Hi everyone -Just been mulling over this question in my head and wanted to know the viewpoint folks have on it. If i am wrong in any part of this please correct me. Okay so ... Even though we don't know what is causing our condition, do we all agree that there has been damage to the central / peripheral nervous system? Im still a little muddy on the specifics between peripheral, central, small fiber, and motor. However can we all agree that at some point in the past (or still currently) damage has been (is being) done to this system? And that would basically mean demyelination of nerves, correct?And do we also agree that there's a possibility that this may be autoimmune in nature, and therefore it may very well be our own bodies doing this?This is where I get confused. Because that is the very definition of a number of conditions that actually do have names. The only major difference I see is in their *major* symptoms. MS typically would present with numbness of large surface area, or blindness. Guillan Barre would present often times with Paralysis of limbs. Much more extreme things. But you also have things like CIPD. Which presents with much milder, ongoing symptoms and is also a direct result of past (or current) ongoing damage being done to the nervous system.But I could very easily see someone settling in on this site and having CIPD. And never getting the immune system treatment that would be recommended, and necessary for improvement. I guess im a little worried that so many folks are so comfortable not knowing whats causing this. I think of Seventhcandle .... that guy is suffering to the point of extremes. Worse symptoms than I think any one on here has reported, at least when I spoke with him on the chat. What if he has some autoimmune condition but never got the Lumbar Puncture, to rule that out? He could go on treatment and improve, posssibly recover, but he -like many folks here - may just say "i guess its BFS" and give up ... A lot (many many!) of these conditions have similar treatments amongst eachother. But why wouldnt a BFSer maybe consider prednisone, or some other immune suppression treatment - just to see if it works? When I was on the lyme forums tons of people were put on immune suppression as a primary treatment regimen, and they got worse because theirs was a bacterial infection. But why dont I read about everyone here being put on it ? It seems like the assumption *should* be autoimmune, even if temporary or mild ! I cant imagine that we all have the exact same thing going on here. There are way too many variations of these symptoms. And way too many possible causes for them. I just feel bad that a lot of folks may end up here, and continue suffering severe problems, but have resigned themselves to suffering because they believe its not an actual treatable condition. If the EMG and NerveCond and ... for good measure ... a spinal tab were done with all normal results .... then I can see someone calling themself a BFSer .... But if all three of these arent done .... it seems remiss of the individual, and doctor .... to not at least check. I mean the spinal tap alone can reveal a whole batch of explanations that no MRI or EMG would ever reveal .... So maybe my question is .... why don't BFS'ers try prednisone or IvIG ... or at the very least, why haven't we all had a Lumbar Puncture done?Thanks!
Questioning CNS Damage from Unknown Cause
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MarioMasher
Well-known member
I don't agree that everyone here has nerve damage. In my personal opinion, BFS is either one of four things. It is either some weaker variant of fibromyalgia/chronic fatigue, or it is post viral, or it is some form of IBS/nutrient malabsorption, or it is just uncontrolled adrenaline/stress chemicals. Every time I think I know which one of those four it is for sure, it will kind of wane and go away and then I will think I have managed to control it. And then at some point in the future it will come back and I will change my mind which one of the four I think it is.But in no way do I think I have any sort of permanent nerve damage. I think I have very sensitive nerves, for one reason or another, but if you are disciplined about stress and diet and getting enough sleep and exercise it is pretty controllable.And I know that you and I will differ on this, but I think the absolute worst thing a BFS newbie can do is start obsessing over treatments and obessing over getting to the root cause over how you got this. From my experience, fear leads to stress, and stress leads to worse symptoms. And worse symptoms lead to obsession. And once you have obsession now you have OCD on top of the BFS, which makes it even worse. And then you just wind up in a searching for answers spiral, and you become one of the lost ones.If anyone is reading this who would like the advice of a 5+ year veteran of BFS, my advice is the same advice we learned in the movie Wargames. Sometimes you have to learn the benefit of futility. Just like Tic Tac Toe, sometimes the only winning move is not to play.
