My Story (Very long, but meant to help)

General Topics

Moderators: JohnV, Arron, garym

Postby whataprettyworld on November 15th, 2007, 6:54 pm

Jennhaz wrote:Ok, I tried to stop all the debating but i guess you guys want to keep it up, so all I have left to say is then maybe you should go to the anxiety forum if that is what you have and is what is causing your symptoms....Jenn


OK, maybe the topic has been exhausted....who knows. The thing is this is an interesting and valid discussion so why should we stop all the debating? From my experience when someone wants to stop a debate it is because they feel their position is becoming somewhat untenable :wink:
whataprettyworld
Senior Member
Senior Member
 
Posts: 98
Joined: November 10th, 2007, 6:06 am

Postby stevepaul on November 15th, 2007, 6:58 pm

While I've had, but not related to, PNH, I had a period of clinical depression. During this period I did not experience any elevated symptoms.
"The wonder of the world, the beauty and the power, the shape of things,
their colours, lights and shades; these I saw. Look ye also while life lasts."

Denys Pitchford Watkins
stevepaul
Hero
Hero
 
Posts: 439
Joined: November 7th, 2004, 1:22 pm
Location: lancashire England

Postby Jennhaz on November 15th, 2007, 7:02 pm

OMG I cannot believe you. NO THAT IS NOT WHY I WANTED TO STOP. What are you, 10 yrs. old? I was trying to stop a fight before it started is all. But if you want to continue then we will keep debating, fine with me. But of course Stevepauls quote does say it all!!!! Oh you might also want to look at the meds these so called Dr.'s stuff down your throat for anxiety....
Jesus bore my sickness and carried my pain. Therefore I give no place to sickness or pain. For God sent His Word and healed me. (Ps.107:20)

"Life is what happens to you while you are making other plans!!"
Jennhaz
Saint
Saint
 
Posts: 1530
Joined: July 14th, 2006, 6:28 am

Postby whataprettyworld on November 15th, 2007, 7:17 pm

Jennhaz wrote:OMG I cannot believe you. NO THAT IS NOT WHY I WANTED TO STOP. What are you, 10 yrs. old? I was trying to stop a fight before it started is all. But if you want to continue then we will keep debating, fine with me. But of course Stevepauls quote does say it all!!!! Oh you might also want to look at the meds these so called Dr.'s stuff down your throat for anxiety....


Oh come on....I even did a Mr Winky for you :)

BTW, I am med less.

Oh, I am 40 as well.

Can we be friends?
whataprettyworld
Senior Member
Senior Member
 
Posts: 98
Joined: November 10th, 2007, 6:06 am

Postby lucy on November 15th, 2007, 8:43 pm

stevepaul,

Why do you come off as though you are the complete authority on this based on your own experience and a few studies?? Your answers are very short and undetailed, not very reassuring and quite unimformative. ..its as though you feel that you don't have to explain things further, you are simply right! :roll:
Last edited by lucy on November 15th, 2007, 8:52 pm, edited 1 time in total.
lu
lucy
Selfless giver of time
Selfless giver of time
 
Posts: 109
Joined: September 22nd, 2007, 3:16 pm
Location: usa

Postby lucy on November 15th, 2007, 8:50 pm

Jenn wrote:
...look at the meds these so called Dr.'s stuff down your throat for anxiety....
_________________


Jenn, don't get angry...I just wanted to say in regard to that comment that that is the whole point in a way- with bfs/pnh its seems like a wide variety of meds are suggested all over this board, all having bad or unknown side effects. And I am sure that there are psychiatrists who will and do want to just stuff meds at someone , and perhaps this has been your experience. But I think Kevintwister was attempting to show that bfs and or anxiety can be dealt with withOUT drugs or meds. If one can come to terms with what is going on with one then the anxiety can become an unlearned pattern. Hope I make sense- PS I do agree with you on meds- I feel like they should be avoided in most situations.
lu
lucy
Selfless giver of time
Selfless giver of time
 
Posts: 109
Joined: September 22nd, 2007, 3:16 pm
Location: usa

Postby j7m on November 15th, 2007, 8:58 pm

I think some of us need to go back and re-read the responses to this post. No one is trying to convince anyone that all BFSers are suffering from anxiety, nor that their symptoms were triggered by anxiety. This post's initial intent was to explain that anxiety is one of the many causes out there - not the only cause.

I personally think the cause can be any of the above.

