Fasciculatoins proceeding MND

General Topics

Moderators: JohnV, Arron, garym

Re: Fasciculatoins proceeding MND

Postby christo on July 12th, 2014, 5:44 am

I agree, awesome post.
christo
Hero
Hero
 
Posts: 349
Joined: October 27th, 2012, 5:04 am
Location: France

Re: Fasciculatoins proceeding MND

Postby Ghayes420 on July 12th, 2014, 9:13 am

Little Lost,

It is nice to finally run into you on this forum and sorry it is under these conditions.

I greatly enjoy reading your articles, writings, and perspectives. Thank you for your contribution here.

Just wanted to clarify that I do agree with you about PubMed and that these articles are useful for those learning and doing research. However, I highly doubt that some elderly neurologist's such as Eisen, Miller, Smith, etc really take the time to read many of those articles because their experience in the clinical setting gives them more knowledge than can be gained in a paper. Of that list of doctors I wrote, when I mentioned the Walton Report, none of them even heard of it, thus I feel proving that point. I do think they are beneficial to the research community and those looking for cures, correlations, more PhD's rather than MD's. But again, this is just my opinion base on my experience.

Thanks again for posting and thanks again for your insight. I do enjoy your thorough explanations and postings.

Cheers,
Greg
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: Fasciculatoins proceeding MND

Postby Little Lost on July 12th, 2014, 8:13 pm

Thanks for the feedback on my post which is appreciated. You never know if anyone reads what you actually write. So thank you.

I have gained so much expert advice on this forum it is me that should be thanking you.

HI Greg....nice to meet you also. Always love your posts especially when you are challenging someone or something. You seem good at that and are very organised with your arguments and counter arguments. You have raised many good points in your past posts and often offer different ideas on some topics. You make me think and your own research has helped myself and many others. I know you have left no stone unturned on route to your own diagnosis, and what you write I trust.

I hope this topic is no longer like a stick of dynamite to newbies, nobody is hiding anything .......well apart from that huge tub of chocolate ice cream under the salad bag in my fridge. .....the one the kids better not find.
Little Lost
Selfless giver of time
Selfless giver of time
 
Posts: 177
Joined: July 3rd, 2013, 7:17 am

Re: Fasciculatoins proceeding MND

Postby jerseygirl on July 17th, 2014, 4:02 pm

Johnny, Greg, Gary, Mitra and any of you other angels that have calmed people like me down with health anxiety. .. Thank you from the bottom of my heart. .. You are all very special human beings. . .
jerseygirl
Selfless giver of time
Selfless giver of time
 
Posts: 110
Joined: January 10th, 2012, 8:40 pm

Re: Fasciculatoins proceeding MND

Postby raindog on July 18th, 2014, 6:05 pm

RobJ wrote:u r in a bubble.

gary,
if im violating a forum rule ban me, dont threaten me...read ur post.
im not violating any rule or goal.

i was asked to prove a statement made in another subject that was closed.

im being told my data is inaccurate again..suggest u ban those. those are people that r not informing and u r well aware of that. lots more data out there that u r aware of

my intent is no harm. my intent is to inform.

too many r n denial. the only way to get over there fears is to b informed.

stop lying to these people that r suffering...its not real...its fake.

r u asking for more proof more info...

look at these posts because i informed facts not opinion....


“The problem with the world is that the intelligent people are full of doubts, while the stupid ones are full of confidence.”
― Charles Bukowski

Image
User avatar
raindog
Saint
Saint
 
Posts: 1289
Joined: March 17th, 2008, 6:51 pm
Location: Barnsley UK

Re: Fasciculatoins proceeding MND

Postby RobJ on July 19th, 2014, 10:12 am

Fasciculations preceding MND...ALS is just one of the many. I never said ALS.

