Attitude of Neurologists Toward Us

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SirTrouserz

Well-known member
Thank you all for your responces. They were thought provoking and informative. I guess one of the issues that really bothers me about this condition is the attitude neurologist have towards us.

If you went to your regular doctor with a bad rash that was really bothering you, would the doctor say "I see you have a rash. Well, I saw someone with brain cancer this morning, now that's a real medical problem. So I'm not going to treat your rash even though that rash is really bothering you. I don't know how you got it or what it is. If it bothers you maybe you should see a psychiatrist". I mean, I'm really sorry for whoever has brain cancer, but as a patient, I still have an untreated rash so to speak. It's insulting to be sent away with a kind of I don't know, I'm not going to bother to try to explain it to you or treat it, so just be glad it's not something worse. It adds insult to injury. I feel to like I'm to blame for my condtion. I don't want it, don't like it and am troubled by it. If I didn't have anxiety about it, and the steps it took to get to the final diagnosis, (EMG, MRI, etc.) I would be a fool. And it's only my opinion, but I believe whatever causes the twitches also has an impact on our abiltity to manage anxiety and depression. I think there's a link there.

At first I was just so relieved and grateful that it's not something worse and I still am, but I'm not getting treated and I'm still symptomatic. I share in the frustration that you all have and am so glad to have this outlet. I'll be switching primary care docs soon and plan to see another neurologist who I hope will take the time to explain this and offer some treatment. I also plan on writing to whatever neurological board regulates neurologists in the hopes of people like us getting better treatment in the future. Maybe we need a petition or something like that. I appreciate all your input as we move forward with this.
Thanks,
Sir_Trouserz
 
And thanks Steve for your very detailed explanantion. As I try to undestand this condition information like that helps a great deal. I had a few more questions also, so I hope you don't mind.

You said that the twitches are the result of a spontaneous signal produced by excitable nerve cells and these signals cause the muscle fibre to move. I guess this can be due to many things, one of which is the autoimmunity factor you mentioned? What does that mean exactly, an autoimmune responce that results from what? What are the antibodies to VGKC (voltage gated potassium channel)? And how are people treated by Plasma exchange? Since the EMG, MRI, etc., are supposed to rule out nerve damage, does that mean that it may not be detectable? I feel like there's been a 'short circuit' in my nervous system and I don't have the ability to regulate my responces any longer.

You have a lot of knowledge regarding this condition and do a great job putting it in terms that are understandable, so thanks so much for taking the time to share that with us! I have no medical backround whatsoever and that makes it very hard to conceptualize this condition.
Sir_Trouserz
 
I was thinking about other involuntary, spontaneous muscle twitching, such as happens when you shiver, or when you're afraid and your hands shake (such as giving a speech, confronting someone, etc.) It seems there are lots of potential causes.
 
Sir_Trouserz,

The difference between a rash and BFS or BCFS, is that there is usually a cure with a rash. Bad analogy. There is no cure for BFS. Therefore, how do you expect a doctor to ba able to treat you for a syndrom that doesn't have any treatment. I know some people here have had doctors try many different drugs, but I don't think any of them have ever worked. So I rather a doctor tell me this is a benign thing and there is nothing he can do about it than to use me as a human guinea pig and throw a bunch of different drugs at me that will absolutley have no effect on my symptoms. Doctors "brush you off" because there is nothing else they can do but that.
 
Here is another way to look at it.

I don't think there is anyone out there above the age of 20 that can say there is nothing in their body that doesn't bother them. Some have a sore knee, some have a bad back, some have arthritis, some have cancer, some have ALS, some have MS. But us, we have BFS. And like me, maybe some other things like back problems and carpal tunnel.

My point is, if you expect to go your whole life without some physical problems happening to you, then you are fooling yourself and you are setting yourself up for anxiety.

I still don't understand the anxiety that people have with BFS or BCFS. I do understand the anxiety that people have over other nasty diseases. But I would expect most of that anxiety to go away with a BFS diagnosis.

I think it is well documetned that anxiety can exaberate BFS symptoms, so why would people not want to treat their anxiety when dx'd with BFS? That is what I am doing. My anxiety is gone, as so are many of my BFS symptoms.

