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AboutBFS.com • View topic - Down that road again

Down that road again

BFS Online Support Group

Moderators: JohnV, Arron, garym

Re: Down that road again

Postby garym on December 21st, 2014, 1:25 pm

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Re: Down that road again

Postby German2 on December 22nd, 2014, 11:56 am

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!!
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Re: Down that road again

Postby Pascal35 on December 26th, 2014, 6:06 pm

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Re: Down that road again

Postby veryworried123 on December 30th, 2014, 12:12 am

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 changed...no 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

thanks
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Re: Down that road again

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