Another perspective..

Post your questions about BFS here

Moderators: JohnV, Arron, garym

Another perspective..

Postby nervousguy1 on February 25th, 2009, 2:52 pm

I decided to google a bit, after i clicked a link in the topic about PNH.

I came across this website :

http://www.pnseuronet.org/professionals/nmt.htm


about 25% of cases, PNH is paraneoplastic and can predate the detection of a tumour by up to 4 years. The most commonly associated tumours are thymoma with or without MG and small cell lung cancer. Skeletal muscle overactivity usually dominates the presentation and tends to be triggered by exercise. Muscle twitching (fasciculations) and/or rippling (clinical myokymia) and painful cramps are the commonest, and often the only, presenting features. In the fully developed syndrome, however, there can also be stiffness, pseudomyotonia, pseudotetany, and weakness. Muscle hypertrophy can develop. The limbs, or limbs and trunk, muscles are most commonly affected, although facial, bulbar and respiratory muscles can also be involved.


What do you think? are the twitches a result of lung cancer? :oops:
Links of interest :

Why you don't have ALS part 1
viewtopic.php?f=3&t=11435&p=81906#p81906

Why you don't have ALS part 2 :
viewtopic.php?f=5&t=11434

nervousguy1
Hero
Hero
 
Posts: 373
Joined: September 16th, 2008, 10:06 am
Location: The Netherlands

Re: Another perspective..

Postby MarioMangler on February 25th, 2009, 2:56 pm

I've seen that stat before, and I know it has been debunked by someone a lot smarter than me. Dig around in the archives, this isn't a new topic. I seriously doubt we are all walking around with undetected lung cancer.
BFS FAQ:
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
User avatar
MarioMangler
Saint
Saint
 
Posts: 1671
Joined: September 16th, 2008, 3:23 pm
Location: Upland, California

Re: Another perspective..

Postby nervousguy1 on February 25th, 2009, 2:58 pm

MarioMangler wrote:I've seen that stat before, and I know it has been debunked by someone a lot smarter than me. Dig around in the archives, this isn't a new topic. I seriously doubt we are all walking around with undetected lung cancer.


Especially since lung cancer before the 30s is 'rare'.. but still..
Links of interest :

Why you don't have ALS part 1
viewtopic.php?f=3&t=11435&p=81906#p81906

Why you don't have ALS part 2 :
viewtopic.php?f=5&t=11434

nervousguy1
Hero
Hero
 
Posts: 373
Joined: September 16th, 2008, 10:06 am
Location: The Netherlands

Re: Another perspective..

Postby MarioMangler on February 25th, 2009, 3:00 pm

Edited for redundancy.
Last edited by MarioMangler on February 25th, 2009, 5:01 pm, edited 1 time in total.
BFS FAQ:
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
User avatar
MarioMangler
Saint
Saint
 
Posts: 1671
Joined: September 16th, 2008, 3:23 pm
Location: Upland, California

Re: Another perspective..

Postby MarioMangler on February 25th, 2009, 3:15 pm

Here's a thread where they discuss the link between twitching and lung cancer. You can read through it if you want, but it generally boils down to this:

1. Just because some PNH symptoms can come up with lung cancer, that doesn't necessarily mean they are the PNH symptoms we have. If a doctor suspected you had cancer, you would have been tested for it. Doctors look for more things than you think.

2. You would probably have more cancer symptoms than just muscle twitching. Lung cancer (like ALS) is an aggressive disease. After 3,4,5 months you'd think you'd have some breathing issues or a pretty serious cough or chest pain. My mom had lung cancer and she had a nasty, nasty cough that was pretty hard to miss.

3. In the many years that this site has been up, there has not been one anecdotal case where someone went from BFS to lung cancer. Not one. As in zero, ever. In fact, according to the message board archives, there was never one case over on braintalk among its members either. Obviously you can't account for everyone who has ever posted here, ever, but you'd think if there was actually one then we would have heard about it.

Anyway, here's the discussion. Like I said, this is not a new subject around here: viewtopic.php?f=3&t=4744&start=0&st=0&sk=t&sd=a&hilit=lung+cancer#p31169
BFS FAQ:
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
User avatar
MarioMangler
Saint
Saint
 
Posts: 1671
Joined: September 16th, 2008, 3:23 pm
Location: Upland, California

Re: Another perspective..