Kevintwister,

I admire your post and your diligence. Regardless of the cause, anxiety has to be conquered. And if the symptoms stop, then Yahtzee! it was anxiety related. If not, then other avenues can be explored.

Jennhaz,

Its not fair to ask anxiety BFSers to post elsewhere. If we take this stance then we can ask the autoimmune posters to post on an autoimmune site. I think this is open and fair discussion. It can only benefit those coming to this site to find aid.
"Idle minds are the devil's playground"
j7m
Selfless giver of time
Selfless giver of time
 
Posts: 116
Joined: October 25th, 2007, 10:24 pm
Location: Chicago

Postby zekebcfs on November 15th, 2007, 9:26 pm

BCFS/BFS/PNH is not fully explained by any length of the imagination. You guys are going in circles about things that have already been debated many times. I hope to see the "anxiety is the cause crowd" back as soon as that can no longer explain their sxs. Sure it makes it worse that is a given but it is not the cause for the vast majority. Some sure do have stress as their cause and reason but very few go long with this theory. What causes it? I don't know....for all I know it could be the lead in the condoms I bought from China. :D

There is also
Aquired immune deficiancy Syndrome
Down syndrome

I have been on Klonopin for a while now and it "calms" the nerves not the anxiety as it is anticonvulsant. But no one can ever dismiss that anxiety plays a major role in new and old twitchers sxs it is especially effective on the newly afflicted. I just don't freak out anymore and allow the strange sensations to get the better of me. I also try not to argue to much and I hate to see some old timers get themsleves dragged into this. You guys know better. How many times has the anxiety victim not returned to this board. I know! I was one. Jenn rememeber we were also there at one time. Let it play out! For the rest ...if it works for you then run with it because I would love for it to be anxiety but I don't have that luck.
Zekebcfs
"Keep them busy busy busy, back on the farm with the other animals." We are kept so busy with business (or busyness) that we do not understand or participate in the decisions and events that will crucially affect our future.
User avatar
zekebcfs
Saint
Saint
 
Posts: 745
Joined: January 5th, 2007, 5:34 pm
Location: Texas

Postby Angie on November 15th, 2007, 9:34 pm

Lucy,

You have no idea what you're talking about and you have not done any research into this condition at all. If you don't like research or implications thereof, that's makes no sense at all. I will continue to ask people who are eager to know about their medical condition to look into the studies that have been done by people with MDs and know what they're talking about. What you choose to believe is simply not that interesting to me as it is completely irrelevant to the truth.

Of course we have anxiety over a peripheral nervous system condition that has unusual symptoms. Of course there is a mind-body connection. There is also evidence that a small percentage of people aquire peripheral nerve hyperexciteability and it is a condition that can be treated. No matter how many extensive fake lists of symtpoms Kevin comes up with, no one can refute the science behind the studies that have been done over a number or decades and the evidence they turned up. Have you even seen a neurologist? I have and he knew of BCFS and the symptoms. My new neurolgoist never once mentioned anxiety, but he did mention my seeing a neuromuscular specialist for the stiffness in my leg and the painful cramp in my foot. Get educated on this issue before you go spouting off on this anxiety and other nonsense, please.
Last edited by Angie on November 15th, 2007, 9:44 pm, edited 1 time in total.
Cramp-fasciculation syndrome: a treatable hyperexcitable peripheral nerve disorder.
Neurology. 1991 Jul;41(7):1021-4 Tahmoush AJ, et al.
"muscle aching, cramps, stiffness, exercise intolerance, and peripheral nerve hyper excitability"
User avatar
Angie
Saint
Saint
 
Posts: 946
Joined: March 30th, 2007, 1:35 pm
Location: PA

Postby lucy on November 15th, 2007, 9:43 pm

Angie, I really don't care to fight. - obviously you are just trying to be hurtful and have never read any of my other earlier posts on this site.
lu
lucy
Selfless giver of time
Selfless giver of time
 
Posts: 109
Joined: September 22nd, 2007, 3:16 pm
Location: usa

Postby zekebcfs on November 15th, 2007, 9:46 pm

We are going to have to remove that Saint title because you have a furious uppercut :P

I just wish I were one of the lucky ones who did have anxiety as the cause of the cramps, twitching etc etc.
Zekebcfs
"Keep them busy busy busy, back on the farm with the other animals." We are kept so busy with business (or busyness) that we do not understand or participate in the decisions and events that will crucially affect our future.
User avatar
zekebcfs
Saint
Saint
 
