy (surely who has not in their 40th) but symptomes went worse and finally MND specialist had found that this is MND, unfortunately not as much benign as it was supposed initially. And yes we have a user named raindog who has also signs of denervation and lower motor neurons damage on his EMG for already 8 years. He has condition which could be called benign MND. He says he has heavy pain in the legs and loss of knee and ankle reflexes but he is able to walk etc.

a summary of summary does not differ from any medical consensus: Ian had STRANGE and non-typical symptomes from the very beginning, most probably caused by radiculopathy, but when it had came to MND process, it was spotted by means of EMG in a typical time and fashion.
So still if you have widespread twitches, no weakness and clean EMG within 6-8 months of starting to think therer is something strange with you - you are Ok.

Re: Diagnosed with BENIGN MND

PostPosted: July 7th, 2014, 11:09 pm
by veryworried123
I guess maybe that's where I get a bit confused

Are we staying for years prior to the MND he had a clean emg and just twitching and cramping?
Was there any weakness during the twitching and cramping


Re: Diagnosed with BENIGN MND

PostPosted: July 7th, 2014, 11:33 pm
by Yuliasir
holy cow I do not know really if he had clean EMG in years and years and if he really had ANY EMG before he started to feel that extreme and constant cramping interferes his life to a point he had to come to doctors.
I do not know if Ian had twitching at all - seems like cramps and pains werenumber one for him.
nope he had not weakness initially. but he started to have it quite soon after he was diagnosed with MND - in about a few months as far as I can understand from the article which was a reason for raindog to refresh the post.

so he had clear electromuscular signs consistent with MND and his first clinical signs were extreme cramping in neck and arms PLUS high CPK PLUS evident rapid loss of weight PLUS bad EMG.

hope this can help.

In Ian's story there was no situation like we have in most of our fellows: a hell of diffuse symptomes here there everywhere, no signs of MND damage on EMG, normal or minimally changed bloodwork, and nothing really preventing from using limbs and of course none of BFSers, even those who twitches for 18 years as Nvyolet or Garym, has no disability leading to a wheelchair in 2 years after diagnosis as it had happened to Ian.

Re: Diagnosed with BENIGN MND

PostPosted: July 8th, 2014, 2:23 am
by TwitchyDoc
Yulia, I would not agree in several points - his case was not that difficult.

Ian mentioned twitching 12 months and cramps 18 months before the onset of symptoms. During that time, he had still 5/5 power. His first EMG found abnormalities with arms, neck and lower back (most likely paraspinal) nerves. It was not said what the findings was. Anyway, his EMG/NVC concluded multilevel lumbar and cervical radiculopathy - well, that is quite suspicious. Multilevel and at the same time in two spinal segments...what are the odds?
And most importantly, Ian had hyperreflexia and Babinsky sign, which he did not mention in the post but told Raindog later.

Re: Diagnosed with BENIGN MND

PostPosted: July 8th, 2014, 3:05 am
by Yuliasir
So stll anyway Ian had eough 'material' for neurologists to work on - both presented clinically as pathological refelexes and hyperreflexia, unusual pattern of cramping etc., plus laboratory abnormalities such as elevated CPK along with visible muscle wasting, and electrophysiological signs beyond slignt abnormalities some of us may demonstrate due to age or trauma.

that is what we may remember and resolve as dry residual of this sad case.

Re: Diagnosed with BENIGN MND

PostPosted: July 8th, 2014, 9:14 am
by TwitchyDoc
Yulia, exactly my point. The only thing that I did not understand was how he could have been diagnosed with BFCS with upper motor neuron signs. Maybe they found it I said earlier, i do not think it is proper with respect to Ian to chew over his story, examine everything he said and question any discrepancy..

Re: Diagnosed with BENIGN MND

PostPosted: July 8th, 2014, 9:20 am
by veryworried123
So is this a situation where twitching and cramping proceeded weakness buy up to 18 months thus proving the 6-8 month time frame we discuss as incorrect?

Or did the EMG pick up all of the sign during the first 18 months


Re: Diagnosed with BENIGN MND

PostPosted: July 8th, 2014, 9:36 am
by TwitchyDoc
The 8 months timeframe is the average, sufficient for most cases. This is medicine, not IT or mathematics - there are no 'nevers' or 'always'.
As he was first diagnosed with BFCS, it is obvious they did not find his results concerning enough.
Please read Ian's first post, he described his journey well enough.

Re: Diagnosed with BENIGN MND

PostPosted: July 8th, 2014, 10:01 am
by veryworried123
I did read it and that's what's concerning
Given that 18 months later yes there was some findings on the emg but nothing to suggested MND rather a mix of several issues such as anxiety and cramping syndrome etc

Not sure when the hyperflexia and babinski was detected

Re: Diagnosed with BENIGN MND

PostPosted: July 8th, 2014, 10:17 am
by TwitchyDoc
Yes, that is not clear. But logically it had to be later as with these findings, nobody would diagnose BCFS.

Re: Diagnosed with BENIGN MND

PostPosted: July 8th, 2014, 12:28 pm
by garym
TwitchyDoc wrote:Yes, that is not clear. But logically it had to be later as with these findings, nobody would diagnose BCFS.

I don't think he was ever given a dx of bcfs unless you are reading something I'm his original post, he stated the following:

"Impression: I think his symptoms are a mixture of cervical and spinal radiculopathy, anxiety and cramping Fasciculation syndrome."

again, unless I'm missing something, that isn't a dx, but rather a supposition.

Re: Diagnosed with BENIGN MND

PostPosted: July 8th, 2014, 12:42 pm
by veryworried123
i kinda of wish i didn't read this / stayed of here

does anyone know when the emg / nero exam was done? what's concerning is that it appears it was done after a year of cramping and twitching?

Does anyone know when the hyperflexia and babinski was detected? was is during the first exam after the 12 month mark...maybe Raindog does

also i'm assuming the 40lbs of weight loss was muscle lose but still no weakness?