If you are frustrated with this BFS thing, then my first peace of advice is to get over the frustration and anxiety. Only then will you start concentrating on other things and your BFSsymptoms will become second nature.

Do any of you smoke? Do any of you drink alchohol? Do any of you drink a lot of caffine? Do any of you have anxiety? If you do, then maybe stop those things because it has been documented that all of those things can cause or exaberate muscle twitching.

Not trying to be condensending here because I have been there, but we all need to put things into perspective here. Stop with the "Whoa is me" attitude.
 
What triggers this immune response is unknown, but it could be any one of a number of possibilities including viral, a reaction to certain drugs, stress or anxiety, your guess is as good as mine.

Circulating antibodies attach themselves to the gated element of voltage gated potassium channels and are thought to cause a partial blockage This affects the interaction that takes place within the nerve cell between sodium and potassium, during and after the production of a signal causing destabilisation. This results in the cell becoming excitable once more leading to another spontaneous discharge and so on and so forth i.e. twitch after twitch after twitch. It's not that these cells are damaged it's just that they are not allowed to return to a resting state or switch off if you prefer.

Plasma exchange is thought to work by removing the antibodies that circulate within the bloodstream hence an improvement in the symptoms. However, this is not a cure as they slowly return followed by the symptoms.

EMG's and MRI's should rule out any nerve damage or compression so that just leaves the spontaneous discharges which are the excitable cells firing off a signal providing activity is occurring at the time of the test.
 
I actually never got a BFS diagnosis as my GP doesn't believe it. My neuro just told me it was nothing serious but never said BFS. So I never recieved an explanation of BFS from a doctor. That is when I found this site and I get all of my information here.
 
Where is the rash :unsure: Could it be "SHINGLES" :unsure: Is there pain :unsure: Shingles is a virus that attacks the nerve endings, And I think it can be a precursor to BFS. With all the information I have seen on this forum,including mine. I still beleive that this condition is somehow virual related.
 
My symptoms started with a single, solitary numb feeling in the front of my left shin a loooooong time ago and within several weeks I had full blown fasciculations and was on a plane to Mayo Clinic. I quit my job, slept all day and stayed up all night. Anxiety is what is dibilitating and I took nothing for it back then. Once I got my life back and got used to the idea that I would have good days and bad and some periods of remission (except for the twitching of course) in between, I started to feel better. I also started to believe that I was going to be ok. Then I realized with all the bad things happening around me, that I was one of the lucky ones. I have watched two people die from the dreaded disease we don't talk about. I have several friends with MS and I have one friend who is losing her father to Huntington's all the while knowing that she and her brother have a 50% chance of carrying the gene and developing the disease. I think to myself, yes this sucks and yes I suck at handling it on most days, however, when I think about the fact that I rise each day I'm still here, I sing my praises and say thank you!

You guys are right, its difficult to understand why anything that reeks so much havoc could get so little attention. When I see my neurologist in July I'm going to tell her about this website and share some information with her because she has never given me a diagnosis other to tell me I'm fine. I want her to understand the magnitude of this and how many people suffer with this. Imagine how many people don't even know about this site or bfs, bcfs, pnh and all of the others. At least if she meets another person like me she can refer them this direction! The ALS Association gave me an article on BFS 11½ years ago, but my doctor has never used the term.

By the way, I think autoimmune is the right direction. My mom is hyperthyroid and my sister has been a Type I diabetic since the age of 10 which are both autoimmune, so my bets are there!!

We'll get there guys! Whether we work together to figure something out or someone jumps in and decides to take up our cause, we'll get there!
My GP said to me last week that eventually we will know what this is and he is sure of it! I think that all of these sydromes are related, bfs, bcfs, fibromyalgia, cfs, restless leg syndrome, etc. Now all we have to do is find the common thread - I'm up for a good challenge, anybody else? Read my post on Amino Acids and Metabolic markers, I'll take anything my doctor wants to throw my way for the cause because he's good at finding the needle in the haystack!

StacyDance
 

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