Diagnosed with Peripheral Nerve Hyperexciteability (PNH)

General Topics

Moderators: JohnV, Arron, garym

Re: Diagnosed with Peripheral Nerve Hyperexciteability (PNH)

Postby raindog on December 2nd, 2014, 5:53 pm

leaflea wrote:it sort of puts in in perspective...but.. in the study linked above,

1. cancer incidence was much higher than would be in the general population in the amount of time studied, specific types of cancer (lung and thymoma)

2. we, as a group, seem to have a LOWER incidence of cancer than the general population

3. how many of our neuros ruled out cancer? How many of us presenting older than age 40 have serial chest CT scheduled as suggested by the authors?I do not think my neuro checked into any of this

Other things that stand out to me in the study above is how rare this bfs crap is...and yet many of us on here have more severe symptoms, and some less severe than those in the study. In this study,in a neuromuscular clinic (actually two locations of a clinic), they had only 60 patients present with twitching and/or cramps in a period of 10 years! And this is ALL of those who presented in this way. That is only six per year! It also means that some of those who presented in the last year or a few may have developed cancer after the study ended. Two of these developed MND which would be consistent with the 6-7 % if not fewer. BFS is complex and not just simple twitching.

it is all very interesting. disturbing to me, but interesting.


Pester your doctors that you require the monitoring of an x ray / ct scan as the constant worry is hindering your recovery...And then after the 5 or so years and no cancer has occured your odds are the same as the man next door as long as he's not an obese alcoholic 30 cig a day man. :wink:
User avatar
raindog
Saint
Saint
 
Posts: 1289
Joined: March 17th, 2008, 6:51 pm
Location: Barnsley UK

Re: Diagnosed with Peripheral Nerve Hyperexciteability (PNH)

Postby leaflea on December 2nd, 2014, 6:20 pm

Raindog I think you're being sarcastic. Since you are past the 4-5 years it is easier to be so glib. I am not freaking out nervous about this, but it is in the back of my mind. And according to this study, rightly so. I find it just as interesting the very low incidence of cancer around here on this forum.
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: Diagnosed with Peripheral Nerve Hyperexciteability (PNH)

Postby raindog on December 2nd, 2014, 7:22 pm

leaflea wrote:Raindog I think you're being sarcastic. Since you are past the 4-5 years it is easier to be so glib. I am not freaking out nervous about this, but it is in the back of my mind. And according to this study, rightly so. I find it just as interesting the very low incidence of cancer around here on this forum.


I'm 8 years in and being as ive recently developed and been diagnosed with selective IgM deficiency

http://emedicine.medscape.com/article/137693-overview

Whereby the condition is more common secondary than primary so its more commonly found in people with malignancies (myloma sarcoma lymphoma) or autoimmune disease . Then besides my 2 dirty emgs (which i would say is even worse now) ive since been diagnosed with anti smooth muscle positive and autoimmune hepatitis....i happen to think i'm being more optimistic in my outlook than sarcastic to the majority of people here who i try and reassure so to help break their own cycle of negativity and fear.
User avatar
raindog
Saint
Saint
 
Posts: 1289
Joined: March 17th, 2008, 6:51 pm
Location: Barnsley UK

Re: Diagnosed with Peripheral Nerve Hyperexciteability (PNH)

Postby leaflea on December 2nd, 2014, 7:44 pm

I know you have suffered a lot with this Raindog, and I know you are really very positive (which is why I don't understand the prevailing attitude about this topic on this board). I am sorry to hear of your recent findings and complications! But I don't understand why everyone glosses over the information in this and other studies. In light of your experience and length of time with all of this crap, this might seem like insignificant information. But did you read the study you posted? To me, being newer to this and my age, and with so many symptoms - not just twitching by any means - this is concerning. And I just might pester my neuro for these scans. However, I detest the radiation if the suspicion for these is really low like this board makes it seem...the disinterest in this topic, the seeming low suspicion by my and other neuros people here have seen, and the few who report any malignancy. This is why I think the discussion is valuable...the existence of these studies which indicate real risk, the cumulative experience we have with 100's of neurologists...I am sure you are very kind, and I am a nice person also. I am not trying to create any fear...just rational discussion of scholarly journal articles.
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: Diagnosed with Peripheral Nerve Hyperexciteability (PNH)

