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. :)
User avatar
Ghayes420
Hero
Hero
 
Posts: 464
Joined: August 29th, 2011, 9:00 pm
Location: Nor Cal

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.
misterjuanperalta
Saint
Saint
 
Posts: 515
Joined: August 21st, 2014, 7:27 am

Re: Down that road again

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

RobJ wrote:I'm not a hypochondriac.

I don't believe you and any other person I've read about has MND or ever will get MND. You and the moderators do a poor job of explaining why others shouldn't worry. Each of you have a story. Heck, I've got emails from some that worry, then reply to others and tell them not to worry or you are stupid or you are idiots.

You aren't understanding what I'm asking you to do. You are too caught up with the fact that I'm challenging you. I'm challenging you and the others to show everyone the studies. Stop talking about them. Post the links to them. I'm not challenging just you. I'm challenging all, to show why we don't have AL$ and why we know we don't and why we know others don't and why we worry and why others will always worry.

Are you understanding what I'm asking you to do? The definition of insanity is doing the same thing over and over again and expecting different results.

Change it up!


I'm not a hypochondriac either. Never have been, hopefully never will be. I'm also not afraid, not anymore anyway. I would very much like for you to educate me on how to help people on this site. Thanks in advance
garym
Moderator
Moderator
 
Posts: 1889
Joined: August 23rd, 2003, 1:24 pm
Location: Texas

Re: Down that road again

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

RobJ wrote:Garym's not understanding my point.

The person that I knew that twitched prior to diagnosis for years, is the statistics that we hear about. That's my point. I knew something was wrong with this person, he twitched but he was weak. He knew something was wrong with him but didn't want to know. He hand shake was like a dead fish, he had difficulty talking, walking, he cramped when he moved, he had difficulty breathing. Every time I saw him it was something new. .

He's the statistic that we are all afraid of the person that twitched prior to AL$. He had AL$ before he twitched, no doubt about it. He just was never diagnosed. He didn't want to be, so he'd be that statistic.

If you've seen it, you'd laugh at yourself for being afraid of having AL$.

Have you gone on the AL$ sites and listened to their stories? That's why I'm asking the seniors here to explain theirs. Ours are silly compared to the AL$ forum stories. Go there, for years I never went there, I was afraid, after going there, I was amazed. What amazed me was that most posting were using eye recognition software for typing. Their stories are nothing like ours. Ours are silly!

Go to the AL$ site and read the stories. Read all you can about AL$. Read up. The more you educate yourself the more free you will be.

These guys on this site are just as worried as you. They can't admit it until they pushed to the edge. They can't go to the AL$ sites either. Read up, educate yourself.....


Ok, I think I get you now but the method you choose confuses people....I've seen als up close and personal too, and having seen it, your point is well made. We worry about a twitch here and there, but folks with als worry about so much more than that. our condition is trivial when compared to als, but the irrational worry is so hard to beat.
garym
Moderator
Moderator
 
Posts: 1889
Joined: August 23rd, 2003, 1:24 pm
Location: Texas

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.
misterjuanperalta
Saint
Saint
 
Posts: 515
Joined: August 21st, 2014, 7:27 am

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?
User avatar
leaflea
Saint
Saint
 
Posts: 525
Joined: November 12th, 2013, 2:06 pm
Location: Minneapolis, MN

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. :)
User avatar
Ghayes420
Hero
Hero
 
Posts: 464
Joined: August 29th, 2011, 9:00 pm
Location: Nor Cal

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...:-)
German2
Saint
Saint
 
Posts: 549
Joined: March 3rd, 2014, 9:51 am

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...:-)
German2
Saint
Saint
 
Posts: 549
Joined: March 3rd, 2014, 9:51 am

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.
crotwich
Senior Member
Senior Member
 
Posts: 58
Joined: July 31st, 2014, 5:33 am
Location: Europe

Re: Down that road again

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

German2 wrote: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...


My German is not perfect but she had far more problems than fasciculations 3 years prior the diagnosis:
-legs uncoordination
-weak wrist
-cramping in fingers
etc...
Last edited by TwitchyDoc on December 17th, 2014, 8:23 am, edited 1 time in total.
TwitchyDoc
Saint
Saint
 
Posts: 1169
Joined: August 7th, 2010, 7:30 am

Re: Down that road again

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

RobJ wrote:Exactly.....

