Page 4 of 4

Re: Down that road again

PostPosted: December 21st, 2014, 1:25 pm
by garym
German2 wrote: Yesterday i had a clean clinical and clean emg in both calf muscles. Neuro said..definitely no signs of als.

you have to find a way to work on the anxiety you are feeling with regards to your condition....the information from your neuro above tells you what you need to know. now it's just learning to deal with the sxs and getting past the worry.

take care,

Re: Down that road again

PostPosted: December 22nd, 2014, 11:56 am
by German2
Thank you very much Gary for posting me! It's an honour to me....I think there is a lot of anxiety and also a very special body condition with Hashimoto, suspected Ehlers-Danlos Syndrom, slight Fibro involvement (rheuma doc and clinic) and both sides sulcus ulnar nerve syndrom which triggers my anxiety beside my pain. So I really have developed some mnd similar symptoms. It is a pity that I looked to much into this mnd blog for I found some similarity between her and me. But of course my brain says, if I have weak legs and EMG shows up nothing and reflexes are ok, then it must be from my other problems. But the mind plays tricks on me quite often. I am working on it.

Have a nice Christmas to all of you!!

Re: Down that road again

PostPosted: December 26th, 2014, 6:06 pm
by Pascal35
Little Lost wrote:Perhaps I am wrong but the 14% study was based on data gathered from 258 patients between 1987 to 1992, ( 22 to 27 years ago).

Quote : From Amyotrophic Lateral Sclerosis: A Synthesis of Research and Clinical Practice (revised edition 14th December 2006)

Out of a total of 258 patients with ALS examined by one of the authors (AE) over a five-year period between 1987 and 1992, 36 (14%) had fasciculation, usually associated with muscle cramping, as the initial manifestation of their disease. The mean time interval between developing fasciculations and other clinical manifestations of ALS was 7.6±3.4 months (3 to 11 months) (Eisen et al., 1992).

For those concerned please consider the following,

a) emg as a diagnostic tool in 1992 was not nearly as advanced or accurate as it is now, parameters were wider, measurements fewer, and certain software now routinely used, was in infancy.

b) Back then ALS criteria for diagnosis was still disjointed, and the disease itself not so extensively studied. One of the reasons for this book, and the studies it pools together, was to educate neurologists on identifying, diagnosing and treating this rare disease at an earlier stage.

c) 14% was Eisen's opinion way back in 1992, his email to myself was his personal opinion some 21 YEARS LATER in 2013. ( now with 40 years clinical experience and more advanced EMG). Interpretation and relevance of clinical examination for UMN signs of ALS were pretty basic then.

d) All this talk of 14% and 6.7% regards fasciculations, lower motor neuron signs but does not talk about the upper motor neuron signs that may have been present in these patients presenting with the fasciculations. This is what Prof Cav was saying ( remember in his email and although his first language isn't English you get the point)

Quote: As you can imagine I have many similar patients in Portugal, asking my opinion. I have observed many paients with bening FPs, I do not remember to be wrong about the diagnosis, benign FPs vs ALS. The reason is simple. ALS pts tend to have upper motor neuron signs at presentation.....etc etc ).

So one may argue based on Prof Cav statement that in ALS by the time fasciculations appear then upper motor neuron signs should be present and picked up on the clinical. This may indicate a different point of origin between benign fasciculations and pathological fasciculations. By this I mean they may not have the same physiological origins, they both may be generated by different pathways, different processes. Think lung cancer and the common cold, each produce a cough, but the origins of the cough are very different. Shared symptom, but different starting point, hence why benign fasciculations most often never become pathological ALS ones. As a cold does not normally become cancer.

Anyway those are just my thoughts on the 14% study.

Quote that I think TD was referring to

From Amyotrophic Lateral Sclerosis: A Synthesis of Research and Clinical Practice (revised edition)

Amyotrophic Lateral Sclerosis: A Synthesis of Research and Clinical Practice Paperback – 14 Dec 2006
by Andrew Eisen (Author)

Very nice explanation and really helpful...
Basically even if it is 14% or 7% the bottom line is that Dr Eisen states clearly both to his study and to your email that after 8 months of muscle twitching if there is a clean EMG and a clean medical then ALS should be excluded...
And i agree. Back in 1992 the technology of the EMG was much poorer. Even on a recent conflicting study about those 4 people who developed ALS after 3-4 years of fasciculations you could read at the bottom of the study that the EMGs were performed with machines of older technology...