Postby raindog on December 2nd, 2014, 8:27 pm

leaflea wrote:I know you have suffered a lot with this Raindog, and I know you are really very positive (which is why I don't understand the prevailing attitude about this topic on this board). I am sorry to hear of your recent findings and complications! But I don't understand why everyone glosses over the information in this and other studies. In light of your experience and length of time with all of this crap, this might seem like insignificant information. But did you read the study you posted? To me, being newer to this and my age, and with so many symptoms - not just twitching by any means - this is concerning. And I just might pester my neuro for these scans. However, I detest the radiation if the suspicion for these is really low like this board makes it seem...the disinterest in this topic, the seeming low suspicion by my and other neuros people here have seen, and the few who report any malignancy. This is why I think the discussion is valuable...the existence of these studies which indicate real risk, the cumulative experience we have with 100's of neurologists...I am sure you are very kind, and I am a nice person also. I am not trying to create any fear...just rational discussion of scholarly journal articles.


I really believe in that the vast majority of cancers are self inflicted due to lifestlye choices. In my case my whole journey started after a flu like virus after having the flu vaccine. In my opinion that signalled my autoimmune system to go into overdrive and living with this for 8 years thats how it feels 24/7. If i were a lifelong smoker or heavy drinker or obese it might be the case that i would not be here right now.

In that study there is no knowing how many were smokers and if so how long and how much they smoked or even their ages and the same would apply to drinking and obesity that these few people who had cancer ...so in reality i would assume a random a cross section of the general public who being treated for example with diabetes or depression would have a similar result.

My wife's aunt had MS for over 20 years and due to morbidity she gained over 6 stone in weight and died of cancer ...so is MS a paraneoplastic syndrome?

I genuinely hope that my assumption is right and bearing in mind my time here ive yet to see anyone post about them being diagnosed with a cancer that is related to this condition and if they do (and it will happen at some point) it would be interesting to know about their lifestyle habits.
User avatar
raindog
Saint
Saint
 
Posts: 1289
Joined: March 17th, 2008, 6:51 pm
Location: Barnsley UK

Re: Diagnosed with Peripheral Nerve Hyperexciteability (PNH)

Postby leaflea on December 2nd, 2014, 8:42 pm

A simple superficial analysis of these statistics implies this is far greater than would be expected in the general population or would be found in another disorder such as diabetes or depression. For one thing, those two latter problems tend to have more unhealthy associated habits AND are common. PNH is rare - according to these studies. Plus, most of us on this site tend to be healthier than the general population... we tend to be overexercising athletes. If mine didn't present after a particularly stressful period of my life like the other majority of us (the other majority being after virus or vaccine) I'd be more worried about myself. Studies like this one do make you wonder though...unless you are 20, or past 4 years with this crap...that is what I've been saying...we have an extremely low incidence of cancer on this board...Why is this in such contradiction to the study you posted? What makes us different??
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: Diagnosed with Peripheral Nerve Hyperexciteability (PNH)

Postby raindog on December 3rd, 2014, 5:03 am

I think it would have been a more thorough study if we had details of all the patients and their lifestyle habits as it have told us more of the ones who had the tumours and any possible connections to their habits and diet.

We must also remember that a paraneoplastic syndrome is a disease or symptom that is the consequence of cancer in the body...so on that basis i still stand by the fact that everyone here should still carry the same percentage as the general public and that each one of us is at far greater risk if we have habits that give us a far greater risk of developing cancer due to our past/ present lifestyle. I also agree that even people who live very healthy lives still get cancer but obviously the percentage call is far less than those who lead unhealthy lifestyles.