It's not as rear as you make it out. It's quite common in SMA and SBMA and some muscular disorders to fasciculate well in advance of weakness or EMG changes. I've know people that I've talked with that twitched in their teens only later to be diagnosed with ALS, in-approrpriately, then diagnosis changed to another MND 30 years later. I may be one of them. I've yet to show changes but I've been told even after 20 years, I'm not out of woods. Not by Dr. Google...or vet....etc. I've had every test you can imagine, all negative, but still I'm a very interesting subject because I fasciculate and have an elevated CPK for 20+ years. Nothing sinister on EMG. But I still see a neurologist. They want to run tests that my insurance company won't pay for....I won't do it unless my Son or Daughter show changes...Lately, my son started to fasciculate and his hands and feet are cramping..might be time to do more tests....

My current chart says:

Chronic Fasciculations
Idiopathic HyperCKemia


Interesting that you allow people to call me ignorant, un-intelligent, un-educated..........etc....I've read, purchased, talked to a lot of people, lot's of

After 1 year, you've got a good chance no MND
after 2 years, you chances of no MND even better
After 4 years, you possibility is the same as the normal population

I'm not being malicious.
RobJ
Senior Member
Senior Member
 
Posts: 86
Joined: February 15th, 2014, 8:48 am

Re: Fasciculatoins proceeding MND

Postby J4son on July 19th, 2014, 10:43 am

RobJ wrote:Fasciculations preceding MND...ALS is just one of the many. I never said ALS.

It's not as rear as you make it out. It's quite common in SMA and SBMA and some muscular disorders to fasciculate well in advance of weakness or EMG changes. I've know people that I've talked with that twitched in their teens only later to be diagnosed with ALS, in-approrpriately, then diagnosis changed to another MND 30 years later. I may be one of them. I've yet to show changes but I've been told even after 20 years, I'm not out of woods. Not by Dr. Google...or vet....etc. I've had every test you can imagine, all negative, but still I'm a very interesting subject because I fasciculate and have an elevated CPK for 20+ years. Nothing sinister on EMG. But I still see a neurologist. They want to run tests that my insurance company won't pay for....I won't do it unless my Son or Daughter show changes...Lately, my son started to fasciculate and his hands and feet are cramping..might be time to do more tests....

My current chart says:

Chronic Fasciculations
Idiopathic HyperCKemia


Interesting that you allow people to call me ignorant, un-intelligent, un-educated..........etc....I've read, purchased, talked to a lot of people, lot's of

After 1 year, you've got a good chance no MND
after 2 years, you chances of no MND even better
After 4 years, you possibility is the same as the normal population

I'm not being malicious.


Rob, I Still see a little contradiction in what you're saying. first you said that you know people whom fasciculated during their teens and later were diagnosed with MND (I guess that if you're mentioning this, it's to prove that early fasciculations and later MND diagnosis could be related). you also said that yourself after 20 years is not out of the wood... Yet later on, you pretend that after 4 years risks of MND is the same as the normal population. hmmm ... How come? so you're out of the wood after 20 years or not? Am a little bit lost here...

Once more and with all due respect I prefer to trust the Mayo Clinic study that followed many people with BFS for decades and found that NONE of them, no one, o%, Nill, void, nada developed MND... So let's agree to disagree and lets close that subject :)
J4son
Selfless giver of time
Selfless giver of time
 
Posts: 163
Joined: November 21st, 2013, 12:04 pm

Re: Fasciculatoins proceeding MND

Postby garym on July 19th, 2014, 4:31 pm

RobJ wrote:Fasciculations preceding MND...ALS is just one of the many. I never said ALS.

It's not as rear as you make it out. It's quite common in SMA and SBMA and some muscular disorders to fasciculate well in advance of weakness or EMG changes. I've know people that I've talked with that twitched in their teens only later to be diagnosed with ALS, in-approrpriately, then diagnosis changed to another MND 30 years later. I may be one of them. I've yet to show changes but I've been told even after 20 years, I'm not out of woods. Not by Dr. Google...or vet....etc. I've had every test you can imagine, all negative, but still I'm a very interesting subject because I fasciculate and have an elevated CPK for 20+ years. Nothing sinister on EMG. But I still see a neurologist. They want to run tests that my insurance company won't pay for....I won't do it unless my Son or Daughter show changes...Lately, my son started to fasciculate and his hands and feet are cramping..might be time to do more tests....