I could argue this original post on so many levels but that would just require more energy then I have to spare tonight...so I will just say that I more then 100% agree with what Mario stated above and can vouch from my own personal experience with this garbage that he is absolutely correct and wish I had listened to him 3 yrs ago...and really wish others would listen now....Dont go down this road Burger..it only leads to a dead end..promise you that ..Take careRobynn LeAnne 
I respect your viewpoint, but don't agree that doing nothing is the solution. My brain has never worked that way. And thank God too. Because of this propensity I have, I will not be dying of AIDS. My thirst for knowledge resulted in getting myself on PostExposureMeds within 7 hours of exposure to HIV, and literally saved my life. The doctor was amazed how much I knew, and how quickly I got myself to the hospital and got the first pill down my throat. So there are two ways of looking at it for sure...Dead ends are okay. They mean you tried, and exhausted the possibilities. How many stories have we all heard where the guy caught his cancer too late because he ignored those headaches?I dont plan to be one of those people, if I can help it.However, I do *not* recommend this approach for people who get stressed by following this process. As I stated above.Due to my continued searching I ended up on the phone with the poster child for HIV Post Exposure Prophylaxis long term toxicity. His name is Edmond McNack. From takin the same meds I took, which have made me unwell since, he ended up with a documented case of Sarcoidosis. In speaking with him (after weeks of doing what many discourage - researching), he told me he's spoken to many people in my shoes, who took the same meds, and have had the same symptoms, and were ultimately definitively diagnosed with GBS or CIDP. So for me .... that may be my explanation. Purely because it seems to be a common thing for those who took those toxic meds. So for me ... autoimmune suppression may restore full function. So for me .... researching may have saved my life. I will need a Lumbar Puncture to know.Alternately, I might have just p*ssed off my CNS by working out too hard, eating ONLY eggwhites and 1 gallon of water, and not replenishing electrolytes for 3 weeks, because I wanted a six pack!!!! LOL! You never know where you'll end up. But I respect and agree with both of you that most will just end up with stress and dead ends. So I apologize if I am upsetting anyone with this. Its not my intention.
MarioMasher
Well-known member
I personally think you are great new addition to the board. So no I don't think you are stepping on any toes or breaching any type of protocal or *beep* anyone off. Frankly I think it is nice to see a certain level of proactivity around here, as opposed to the whining and moaning you normally get from BFS newbies (trust me, that includes me too, I was once there myself). The only reason I write what I do is not to shoot you down, but because I try to remember that for every 1 person who responds to my posts, 100 will read them. And I just don't feel comfortable telling people who are clearly teetering on the edge of a nervous breakdown that they need to PURSUE, PURSUE, PURSUE NOW NOW NOW! I know full well what BFS can do you to mentally the first year or so, and I just wouldn't feel right about it if I told people they need to start digging and seeing doctors and pursuing treatments right now OR ELSE. I think that is the absolute worst thing I could say to 95% of the people who stop by this board.Maybe you have a personality and a mental toughness that other people with BFS don't have. If you do, more power to you. But most people with BFS in the mental states they are in do not have that emotional capacity, and they are clearly not ready to start visiting doctors and getting tests and submitting themselves to poking and prodding. What they need to do more than anything right now is sit down, do something other than think about BFS for a while, and chill the f out. Those are the people I am speaking to when I post this stuff. I don't mean to shoot you down or try to come off as antagonistic. I just try to remember who the people are I am talking to on this board, and what the most responsible thing is I can say to them. And in 95% of cases, the most responsible thing I can say is to not think about BFS for a while. And I am saying like for months at a time if possible. Maybe even a year.Believe me, if you are the type of person who will benefit from poking and prodding, and you want to be the guinea pig who goes out and tests everything for the rest of us, have at it. I awould be thrilled if you would be my guinea pig. But I have been around long enough to know that I can't be the guy who is that diligent and proactive, I just don't have the emotional strength for it. And and I know that most other people here can't handle that kind of obsesson either, it would just absolutely overwhelm them.Believe me, if you went out and found the cause of BFS, I would be the first person to thank you. And to cherry pick off of your research and try the cure for myself. But I do think you have a level of proactivity here that other people shouldn't have. Which, again, is why I write the kind of stuff that I do. I try to think of what is good for everyone.