If you are genuinely concerned then i would advise that you print off the study and make sure your GP or Specialist who is treating you do the appropriate tests that will help see what if anything is going on in respect to cancer.
User avatar
raindog
Saint
Saint
 
Posts: 1289
Joined: March 17th, 2008, 6:51 pm
Location: Barnsley UK

Re: Diagnosed with Peripheral Nerve Hyperexciteability (PNH)

Postby leaflea on December 7th, 2014, 1:55 am

and then there is this one that sort of flies in the face of it. out of 37 subjects NONE had malignancy, but 12 had benign tumors. What the heck - I can't make heads or tails of this. Anyone?

http://www.ncbi.nlm.nih.gov/pubmed/23836298
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: Diagnosed with Peripheral Nerve Hyperexciteability (PNH)

Postby misterjuanperalta on December 7th, 2014, 2:00 pm

The more you look for bad news, the more you'll find it.
misterjuanperalta
Saint
Saint
 
Posts: 515
Joined: August 21st, 2014, 7:27 am

Re: Diagnosed with Peripheral Nerve Hyperexciteability (PNH)

Postby leaflea on December 8th, 2014, 12:39 am

Juan,

That's the thing - this info is EASILY available, I came across it within the first few weeks of bfs but there's two or three strange things about it. This isn't new info to me, just thinking about it more and then Raindog posted that link, but for other reasons than what I found to be a major, MAJOR finding. The study he posted also deserves some discussion about the rarity of this bfs condition. Strange things:

1. No one ever talks about it around here - for a bunch of health phobics (present company included) I find that a little odd

2. No one's turned up with a malignant or benign tumor (HOORAY!!!!) - so we as a group don't match the two studies linked above. We have a lot of valuable information here over the years, researchers could find in us a treasure trove!

3. Neuros are not testing for these things as standard practice - it seems only at large clinics such as Mayo and Cleveland.

I'm no expert, but I wasn't born yesterday either. It seems these things are worthy of much more discussion than they get.


btw Raindog, I read a different comment you made about this study years ago and agree - it was most likely the lifestyle that caused the cancer, not the bfs that caused the cancer (although I think I remember that only 3 of the 5 or 6 in this study were smokers). Regardless -- bfs, according to at least that study, can be a harbinger/omen. And it isn't just lung cancers from other things I've read (simple wikipedia I think) but also breast, prostate, etc which are not as linked with lifestyle. Plus, 20% of lung cancers in females are not related to smoking.
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: Diagnosed with Peripheral Nerve Hyperexciteability (PNH)

Postby raindog on December 8th, 2014, 5:35 am

leaflea wrote:Juan,

That's the thing - this info is EASILY available, I came across it within the first few weeks of bfs but there's two or three strange things about it. This isn't new info to me, just thinking about it more and then Raindog posted that link, but for other reasons than what I found to be a major, MAJOR finding. The study he posted also deserves some discussion about the rarity of this bfs condition. Strange things:

1. No one ever talks about it around here - for a bunch of health phobics (present company included) I find that a little odd

2. No one's turned up with a malignant or benign tumor (HOORAY!!!!) - so we as a group don't match the two studies linked above. We have a lot of valuable information here over the years, researchers could find in us a treasure trove!

3. Neuros are not testing for these things as standard practice - it seems only at large clinics such as Mayo and Cleveland.

I'm no expert, but I wasn't born yesterday either. It seems these things are worthy of much more discussion than they get.


btw Raindog, I read a different comment you made about this study years ago and agree - it was most likely the lifestyle that caused the cancer, not the bfs that caused the cancer (although I think I remember that only 3 of the 5 or 6 in this study were smokers). Regardless -- bfs, according to at least that study, can be a harbinger/omen. And it isn't just lung cancers from other things I've read (simple wikipedia I think) but also breast, prostate, etc which are not as linked with lifestyle. Plus, 20% of lung cancers in females are not related to smoking.


What if they have been passive smoking for years and years? Far too much information relates cancer to lifestyle and environmental habits and indicates as being preventable in my opinion.

Now in the one published we are referring to the cancer was a cause of the fasciculations and not the other way round.
User avatar
raindog
Saint
Saint
 
Posts: 1289
Joined: March 17th, 2008, 6:51 pm
Location: Barnsley UK

Re: Diagnosed with Peripheral Nerve Hyperexciteability (PNH)

Postby leaflea on December 8th, 2014, 9:19 am

Absolutley - cancer caused fasics. It is the immune system recognizing an invader and letting off horomones. Such a complicated body.