My current chart says:

Chronic Fasciculations
Idiopathic HyperCKemia


Interesting that you allow people to call me ignorant, un-intelligent, un-educated..........etc....I've read, purchased, talked to a lot of people, lot's of

After 1 year, you've got a good chance no MND
after 2 years, you chances of no MND even better
After 4 years, you possibility is the same as the normal population

I'm not being malicious.


Ok Rob, fair enough, you never said ALS. Most people here associate mnd=als, but of course that is not 100% the case. As for you, and your time table, I personally hope that you never go on to develop anything bad and given the length of time you have had sxs, you should be in the clear....however, if your doctors are telling you that you still have reason to be concerned, they are definitely more educated about your condition than ANYONE on the internet and you should listen to them. The difference between what you are describing, and what most of us here are talking about in my opinion, is that your Doctors haven't given you the all clear. The consistently elevated CPK you are experiencing is not a typical part of bfs. So your docs take a wait and see approach with you.

the vast majority of us here, have been told by neuros to get on with it, and no need to worry because most of us have no other issues besides the fascics. I would argue that it is impossible to twitch more than a year or so, as a result of something sinister, without any other signs or sxs popping up. Given everything we know about the disease process and progression, other abnormalities would show up. Now like I said previously, fascics for years doesn't exclude any of us from getting mnd, but it doesn't increase our odds either. So, based on years of study and real world evidence, if you have been dx'd with benign fasciculation syndrome, you absolutely do not need to wait after being cleared by a qualified neuro....unless of course that neuro tells you that you need to. There is a big distinction between those two scenarios.

Finally let me say that I didn't believe that your were being mailicious and I truly hope that your children do not ever experience this or any other neurologicl condition.

Gary
garym
Moderator
Moderator
 
Posts: 1889
Joined: August 23rd, 2003, 1:24 pm
Location: Texas

Re: Fasciculatoins proceeding MND

Postby TwitchyDoc on July 20th, 2014, 12:39 am

RobJ is right that in SBMA (kennedy's disease), fasciculations often appear years (I even remember a description of a family in which all affected men show generalized fasciculations a decade before symptoms). SBMA is hereditary but of course it appears also in patients with no family history. This disorded affects only men with women being carriers so you can imagine that it can pass down the generations through daughters and then appear in a male.

Anyway, SBMA is bening, causing some disabilities usually in 20-40 years, generally not decreasing the lifespan.

On the other hands, BFS is also hereditary, at least one of its form. Described even by prof. Eisen but unfortunately with no references where he learned that. Increased CPK (slightly) is a known part of BFS described in literature.

But as RobJ implied, there are other MNDs that might not even be known as they are atypical and hence diagnosed as 'lower motor neuron disorders', typically. But these are generally benign or very slowly progressive, as can be read - but the literature on this topic is extremely sparse.
TwitchyDoc
Saint
Saint
 
Posts: 1169
Joined: August 7th, 2010, 7:30 am

Re: Fasciculatoins proceeding MND

Postby Little Lost on July 21st, 2014, 11:22 am

Hi Robb,

Firstly please excuse typos I am on bouncy train trying to use tiny screen and tiny keyboard.

It is right then to say you have other presenting factors on top of your fasciculations. You don't have fasciculation in isolation and have idiopathic hyperCKemia which is chronic.

I feel the anguish you must have, as this puts you in a different ball park. When this started for you 2 decades ago there was no correct diagnosis pathways for this condition available for medics. Prelle et al however gathered all data and devised one about 9 years ago.

I am sure you will know all this, but I wanted to describe a wee bit about this condition so those reading can understand that at some point on this topic the wires have not just been crossed here, but have additionally become a bit tangled.

