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just Googled bfs

PostPosted: May 18th, 2015, 3:33 pm
by Kevo5684
It's not wonder that a hypo and a ocd person like me is so scared I mean there is so much scary stuff out there I'm not trying to spread fear I'm trying to stop fearing o shoukd be over the fear by now but 1yr and 9 months in and I'm still scared the fear recently ramped back up after some posts I've seen and some Googling and let's face it we google why cause usually there is good info on there in this case there is just enough bad to scare the living daylights out of me Wikipedia and etc all have just enough scary info on there about *** to scare us so whay can I lean on please help me give me some info that makes me stop worrying please anything will help I can't find any good stuff my mind all ways goes to the bad stuff and I'm at a breaking point quick rundown 29 yr old male twitching for 1yr 9 months some good periods in there cramps etc no weakness some fatigue and lots if stress

Re: just Googled bfs

PostPosted: May 18th, 2015, 11:31 pm
by Yuliasir
Kevo, first of all this iste is a source of good info you may search for. It contains thousands of life stories of which only 3 ended up with ALS diagnosis. For 15 years. Not a bad outcome.
Second, this site also contains many stories of how fear of disease ruins the lives. Latest one is a story of TwitchyDoc, who is one of the most educated and most perssimistic person on this site. It is a real drama, and it is devastating.

With an almost two years of twitching and no neurological symptomes at your age chances you are dying right now in a clinical meaning are close to zero (at least in regards of ALS). But, as one of fellows said consideting Doc's story, you also do not live your life.

Go and get professional help - psychiatrist for meds. psycjologist for counseling.
Most of fellows here have serious disease - but not ALS and not BFS of course. BFS is just a symptom. Vast majority of us suffer from severe disorders of anxiety and obsession spectrum plus diseases of autonomous nerve system and possibly polyneuropaties. Many of us have inherited hypermobility syndrom (Ellers-Danloss syndrome) at which visible deficiet is lack of collagen (too flexible skin and joints) but invisible consequence is a specific issues in central and periferal neural system, demonstrated as polyneuropaties, Raynaud syndrome, cramps, pains and depression/anxiety. We can not treat our flexible or loose joints, but anxiety is what we can fix.

go and get not reassurance but essential treatment for your main disease. Then you would be able to reassure yourself much more efficiently thatn anyone could do here. By the way, English wikipedia had an article about benign fasculations syndrome (and in fact it lead me here in my bad times).

My advice is still to seek professional help.

Re: just Googled bfs

PostPosted: May 19th, 2015, 6:06 am
by Kevo5684
Thanks so much your probly right but I am too proud to go get phyciactric help I know I need it though I have horrible ocd centered around religion and guilt for bad thaughts and I have a hard time with it .thanks for the post just curious in those three cars how much like bfsers were they did they have clinical weakness ? Well I guess maybe I should stop worrying and trust God

Re: just Googled bfs

PostPosted: May 19th, 2015, 7:03 am
by Yuliasir
as far as I remember, due to the specific nature of our site (dedicated to twithcving) none of them come here with clinical weakness obvious to them. One guy (Tdenver) just had some weak grip not eveident for him yet but quickly developed that (in hs last report he said he started to have progressive weakness on the left hand). At the moment of diagnosis (from 3 month to 1 years after getting here on site) however thay all had significant neurological deficites (either reflexes changes or physical changes like voice changes etc.)

But anyway their overall clinics was quite noticeably different and doctors did not let them go away as they in fact urge most of our fellows. We all are followed for about a year but after that mostly doctors would say - go and live your life, and many of the fellows feel they are not happy/satisfied. But medical stats and experience are obviously saying to our physicians that if the patien within 1 year of fololow up did not drop the foot or got paralysed hand, or did not slur as a drunken all the time, etc etc. - it means that he or she is fairly safe.

Re: just Googled bfs

PostPosted: May 19th, 2015, 9:31 am
by Kevo5684
I would agree with that and hope and pray to the good Lord above its true and try to have faithh. What about anxiety I really don't want to take paxil wich is what I was prescribed but I'm trying to overcome it by myself and ideas or natural things or just say to self stop ! It will be ok