Diagnosed with BENIGN MND

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Re: Diagnosed with BENIGN MND

Postby raindog on June 29th, 2014, 2:26 pm

TwitchyDoc wrote: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!


Whereas my abnormal emg just was in both lower limbs Ian had abnormalities in his arms and paraspinal muscles as well as his legs and thigh it was also noted he had hyperactive reflexes whereas mine are absent at knee and ankle, my Babinski is down, but ians was upward .
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Re: Diagnosed with BENIGN MND

Postby TwitchyDoc on June 29th, 2014, 3:15 pm

Thanks, so there was hyperreflexia - that is new for me.

Upper motor neurons do not refer to the upper/lower part of the body but rather to their origin - UMN originates in the brain and go down to LMN - all muscles (including tongue) are innervated through LMN. But that is just to make things clearer ;)
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Re: Diagnosed with BENIGN MND

Postby garym on June 29th, 2014, 9:35 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've been getting cramps under my chin, in my neck, and just about everywhere else for years.....under the chin since I was about 10-12 years old. The last ten years have been crazy for me, in regards to cramps, but it is just part of my life now. Bicep cramps and forearm cramps were a regular thing back in my workout days however.
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Re: Diagnosed with BENIGN MND

Postby nrwtwitcher on June 30th, 2014, 1:49 am

J4son wrote:
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…


That was a very horrible comment for people like me with BFCS (only since 9 months) with several cramps and, in my case, with high anxiety. I do not understand why to post such a comment, maybe it is reassuring for you J4son, but in my case, where I hoped to become in a really safe zone after 8 months, it is terrifying. I cried the last night during the worse cramps in my feet, lasting the whole night. I am not reading on als sides because I do not want to read such horrible comments.
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Re: Diagnosed with BENIGN MND

Postby nrwtwitcher on June 30th, 2014, 1:53 am

My neuros told me, that BFCS never progress into MND... They told me, that my risk is the same than any other healthy people.
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Re: Diagnosed with BENIGN MND

Postby TwitchyDoc on June 30th, 2014, 2:08 am

nrwtwitcher, J4son only commented what is the common knowledge among MND specialist and quoted official papers...but you mentioned you were having cramps in your feet - that is normal!

Cramps in feet or calves are quite common and should not worry you. His comment was aimed at cramps that are regarded as concerning, i.e. cramps affecting unusual places but it still does not mean that you are going to develop MND. As Gary confirmed, there are conditions where the cramps are common and still the condition is benign but you cannot blame the neurologists for being cautious - both fasciculations and cramps appear in MNDs and hence it is clear that patients with both of these phenomena will be followed up more cautiously.
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Re: Diagnosed with BENIGN MND

Postby nrwtwitcher on June 30th, 2014, 2:43 am

ok, bfcs sometimes seems difficult to understand...
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Re: Diagnosed with BENIGN MND

Postby Antologia on June 30th, 2014, 2:51 am

I got really scared when reading this thread. Of course I try to be realistic and try not to freak out. I know the chance that this happens in someone with BFS is very rare, but... The more I read about it, the more I learn that the onset periode can be very different in anyone. MOSTLY you are safe after 6 months of twitching and no other signs. But sometimes you are not....

Those situations are very very rare. But what gets me freaking out is that I don't know if I will be that person with that rare type of onset of ALS. Do you know what I mean? This is what happens in my head. What if I'm the one that has that slow and rare type of onset? It could be...?

I just hate that there ins't a bloodtest or something for ALS. I read so many stories of people with ALS having 1 or 2 normal EMG's and then the 3 is suddenly dirty. How can I be 100% sure I don't have ALS, when I only had 1 EMG?

Internet is bad, because you can find all the worst case scenario's now. 40 years ago when you were twitching you just new nothing, the docter told you you had bfs and you stopped worrying....
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Re: Diagnosed with BENIGN MND

Postby TwitchyDoc on June 30th, 2014, 3:01 am

nwtwitcher, I do not get why you say you need to wait for years - you have cramps in feet and twitches, you are OK. My wife gets feet cramps daily, I told you it is normal.

Antologia - I do understand your fear, believe me. Remember that in these uncommon, unfortuanate cases there usually are some clues allowing distinction from clear BFS. Poor Ian had the weight loss, hyperreflexia and positive Babinsky which is a hard (reliable) sign of upper motor neuron abrnomality. The other guy on this forum who developed ALS started with hand cramps and his doctor mentioned MND during his very first clinical examination because of subclinical finger weakness.