So a patients test comes back high CPK. ( note CPK and CK are interchangable ). What to do what to do.......There have been numerous posts on the causes of this and a few weeks later it is usually retested and resolves normally or slight elevated.

Ah but what happens if it stays up , it is high high, and it is not a transient increase, the dam think wont go down, and the patient is asymptomatic...... no clear symptoms that may have caused it, this goes on a bit....how should it be investigated. That is why medics follow flow charts to a diagnosis. ( medics use pathways for most conditions.)

So this is what most places including UK now do when faced with this puzzle of chronic raised CPK. Note these are my rubbish words official pathway uses much bigger impressive articulate phrases, but being on train this is all I got.

Stage 1: accurate clinical history including questions on cardiac health, does patient inject regularly intramuscular as in diabetic, regular heavy sports, alcohol abuse, regular binge drinker, cocaine consumption, use of certain medication such as lipid lowering statins, dexamethasone,other drug toxicity, all these increase CPK. Is the patient epileptic, fits damage muscle and release CPK. what about muscle mass, people who have above average muscle mass naturally have higher serum levels.

Stage 2: physical examination, like a detective, any physical signs of neurological, cardiac, liver, kidney signs etc, I.e. anything obvious. Raised Serum CPK is often a biomarker of myocardial injury, however the patient does not have a damaged heart.( which is obvious)

Stage 3: routine lab work looking for the common endocrine causes of raised CPK such as thyroid, parathyroid, liver,kidney,. Define the elevation, is it increasing, is it stable, slight elevation and severe elevation are often associated with different conditions. Various other biochemical tests to provide other valuable information reguarding source, heart, brain, skeletal etc.

If stage 1 to 3 are clear the patient is passed on to neuromuscular specialist for the next stage of their work up

Stage 4 : This will normally include muscle biopsy, and EMG in the work up.They are looking for any neurological explanation as to why skeletal muscles are releasing this kinase. There is an extensive list, way beyond this post or my knowledge ( more TDs area ), but do include hereditary myopathies, MNDs can produce elevated CPK but normally other signs appear on EMG such as denervation as the damage is releasing the CPK. ( also lack of antitoxins). They also look for a range of adult onset dystrophies, which can sometimes be hard to spot and can take years to show up, and have little impact ( not all are life changers). Others include myotonia, and certain inflammatory conditions such as systemic sclerosis.

Concurrent with above work up the patient will be tested for malignancies known to cause chronic raised CPK. This includes conditions such as malignant hyperthemia contractive testing.

As elevated serum CPK is a widely used diagnostic marker for carriers of Duchenne, the patient should also undergo genetic testing and if positive should be offered preconception advice.

So that is the recommended approach. In 80 percent of cases every test thrown at the patient will come back negative with no clinical or histopathology evidence of neuromuscular or endocrine diseases. Only then can it be defined as idiopathic elevation, i.e. the diagnosis of idiopathic hyperCKemia is made as a diagnosis of EXCLUSION. The patient is reassured no long term consequences are expected.

Robb you have probably been quoted the long term follow up studies one involving 114 cases of chronic idiopathic hyperCKemia and the other was with 31 patients over 7 years and all were fine. However you live in a situation where you have been told to wait and see, different from most of us on this forum who have been told to *beep* off and never darken the neurologists waiting room again.

So Robb I am sorry that you feel attacked on this board and you are right to hold your own. However you are being followed up different from most of us because your case IS different. We have fasciculation on our side of the scales, whereas you have fasciculation and chronic idiopathic hyperCKemia on your side. We just don't weigh the same, clinically we are not the same, so of course the precautionary advice and rules that you were given, and which you then wrote here do not apply to the majority of us on this board. You needed that little bit extra.

So wires have been crossed and tangled and puss has got a bit angry because she can't find the beginning and end of the string. There is really no drama here......except for this stupid lady that is sitting opposite me on this train, she has been having a conversation about the Ebola outbreak, she is being very loud and dramatic and she obviously knows nothing about it, however everyone on the train is moving further away from the passenger next to them.../fascinating.