Postby nervousguy1 on February 25th, 2009, 3:18 pm

MarioMangler wrote:Here's a thread where they discuss the link between twitching and lung cancer. You can read through it if you want, but it generally boils down to this:

1. Just because some PNH symptoms can come up with lung cancer, that doesn't necessarily mean they are the PNH symptoms we have. If a doctor suspected you had cancer, you would have been tested for it. Doctors look for more things than you think.

2. You would probably have more cancer symptoms than just muscle twitching. Lung cancer (like ALS) is an aggressive disease. After 3,4,5 months you'd think you'd have some breathing issues or a pretty serious cough or chest pain. My mom had lung cancer and she had a nasty, nasty cough that was pretty hard to miss.

3. In the many years that this site has been up, there has not been one anecdotal case where someone went from BFS to lung cancer. Not one. As in zero, ever. In fact, according to the message board archives, there was never one case over on braintalk among its members either. Obviously you can't account for everyone who has ever posted here, ever, but you'd think if there was actually one then we would have heard about it.

Anyway, here's the discussion. Like I said, this is not a new subject around here: viewtopic.php?f=3&t=4744&start=0&st=0&sk=t&sd=a&hilit=lung+cancer#p31169



As for part 2; i'm having some sort of 'chronic hyperventilation' syndrome, which sometimes results in pins and needles, headaches, breathing difficulties and lightheadedness.. but its hard for me to think rationally while im worrying :roll:
Links of interest :

Why you don't have ALS part 1
viewtopic.php?f=3&t=11435&p=81906#p81906

Why you don't have ALS part 2 :
viewtopic.php?f=5&t=11434

nervousguy1
Hero
Hero
 
Posts: 373
Joined: September 16th, 2008, 10:06 am
Location: The Netherlands

Re: Another perspective..

Postby LaurentCH on February 25th, 2009, 3:27 pm

well on the website they speam about a relation between twitching and all sort of cancer, mainly lung cancer but not only...they say that the bodys reaction aims to destroy the cancer but finally attacks the nervs by error. sounds rational to me. but mainly lungcancer has got other symptoms...
BE THE CHANGE YOU WANT TO SEE IN THE WORLD
User avatar
LaurentCH
Saint
Saint
 
Posts: 950
Joined: October 27th, 2008, 7:30 am
Location: switzerland

Re: Another perspective..

Postby Blizna on February 25th, 2009, 3:58 pm

Yeah its quite known that neuromyotonia (sorry if its not in english) is often paraneoplastic, thats why I asked my doc to check tumourmarkers in my first bloodtests. Fortunately it is real nerve damage and can be seen on EMG.
BTW nervousguy1 - I dont really mean it, but you were strictly against "scary" topics about ALS / BFS and now you are posting to public that twitching can precede cancer?! Hypocrisy :D
Blizna
Hero
Hero
 
Posts: 303
Joined: August 22nd, 2007, 2:29 am

Re: Another perspective..

Postby nervousguy1 on February 25th, 2009, 4:05 pm

Blizna wrote:Yeah its quite known that neuromyotonia (sorry if its not in english) is often paraneoplastic, thats why I asked my doc to check tumourmarkers in my first bloodtests. Fortunately it is real nerve damage and can be seen on EMG.
BTW nervousguy1 - I dont really mean it, but you were strictly against "scary" topics about ALS / BFS and now you are posting to public that twitching can precede cancer?! Hypocrisy :D

Maybe, but i dont think i just have BFS, since i have chronic pains all over my body that wax and wane. I fear that i have neuromyotonia :roll:
Links of interest :

Why you don't have ALS part 1
viewtopic.php?f=3&t=11435&p=81906#p81906

Why you don't have ALS part 2 :
viewtopic.php?f=5&t=11434

nervousguy1
Hero
Hero
 
Posts: 373
Joined: September 16th, 2008, 10:06 am
Location: The Netherlands

Re: Another perspective..

Postby Boo Boo on February 25th, 2009, 4:28 pm

I was a smoker for 15 years and quit 3 1/2 years ago. I think I'd have some sort of cough, etc. by now too. My grandmother passed away from it and it was quite obvious; coughing up blood and such. It works pretty fast. She as diagnosed and within 3 months or less, she passed. I do also know a 35 year old that had cancer rampant through his body..it spread to his lungs too and within 4 WEEKS of diagnosis, he passed too. BUT he had other symptoms as well. Your breathing would be affected in SOME way or another. Interestingly enough, cancer doesn't scare me. I actually have friends that obsess over it - my dad does a little over pancreatic cancer and well, I just choose the degenerative muscle diseases to focus on!
User avatar
Boo Boo
Senior Member
Senior Member
 
Posts: 91
Joined: January 10th, 2009, 5:38 pm

Re: Another perspective..