So at the closer look, there are differences, it just might be hard to spot them. In addition, the stories on the Internet lack these details and you only get a part of the story the patient considers important but never the whole picture.
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Re: Diagnosed with BENIGN MND

Postby nrwtwitcher on June 30th, 2014, 3:14 am

Yes Antologia, I have read those storys before, too. I was in 3 neuromusculare ambulance and had 4 EMGs. All those specialists told me that it is not necessary to come back. The neuro at the neuromusculare ambulance (specialist in neuromusculare diseases) told me that he had never seen a case where a bfcs is progressed into MND.
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Re: Diagnosed with BENIGN MND

Postby TwitchyDoc on June 30th, 2014, 3:16 am

Folks, I will post it separately to make it clear:

During the exam, doctors noted that Ian had hyperreflexia and positive Babinsky sign, which is a clear sign of upper motor neuron pathology. That means he did not have only fasciculations but fasciculations with upper motor neuron signs!

I wish him the best and will leave this thread finally - as I said, I find it difficult to discuss in his own topic, elaborating and chewing over on what he said.

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Re: Diagnosed with BENIGN MND

Postby nrwtwitcher on June 30th, 2014, 3:20 am

sorry all for this depressed post... I am out of my mind today, I have not slept last night, now I am sitting in my office with a really breakdown... Sorry, I will see how I feel tomorrow, today in addition with cramps that lasts for hours, I am a nervous wreck.
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Re: Diagnosed with BENIGN MND

Postby nrwtwitcher on June 30th, 2014, 3:24 am

TwitchyDoc wrote:Folks, I will post it separately to make it clear:

During the exam, doctors noted that Ian had hyperreflexia and positive Babinsky sign, which is a clear sign of upper motor neuron pathology. That means he did not have only fasciculations but fasciculations with upper motor neuron signs!

I wish him the best and will leave this thread finally - as I said, I find it difficult to discuss in his own topic, elaborating and chewing over on what he said.

Docen


I agree with you, I also wish Ian all the best, and you are right, this is not the right place to discuss such things. I am so sorry.
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Re: Diagnosed with BENIGN MND

Postby J4son on June 30th, 2014, 4:07 am

nrwtwitcher wrote:
J4son wrote:
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…


That was a very horrible comment for people like me with BFCS (only since 9 months) with several cramps and, in my case, with high anxiety. I do not understand why to post such a comment, maybe it is reassuring for you J4son, but in my case, where I hoped to become in a really safe zone after 8 months, it is terrifying. I cried the last night during the worse cramps in my feet, lasting the whole night. I am not reading on als sides because I do not want to read such horrible comments.


Nrwtwitcher,

Sorry if what I said here scared you. I was just commenting about the studies mentioned by twitchydoc regarding fasciculation that progressed to MND. It was just a part of the discussion and it didn’t come out of the blue.

Now let me tell you that you should not feel scared at all from what I wrote for many reasons:

- These studies concern a very little percentage of people. 6.7% of a disease that strikes 1 or 2 people by 100.000 per year. That’s extremely small. Millions of people have cramps especially in calves and feet. 6.7% of ALS patients’ means 1 or 2 cases per 1.5 million per year, even rarer than CJD. So please keep things in perspective.

- When we speak about cramps, it’s cramps in unusual places, not in the feet and calves that everybody get and which is usually linked to some mineral deficits. We are also talking about extremely severe cramps with pain that last for days.

- You had twitches before cramping. The cases we are talking about, were people with extremely severe cramping months before twitching.

- \You had a Neuro diagnosis. Your neuro knows about your case better than anyone else here. If he was not worried, it means your condition is 100% benign.

- Many people have severe cramps and twitching, but their condition is completely benign that why we have something called Benign Cramps Fasciculation Syndrome (BCFS)

Finally, let me tell you something you don’t have ALS trust me. You like most people here have health anxiety. I suffer from anxiety too. Each time I was able to overcome anxiety was when I faced it head on. Don’t be afraid from shadows, it doesn’t hurt. Instead of being worried by me mentioning an article (which by the way is already published on this board and you could have find it easily by searching the archives) I encourage you to face everything you read that scares you face to face and analyze by yourself or with the help others why it does not apply to you.

Again sorry if I scared you, and once again you are fine…
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Re: Diagnosed with BENIGN MND

Postby raindog on June 30th, 2014, 5:58 am

This time next year you will look back and think why did i worry needlessly. Time is a great healer and you will all eventually find that you have all the time in the world, so spend it productively on kicking you fears and negative thoughts into touch and spend time doing the things you enjoy, just like you did before this whole thing started.

I promise you all you will get there , so do it sooner rather than later.
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Re: Diagnosed with BENIGN MND

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