I hope you get the fantastic support on this forum, the support which has allowed me today to sit opposite said stupid woman on train, instead of spending days hopping up and downstairs strength testing and telling my bosses I am working from home which was kind of hard to do when you work in a science lab and hospital ward.
Hx

Work on CK and studies done by people like Prelle et al who defined the diagnostic pathway. Malasky BR et al describes follow up study. Rowland LP also follow up.
Little Lost
Selfless giver of time
Selfless giver of time
 
Posts: 177
Joined: July 3rd, 2013, 7:17 am

Re: Fasciculatoins proceeding MND

Postby misterjuanperalta on August 25th, 2014, 8:38 am

I read a similar study that talked about the same thing. It does not mean it's the case all the time. All it means is that it could happen, albeit very rarely. Some people post these studies to find out if this has been discussed in the forum before. I don't think harm is intended. If so, shame, shame and shame. Regards.
misterjuanperalta
Saint
Saint
 
Posts: 515
Joined: August 21st, 2014, 7:27 am

Re: Fasciculatoins proceeding MND

Postby misterjuanperalta on August 31st, 2014, 1:06 pm

Although "rare", it can happen. But then again, although rare, you can get hit by lightning. Time is one's best indicator.
misterjuanperalta
Saint
Saint
 
Posts: 515
Joined: August 21st, 2014, 7:27 am

Re: Fasciculatoins proceeding MND

Postby elliottok on September 8th, 2014, 7:21 pm

Rob,

you're a *beep* idiot. Twitchydoc, you're right up there with him. Lots of people on this board pretending to be experts when they're not. Doesn't help anyone and creates TONS of confusion and misinformation. The number one answer on this forum should be "listen to your doctor!" If your neurologist says you are okay, then you are okay. No one on this forum knows better than a patient's own doctor who has looked at the patient's history and performed clinical exams and/or EMGs.
elliottok
Senior Member
Senior Member
 
Posts: 50
Joined: January 17th, 2014, 1:54 pm

Re: Fasciculatoins proceeding MND

Postby TwitchyDoc on September 9th, 2014, 1:14 am

elliottok: shut up, if you have no idea what this thread is about. I have not started it and there is not a single misinformation, at least not from my side. My only contribution to this thread was about SBMA (aka Kennedy's diease), which is a benign variant of MND that does manifest with fasciculations and cramps in those who inherited it. If you say that I am idiot because of posting that (which is actually reassuing to know that there are MNDs that will not kill you), I am really sorry for you and your intellectual abitilies.
I could call you idiot as well because you do not even know how to interpret information properly.
TwitchyDoc
Saint
Saint
 
Posts: 1169
Joined: August 7th, 2010, 7:30 am

Re: Fasciculatoins proceeding MND

Postby J4son on September 9th, 2014, 3:58 am

Hey guys calm down :) Elliottok, I fully agree with what you said about trusting our own doctors and about the fact that a doctor knows his patient’s case better than anyone else. On this I’m 100% with you. But attacking twitchydoc and calling him names is unfair since he is someone who made very important contributions to this board. In the beginning a lot of his posts used to scare me but with time, I found that most of what he says make sense and is reassuring, plus it is often backed up with solid scientific evidence. The guy is a doctor and I assure you that he knows his stuff.

On another note, I wonder why most people here (and I was one of them) have trouble trusting their doctors. Is it because of the nature of this condition (BFS) or because all of us suffered from health anxiety long before developing BFS? Sometime i feel that the behavior that a lot of us develops toward this condition has a lot in common with depression, obsession, OCD and other mental conditions.
J4son
Selfless giver of time
Selfless giver of time
 
Posts: 163
Joined: November 21st, 2013, 12:04 pm

Re: Fasciculatoins proceeding MND

Sponsor

Sponsor
 

PreviousNext

Return to General Topics

Who is online

Users browsing this forum: No registered users and 9 guests