I agree, cancer very often is preventable or caused by environmental factors. That doesn't mean some of us on the board aren't immune to those factors. As a whole, we seem to be a healthy bunch, but many of us may have been raised in smoking households or had a basement bedroom in a home totally filled with radon unbeknownst to anyone. Dana Reeve had zero risk factors for lung cancer and died at 44. In 20% of females with lung cancer, some horomonal thing makes them more susceptible. There is such stigma associated with the cancer I wonder if there might be more that people report as something else.

Good news is, no cancer reports here. Just pondering all this because of those studies I can't seem to ignore. The one that found 1/3 of the people with Benign Tumors is interesting, published this year out of Mayo. But it contradicts the Oxford study -- both of them studied people with fasciculations and/or cramps.
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: Diagnosed with Peripheral Nerve Hyperexciteability (PNH)

Postby J4son on December 9th, 2014, 2:10 pm

leaflea wrote:and then there is this one that sort of flies in the face of it. out of 37 subjects NONE had malignancy, but 12 had benign tumors. What the heck - I can't make heads or tails of this. Anyone?

http://www.ncbi.nlm.nih.gov/pubmed/23836298


I don’t know if that counts but I suffered for two years with a benign bone tumor located in my right foot (cuboid bone). Those two years were living hell, worst pain in my life; non-stop 24/7 horrible chronic pain. I had to take ibuprofen (Advil) every four hours even at night for two years. Since it was a kind of tumor that never turns malignant some doctors suggested that I live with it saying it usually goes by itself after 3 to 10 years. Knowing that I couldn’t live ten years like that I asked for it to be removed. The first attempt by radiofrequency ablation didn’t work. Then two years after the onset of the pain a radiologist removed it successfully with the same procedure under general anesthesia. The buzzing in my leg and foot (opposite leg than the tumor) started at that moment (can’t recall anymore if it was just before the ablation or just after.) Twitches started 6 months later. I told all this to my neuro but he didn’t make any connection between this and the twitching.
J4son
Selfless giver of time
Selfless giver of time
 
Posts: 163
Joined: November 21st, 2013, 12:04 pm

Re: Diagnosed with Peripheral Nerve Hyperexciteability (PNH)

Postby leaflea on December 9th, 2014, 5:26 pm

Who knows? Maybe so? Although what I read often the twitching etc. precede the discovery of any tumor by months or years. It is the hyperexcitability that is the harbinger or omen signalling to look for something else. Which is why I'd think more of us would want to know about this and why more of our neuros should be on alert for this. Problem is, I think our neuros are so specialized and they are looking to rule out things like ALS, MS, Parkinson's...while oncologists would be more aware of this kind of relatively rare presentation of cancer.
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: Diagnosed with Peripheral Nerve Hyperexciteability (PNH)

Postby Ghayes420 on December 9th, 2014, 5:50 pm

I feel I need to step in here for just a moment.

I have seen more different neurologists than anyone on this board.

As we see with Matt, PNH is a condition that can be diagnosed using the latest technology. It's called the cramp fasciculation protocol test, it is a very specific type of NCV. Matt tested positive. I went to Mayo. I twitch everywhere, I mean evrywhere all day everyday with no break. My spine is currently crawling with twitches. I am at 3+ years and progressing although the I have been cleared by the highest trained ALS specialists in our country just two months ago.

Many times, with standard BFS, some fascics here and there on EMG, etc. many neuros won't test for cancers. However my first neuro as well as a the Mayo clinic ran what is called the 'neuro paraneo-panel'. This tests for various antibodies as well as various proteins that are indicative of cancer. I have been negative twice now.

The words from the doctor at the Mayo clinic were, "you were negative for cancer which I suspected since you tested negative for PNH and aren't showing enough for a paraneoplastic syndrome." She said this even though I have visible fasciculations as well as fascics detected on EMG.
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: Diagnosed with Peripheral Nerve Hyperexciteability (PNH)

Sponsor

Sponsor
 

PreviousNext

Return to General Topics

Who is online

Users browsing this forum: Bing [Bot], Yahoo [Bot] and 1 guest