I can tell you why we do not have LP.because it is NOT a screening procedure. It is a kind of spinal intervention, painful and not 100% safe for the punctured person (the risk of fatality, as far as I know, is higher that the same risk during regular blood tapping). LP is usally prescribed in case of absolute need, should be done by really experienced HCP... LP is a diagnostic mean to see you you have CNS inflammation - meningithis, meningoencephalitis, etc., or if you have or had any viral (or even bacterial) infection smasching your hematoencephalic barrier.People in BFS usually might be post-viral persons, but LP shows immunoglobulines only in acute period of brain inflammation, and the more is time between the viral infection and the LP, the less is the point to make it.Moreover, for most of us, probably, there is nothing related to demyelinisation. At least, considering how many of us have clean EMG/MRI, it is not confirmed ny neither EMG not MRI. Looks like our troubles are more in the field of ionic channels, hyperexcited muscle membranes etc.There is also no evidence of central nature of BFS, i.e., there is nothing leading to an idea of having our brain motor functions involved (except maybe those of us who have too much of excitation of motor zones, but excitation does not mean demyelinization). For many of us CNS plays crucial part in the game but in another way - via structures responsible for stress and emotional reactions. like pituitary gland or amygdala and frontal lobes. I believe those of our cohort who are GAD/OCD sufferers, have inherent specific features of those structures and I do not see how LP can help us )))Prednisole is a heavy drug to be used not like aspirine. it is a massive anti-inflammatory agent, affecting all the body and causing quite clear adverse reactions, also depressing your immune system in quite a severe way. it is usually prescribed also in case of absolute need, where adverse reactions could be tolerated compared to life saving. In most of BFS cases, as you can see on this board, simple things like proper diet, strict day schedule, moderate physical activity and relaxation drugs could be helpful, and our neural damage, if ever, seems ot be recoverable. More though cases, of course, need more treatment, but that is rather when some of our fellows have prominent neuropathies or spinal cysts, etc.I agree with Mario on most of his comments to this post
)))Prednisole is a heavy drug to be used not like aspirine. it is a massive anti-inflammatory agent, affecting all the body and causing quite clear adverse reactions, also depressing your immune system in quite a severe way. it is usually prescribed also in case of absolute need, where adverse reactions could be tolerated compared to life saving. In most of BFS cases, as you can see on this board, simple things like proper diet, strict day schedule, moderate physical activity and relaxation drugs could be helpful, and our neural damage, if ever, seems ot be recoverable. More though cases, of course, need more treatment, but that is rather when some of our fellows have prominent neuropathies or spinal cysts, etc.I agree with Mario on most of his comments to this post Since you requested responses from experts, I might be in the wrong place but I will give you my 2 cents. First, I say to you, go for it. Do all the research and testing you can personally handle. I did the exact same thing when I was new, and I have to say that like you I really wanted to know what caused my bfs. I did tons of research, learned a bunch, formed opinions and theories, saw top-notch docs and in the end, I couldn't find a clear answer. I did, however, come to the belief that my bfs is due to micronutrient imbalance at the cellular level. Many believe this is due to potassium channel blockers, but I lean toward sodium....anyway, maybe some day I will get my answer. I hope that you find yours.take care,gary
jessica1,Cipro is a strong antibiotic, so it might be administerd in case of infection, often after viral ones to treat possible bacterial problems like pneumonia after flu, so it does not exclude infection route Then, Paxil is a SSRI, Ambien is GABA enhancer - they are known for inducing twitches, I think, primarily because of their complicated and mixed central neural activity (at least my own twitches were greatly worse on rexetine and started gradually decreasing about 2 weeks after complete withdrawal). By the way Paxil and Ambien are ususally prescribed to severly stressed people so that mught be just a coincidence because your immune system might be already damaged by stress, and some extra 'paradoxal' action form the drugs might just add some sensitivity). Certain antibiotic, like based on tetracycline, have for sure neurotoxic properties, so they causing degradation of grey matter (not myeline), so neurological effects are not uncommon.