Posts: 745
Joined: January 5th, 2007, 5:34 pm
Location: Texas

Postby Angie on November 15th, 2007, 9:47 pm

Lucy, I think you are being argumentative without having done any real research and you just don't want to accept the truth about your condition. For that, I feel very sorry for you because it is going to be an even longer and harder struggle for you when you realize you are not going to be in control of your symptoms and they will probably come and go the rest of your life. I'm sorry, but it's true.
Last edited by Angie on November 15th, 2007, 10:17 pm, edited 1 time in total.
Cramp-fasciculation syndrome: a treatable hyperexcitable peripheral nerve disorder.
Neurology. 1991 Jul;41(7):1021-4 Tahmoush AJ, et al.
"muscle aching, cramps, stiffness, exercise intolerance, and peripheral nerve hyper excitability"
User avatar
Angie
Saint
Saint
 
Posts: 946
Joined: March 30th, 2007, 1:35 pm
Location: PA

Postby j7m on November 15th, 2007, 9:54 pm

Keep up the hope Lucy!

This discussion is getting a little too personal...maybe we can ease the topic with a little less intensive discussion on sex, race, politics and religion.

Hey whatapretty world...let's talk about Dawkins and his stance on God in the gaps and irreducible complex systems!
"Idle minds are the devil's playground"
j7m
Selfless giver of time
Selfless giver of time
 
Posts: 116
Joined: October 25th, 2007, 10:24 pm
Location: Chicago

Postby Nancy on November 15th, 2007, 11:01 pm

This discussion is no different than how it would go if you had a room full of equally trained and experienced neurologists debating their thoughts and opinoins about BFS/BCFS. Since there is little established fact outside the establishment that there are a set of symptoms that hang together on a pretty consistent basis which have come under various diagnostic labels including BCFS, BFS, PNH, to name only a few....and are considered neurological in nature (meaning the brain and central nervous system are involved)...you would find a considerable variety of explanations for how one could acquire the syndrome. My own neurologist said the following things about my symptoms:

1. Fasciculations are common and almost always benign.

2. BFS/BCFS often can be triggered by a period intense exercise. (you will find this suggestion in your searches on BFS).

3. The ringing in my ears was likely related to the anxiety I was feeling about my BFS symptoms.

Interestingly, he offered me no treatment. He did offer to do an EMG to ease any remaining anxiety I might have. I declined.

Some of you have been told other things about your symptoms by your neurologists. Thus my point...and this is not true only for BFS but for many medical conditions. My best guess is consistent with what someone stated above...they are probably ALL correct! Many illnesses have more than one potential etiology...like hypertension, cardiovascular disease, and cancer. They all exist and are "medical" in nature and all have multiple biological/environmental/emotional/psychological variables that can contribute to their genesis.

Like it or not nothing is black and white, especially with this disorder. However, if your suffering is reduced by approaching it as such, then good for you. But don't slam the folks who might be a bit more inclusive in their own understanding of their situation. And vice versa.

The more resistance I see in someone, the more I have to wonder just how much the thing they so vehemently must deny is driving them. Why not at least just wonder about that a little? You never know what treasures you might find.

I wish each of you well in your journey...this life. I thank you for coming along side of me and for letting me do the same for you.
Nancy
Selfless giver of time
Selfless giver of time
 
Posts: 109
Joined: October 24th, 2007, 10:19 pm
Location: Midwest

Postby Slavin Balen on November 15th, 2007, 11:41 pm

Maybe I am wrong but what I know from ENT specialists is following:
Tinnitus is related to ACOUSTIC TRAUMA, C-SPINE MALFORMATION, ACOUSTIC NEUROMA, TMJ DYSFUNCTION, MENNIERE'S DESESAE (unlikely) and others not so common causes (for example anxiety). The first is most common in younger population. Second in a little older population. In my cases tinnitus was growing up during 3-4 months during 2002-2003 and stopped in spring 2003, a year BEFORE first twitch in my eyelid. I did remember when I first noticed strange noise just like the wind in my left ear. It was at the concert not so noisy pop band Kosheen.
User avatar
Slavin Balen
Hero
Hero
 
Posts: 399
Joined: July 25th, 2004, 7:26 am
Location: Zagreb, Croatia

Sponsor

Sponsor
 

PreviousNext

Return to General Topics

Who is online

Users browsing this forum: Bing [Bot] and 2 guests