Postby nervousguy1 on February 25th, 2009, 4:32 pm

Boo Boo wrote:I was a smoker for 15 years and quit 3 1/2 years ago. I think I'd have some sort of cough, etc. by now too. My grandmother passed away from it and it was quite obvious; coughing up blood and such. It works pretty fast. She as diagnosed and within 3 months or less, she passed. I do also know a 35 year old that had cancer rampant through his body..it spread to his lungs too and within 4 WEEKS of diagnosis, he passed too. BUT he had other symptoms as well. Your breathing would be affected in SOME way or another. Interestingly enough, cancer doesn't scare me. I actually have friends that obsess over it - my dad does a little over pancreatic cancer and well, I just choose the degenerative muscle diseases to focus on!


Aye, i'm suffering with this for 6 months now. Apart from the occasional lightheadedness and perceived heavy breathing( due to hyperventilating ), i guess im healthy. My doctor checked my lungs about 3 months ago and he didn't found anything unusual. I hate the hypochondria :(

Note : i smoked for 6 months till june 2008, so thats why i'm having a panic attack :roll:
Links of interest :

Why you don't have ALS part 1
viewtopic.php?f=3&t=11435&p=81906#p81906

Why you don't have ALS part 2 :
viewtopic.php?f=5&t=11434

nervousguy1
Hero
Hero
 
Posts: 373
Joined: September 16th, 2008, 10:06 am
Location: The Netherlands

Re: Another perspective..

Postby Boo Boo on February 25th, 2009, 4:40 pm

You smoked for only 6 months?? You must be the shortest nicotine addict in know! Your lungs should amost be pearly white again!
User avatar
Boo Boo
Senior Member
Senior Member
 
Posts: 91
Joined: January 10th, 2009, 5:38 pm

Re: Another perspective..

Postby nervousguy1 on February 25th, 2009, 4:41 pm

Boo Boo wrote:You smoked for only 6 months?? You must be the shortest nicotine addict in know! Your lungs should amost be pearly white again!

I smoked in periods with about 8 months between them. Im 21 now, and i think i smoked about 1.5 year in total. I started when i was 16
Links of interest :

Why you don't have ALS part 1
viewtopic.php?f=3&t=11435&p=81906#p81906

Why you don't have ALS part 2 :
viewtopic.php?f=5&t=11434

nervousguy1
Hero
Hero
 
Posts: 373
Joined: September 16th, 2008, 10:06 am
Location: The Netherlands

Re: Another perspective..

Postby nervousguy1 on February 25th, 2009, 4:55 pm

I guess i owe you guys an apology..

90% of the time, i think rationally.. and it went so good for 3 months after my clean diagnosis.

Now i seem to fall back into the abyss :cry:
Links of interest :

Why you don't have ALS part 1
viewtopic.php?f=3&t=11435&p=81906#p81906

Why you don't have ALS part 2 :
viewtopic.php?f=5&t=11434

nervousguy1
Hero
Hero
 
Posts: 373
Joined: September 16th, 2008, 10:06 am
Location: The Netherlands

Re: Another perspective..

Postby Boo Boo on February 25th, 2009, 5:00 pm

No apologies necessary. I too, have fallen into the abyss, as you put it. Be happy you're 21! I'm 35 so I'm still considered young - yet almost to most disease age groups if you know what I mean! :wink: I try and be helpful towards others yet do a good deal of freaking out on my own. I haven't had tongue twitches yet I have been googling them like crazy since I'm convinced it's about to happen any minute now?? I lookl at my tongue incessantly, it's ridiculous! When i get a little facial twitch around my mouth, I'm like, was that my tongue?? and run to the mirror. My neuro looked in my mouth twice in January and said everything in there looks great and healthy yet ever since my clean limb EMG two weeks ago, I am now fixated on my face/mouth/tongue. What a frickin nightmare!!
User avatar
Boo Boo
Senior Member
Senior Member
 
Posts: 91
Joined: January 10th, 2009, 5:38 pm

Re: Another perspective..

Sponsor

Sponsor
 

Next

Return to Questions About BFS

Who is online

Users browsing this forum: Bing [Bot] and 12 guests