Then, Paxil is a SSRI, Ambien is GABA enhancer - they are known for inducing twitches, I think, primarily because of their complicated and mixed central neural activity (at least my own twitches were greatly worse on rexetine and started gradually decreasing about 2 weeks after complete withdrawal). By the way Paxil and Ambien are ususally prescribed to severly stressed people so that mught be just a coincidence because your immune system might be already damaged by stress, and some extra 'paradoxal' action form the drugs might just add some sensitivity). Certain antibiotic, like based on tetracycline, have for sure neurotoxic properties, so they causing degradation of grey matter (not myeline), so neurological effects are not uncommon.christinasgirl123
Well-known member
I had lumbal puncture. twice. nothing wrong with me. nothing even close to any demyelinating process. I was in a really really really bad shape when I got here, I could hardly walk, not lift my arms because my muscles were too heavy and sore. Oh, have you seen my hands video?? The rest of my body was similar, I was a twitching, tremoring , shaking mess with numb spots and parestesias so bad I could not be touched. Fasciculations on my EMG, yes, hyperreflexia , yes,even some beats of ancle clonus, numb spots I could stick a needle in, yes. Not to forget the pain that would not let me sleep. See in this state, they brought me a wheelchair in hospital (they saw me trying to walk and then decided it is not a good idea) and I got a full 2 weeks programme of all possible tests. All they ever found was fasciculations. The tests were very intense you know, once they start hoispital routine here. I guess I had the biggest variety of possible tests on this board. They were taking blood samples daily , they tested me for the wildest and rarest possible neurological diseases (I felt like in a Dr. House movie). Nothing. They told me it will get better. And it wont kill me. And that no actual damage is done to my body. And so it was. I am healthier today than I have ever been in my life, started to work out and feel good. I am OK (OK besides that thing in my spine.....)I did not only have EMG and motor and sensory NCS, I also had TMS and I guess even a handfull of other neurological tests I cannot remember what they were for. I have seen so many neuros there that checked me, I can hardly count them. They said besides the fact that I have pain and twitching and I am shaking all over, I am one of the healthiest persons they have ever seen there. Which I did not find funny then, today I can laugh a bit about it. I totally agree that there are various reasons that can lead to BFS. But if I remember right, noone that got a LP here on the board ever had a result pointing to anything sinister. And so I think for members that had the basic tests done: give your body and mind some peace. And some rest. Every new test, ever new doctor, every needle they stick into you and every blood sample they take from you is doing something to your mind and your body. I believe that our body has a memory. And that any interference will stop the healing process, because it will re-programme our mind to the possibility oof there being anything sinister, and this will just push back out hyperaware body to step one. My conclusion of reading BFS stories on this board over and over and over: there will be no healing before you do not accept the absolute benign nature of this. This is not about suppressing anxiety, it is about the conviction and acceptance. About peace of mind. About the way we treat our body and mind. As long as we do not get there, our mind will not let our body heal, as strange as it will sound. But if you look at the stories on this board, you will see that in most cases, the speed of decrease of physical symtoms was totally linked to the speed of accepting BFS as what it is-benign
You wrote that very nicely!What do you mean by basic tests: GP eam, neuro exam, EMG, MRI...? How much is enough? How can one accept benign if he was not ever told it is benign? ;-(I totaly agree all the waiting, tests, doctors, they suck the energy out and if done constantly you are in circles and you can not get loose. I search reassurance from doctors and they just put me in more misery. I went to Chinese doctor because it is knowledge they can heal many more mind-body things that western medicine. He shoke his head and said my symptoms are way to much for Chinese medicine, he can not help me at all. That was also of course no relief. So problem is if one does not get any confort and can not see the "all benign" nature that most do get on this board. From my tiny country there is not even many chance to se many doctors and find someone who can be reassuring. And until you can not get your mind clear, I guess your body won't change either.BTW: What is LP?
I had all the same tests as Chrissi, and probably even a few more, plus several series of MRI's. An LP is not fun. It wasn't the worst thing I've ever been through, but certainly the most pointless. It was a lot of strain, stress and discomfort for no good reason. It revealed nothing and gave me a massive headache. Our nerves are NOT damaged, NOR are they "demyelinating." No offense, but that is one of the most clinically ignorant things I've read on this forum, ever. This is the very reason we caution lay-people NOT to do their own research because without even a rudimentary understanding of Anatomy and Physiology, one can't possibly interpret what one is reading without drawing random, illogical conclusions such as this. If you really want to understand the root cause of BFS, go to med school, become a neurologist, and devote your entire lifetime to studying it, because even the top experts in the field are stumped. And while you are at it, you will likely figure out that there are FAR WORSE conditions such as **S that are much more worthy of your time, energy, resources and research monies. I would even go so far as to say that our nerves are probably healthier than most, in that they are more sensitive and responsive than the average human's. I don't begrudge anyone the right to do their own research and to desire answers, but your research needs to have a foundation in understanding how the human body works, to begin with. Otherwise, you're not only wasting your time, but possibly causing others needless anxiety, as well. Blessings, Sue
PuppyFurryFunTimes
Well-known member
Mr. Burger, maybe no one studies BFS because it is benign & no one wants to deal with it? I feel my legs are irritated or even inflamed at times, in fact most of the time. I was not like this a year ago... It seemed to start in ONE day! Something just isn't right!!! Please feel free to research for those who are afraid of what they may come across like myself... I appreciate it!
I appreciate it!