When you read the stories on the AL$ site, there are plenty that had twitching prior to diagnosis by more than several years, plenty! There are posts that question the 6.7% study. They even state they didn't have weakness, I'm betting they did.



Robj, first let me tell you that I appreciate your landlord story, thx for explaining this. In a paper that I found online (will not provide the link) they also talked about preclinical features in rare patients years before an ALS diagnosis. But in the three cases that they mentioned all had weakness from the beginning. One had a wrist drop, the other problems climbing a stairs and exercising and the third some features appeared on an early EMG. But although they called them preclinical because they had a very slow progression, they all had weakness from the beginning.

Now, It’s been a year that I did not visit an ALS website or forum, but a year ago when I did I had the impression that most people did NOT twitch before weakness. But let’s assume it changed and today plenty of people on the ALS forums are claiming they twitched for years before weakness. What do they mean exactly when they say they question the 6.7% study? Does it mean the study is misleading on purpose? Or misleading because of the lack of skill of those who did it? Is there a conspiracy theory that wants us to believe that a man went to the moon in 1969, that the moon is made of rock instead of green cheese, that aliens do not live among us, and that ALS rarely starts with twitches alone?

The 6.7% study was made by one of the best ALS expert in the world and his team. They took several hundred patients and found that contrary to what is being said on the ALS forum, not plenty of them started with twitching. They found close to zero with twitching alone and around 20 persons on a panel of more than 300 hundreds that started with twitching and cramps.

On the ALS forum they maybe all claim that they twitched for 99 years without weakness and were diagnosed when they turned 100. But in the study and among the 20 persons from the 300 ALS patients, who twitched and cramped before weakness, all of them developed clinical deficits within only a year after the onset of the twitching. The same medical team did another study. And here again, they found that the overwhelming majority did not twitch before weakness. A minority did, 14% but once again, guess what all of them (100%) showed clinical deficits within a year. The Israeli study that I mentioned in my previous post based on a panel of more than 500 patients found twitching as a first sign in only in 3% of them. So we have an ALS website where everybody twitched for decades or centuries before weakness, but no scientific study is able to confirm these claims. So either we are living in a terrible conspiracy theory inside the Matrix, or let’s stick to serious published scientific studies and data. Personally I never found a study saying 50 or 60 % of ALS patients started with twitching.

I remember however that on the ALS websites most of the people were young, under 55, and a lot (maybe the majority) were in their thirties or forties. However, in the real world 85% of ALS patients are over 55, and only 10% under 50 (the study showing these numbers can be found somewhere on this board) . So conspiracy theory or just the fact that people under 55 are more prone to use a computer and the internet? Internet is a biased source of information. It’s what doctors say that counts not what seems to appear on the internet of what is written there by some dude.

German2 wrote:Dear all,

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...:-)


Uncoordinated legs and gait problems in ALS is due to muscle weakness. This person did not twitch for three years without weakness and then suddenly the day of the third anniversary of the twitches she couldn’t get up from bed in the morning and was diagnosed in the afternoon. It didn’t happen like that. Weakness appeared the first year, but the process for the final diagnosis took time. It confirms what your doctors told you and what both studies from of Prof. Eisen’s showed: In the very rare cases where twitches is a first sign of ALS other clinical deficits appears within a year.
J4son
Selfless giver of time
Selfless giver of time
 
Posts: 163
Joined: November 21st, 2013, 12:04 pm

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.
User avatar
Yuliasir
Saint
Saint
 
Posts: 2952
Joined: March 3rd, 2012, 1:42 pm

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 ;-)
German2
Saint
Saint
 
Posts: 549
Joined: March 3rd, 2014, 9:51 am

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...
German2
Saint
Saint
 
Posts: 549
Joined: March 3rd, 2014, 9:51 am

Re: Down that road again

Sponsor

Sponsor
 

PreviousNext

Return to The Support Group

Who is online

Users browsing this forum: Google [Bot] and 5 guests