Re: Down that road again

PostPosted: December 30th, 2014, 12:12 am
by veryworried123
I enjoyed the month i didn't log into this site. I enjoyed my home page on my phone not opening to this site automatically. I enjoyed forgetting my password. I enjoyed not secretly hiding from my wife and others to re-read posts and search and check the boards all day long. but just like a drug addict in a room full of drugs i couldnt stay away. My intentions were good but i came across this post and well we all know the rest. Here we go again falling back into that place i didn't want to go. I'm not saying rob j doesn't have some valid points (even though he had a weird way of discussing them). i think its good to not be sheltered and ensure we are always open to new information and i think gary and others did a good job with these multiple rob j posts and its important to not be sheltered as its essential to the integrity of this board

yes i still twitch 1000 times a day (not kidding) close to 16 months now and yes i'm still worried and yes this still consumes me and yes i wish it would *beep* stop but i just think the basics haven't point repeating them as they are all above. I've said it over and over if we could just stop twitching or if could be decreased significantly this would all be easier to forget. But we can't because most of us are remained of it constantly. keep in mind that its the fear of the unknown that consumes us and me as well. for many of us here despite achieving so much we have been unable to beat this fear. We need to spend more time focusing in on this and other correlations to bfs instead of filling this board with trying to prove or disprove things

some key things we should remember that many of us have discussed before:

i'm quoting here a poster "There have been 100s of studies over 4 decades, and scores of avenues tested searching for the elusive early warning sign that preceeds ALS i.e millions of research hours and they have searched 1000s of potential blood markers, changes on MRI results, PET scans, ultrasound anomalies, early EMG findings ,genetic testing, environmental exposures, race, age, location, coexisting conditions, urine analysis, kidney analysis, respiratory disorders, muscle biopsies, diet.... the list goes on for ever.....guess what despite it all.... they have still found NO reliable preclinical early marker for ALS, and that includes the presence of fasciculations. If fasciculations were a statistically reliable biomarker for early ALS, then let me reassure, this would have been exploited a long time ago"

another one in response to some of rob j comments:

- "Mayo clinic who said a clinical and an EMG are enough to reassure a patient –
- Mayo clinic follow up of patients with BFS for decades with 0% developing ALS –
- Eisen’s first study founding that the timeframe between twitching and ALS is around a year as a maximum –
- Eisen’s second study finding the same results –
- A study showing a strong link between BFS and anxiety, depression, neuroticism etc. –
- Prof. Carvalho saying he was never mistaken in his diagnosis of benign twitching vs. malignant twitching - Fake!"

the 5 year thing mentioned by rob j in a previous post. Others posted the 5 year thing as well

"Dr. Andrew Eisen - Canada - "in my opinion if after 8 months there are no other clinical features then it is not ALS."----Robj says --> Good
Dr. J. Katz- Director Neurology, University of Stanford, Forbes Norris ALS research center --->Robj says----> Good
Dr. K. Lomen-Hoerth - Director of Neurology UCSF - "One year clean EMG, no chance." ---> Robj says -----> Good
Dr. Robert Miller, Director at Forbes Norris ALS Research Center, San Francisco, ALS research since 1976!! ----> Robj says ---> Good
Dr. McEvoy, Dr. Watson - Mayo Clinic - Rochester, Minnesota ----> Robj says ---> Good
Cleveland Clinic USA ----> Robj says ---> Good
Mass General (Harvard U) ----> Robj says ----> Good"

i could go on

there may be other reports that contradict these viewpoints but these also can't be dismissed but perhaps we have to keep things in perceptive and follow the facts and the facts say normal clincal and normal emg then your fine and wait up to a year to catch any statistical outliers which are rare of a rare disease

please tell me what i got wrong here in my post