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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 Ghayes420 on December 15th, 2014, 8:51 pm

Robj, yes I do think most people here hate you. :)

If you are looking for an admittance of being a hypochondriac, yes, guilty as charged of having that mental problem.

Good luck in finding somebody on this website that isn't a hypochondriac or horder of health anxiety in general.
A very proud fasciculator since 8/14/2011. :)
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Re: Down that road again

Postby misterjuanperalta on December 15th, 2014, 9:23 pm

RobJ, explain to us why we don't have ALS. You seem to know. Do a better job than others here. Don't just point out others' BS (as you may believe), for lack of a better word. By the way, I happen to trust information others provide here for the most part.
Last edited by misterjuanperalta on November 10th, 2015, 11:35 am, edited 2 times in total.
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Re: Down that road again

Postby garym on December 15th, 2014, 9:35 pm

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Re: Down that road again

Postby garym on December 15th, 2014, 9:43 pm

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Re: Down that road again

Postby misterjuanperalta on December 15th, 2014, 9:45 pm

Wise words, "These guys on this site are just as worried as you. They can't admit it until they (are) pushed to the edge." Seriously, very wise words.
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Re: Down that road again

Postby leaflea on December 16th, 2014, 12:02 am

Can I just say:

J4son: You have the best common sense posts. Clear and direct.

Helen: I adore your illustrations. They make me smile :P

RobJ: I finally see your point but it was a roundabout way of telling it. The other thread today where you talked about the LandLord, you didn't fill in the missing blanks until just now...You implied he started with twitching but never got a diagnosis. He never sought one. He clearly had a WHOLE LOT MORE going on than just twitching or cramping.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: Down that road again

Postby Ghayes420 on December 16th, 2014, 5:53 pm

Thanks for sharing that awesome piece of news Robj. We all appreciate your comments very much. It really makes everyone here rest easier. :roll:

I don't go on the ALS forum because admittedly my psyche can't handle it and plus I was told I don't have ALS so there really is no particular reason to go there.

I wonder how many stories there sound just like this: "...I saw several ALS specialists at the top institutions for a few years after twitching started. They all said I was benign and diagnosed me with BFS. I joined a group of nervous twitchers online and found some peace. I have had clean clinical exams and EMG's for years and now I have weakness and an ALS dx."

I am going to go out on a limb and guess zero. Just a guess.
A very proud fasciculator since 8/14/2011. :)
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Re: Down that road again

Postby German2 on December 17th, 2014, 7:22 am

Dear all,
Thank you for this discussion in my thread. I did not follow it comletely but will take the advantage to all you seniors to ask a question.
18 month oh twiching. 2 years of symptoms. No cramps. Now have problems with weak legs and tingling left foot. Yesterday i had a clean clinical and clean emg in both calf muscles. Neuro said..definitely no signs of als. He just confirmex my sulcus ulnar syndrom. But f course i know that s.th. is wrong...with all your study knowledge...can i be in or out?
Btw als expert in germany said to me that if twitching is longer ago than 12 month it is not related to als if it de elopes later...on the other hand a german blogger who developed als 14 years ago (still alive) had fascis and als was dx 3 years later. She just wfote she started to have some uncoordinated legs in first year...

i am curious on your comments...:-)
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Re: Down that road again

Postby German2 on December 17th, 2014, 7:28 am

Dear all,
Thank you for this discussion in my thread. I did not follow it comletely but will take the advantage to all you seniors to ask a question.
18 month oh twiching. 2 years of symptoms. No cramps. Now have problems with weak legs and tingling left foot. Yesterday i had a clean clinical and clean emg in both calf muscles. Neuro said..definitely no signs of als. He just confirmex my sulcus ulnar syndrom. But f course i know that s.th. is wrong...with all your study knowledge...can i be in or out?
Btw als expert in germany sait to me that if twitching is longer ago than 12 month it is not related to als if it de elopes later...on the other hand a german blogger who developed als 14 years ago (still alive) had fascis and als was dx 3 years later. She just wfote she started to have some uncoordinated legs in first year...

i am curious on your comments...:-)
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Re: Down that road again

Postby crotwich on December 17th, 2014, 7:43 am

German2, sorry but I just don't understand... Why, why and why are you still chasing ALS? After 2 years of your symptoms, once again you have been told by a neuro that you don't have it. But still, here you are and wondering again. Go and celebrate with your girlfriend/wife and your friends and forget about ALS. I also think it would be good for your mental health that for some time you forget about this forum.
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Re: Down that road again

Postby TwitchyDoc on December 17th, 2014, 8:05 am

Last edited by TwitchyDoc on December 17th, 2014, 8:23 am, edited 1 time in total.
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Re: Down that road again

Postby J4son on December 17th, 2014, 8:21 am

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Re: Down that road again

Postby Yuliasir on December 17th, 2014, 9:32 am

The blogger you mention had lack of leg coordination. You just had yesterday antother clinical exam which itself means you have no problems with coordination or muscle strength at the level of clinical examination which means that your feeling of weakness is perceived.
We all know stories about people physically strong and fit who can not make a single step becasue their mind prohibited that for them for certain reasons.

There is something wrong with you besides anxiety (at least you had a month of unexplained fever) - but I think you may forget about MND as a possible reason for that.
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Re: Down that road again

Postby German2 on December 17th, 2014, 4:20 pm

Dear answerer to my post,
Wow i am astonnished that you know this german blogger. She is also famous from tv..yes she had also some other symptoms...but seems a bit unspecific..? For example i do have crazy finger cramps since about ten years. Especially when eating. I am glad that this got a rare phenomenon the last years....and so it never scared me...until the beginning of my strangebody journey. My wrist shrinked since that time and s.t. hurts. Today i got an mrt of it and dont know outcome yet. I definetely have muscle loss in hands though its not yet atrophy. .some nights ago i could not move one arm for seconds while awake and the day after this arm hurt.....so there is a clear strange process going on. Maybe there is something inbetween mnd and other nerve processes...i don't know..it's good to have a clean emg. Though just 2 muscles.but maybe i do not believe enough i those examminations and also statistics do not help me either..the only thing which would help isif only my body would stop that process.. I don' t know if there are more folks like myself..btw sorry for interrupting the study discussion. ..go ahead ;-)
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Re: Down that road again

Postby German2 on December 21st, 2014, 9:31 am

Today I had a cramp in my hand again....first since month. It was in my palm. And I have again shin splints...They come and go...
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Re: Down that road again

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