Still not calm after all tests cleared of disease

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Still not calm after all tests cleared of disease

Postby LKP1231 on October 4th, 2014, 8:20 pm

Ughhhh I tried to stay away and convince myself I'm ok. The neuro and his pa have both assured me the testing has ruled out ***. They explained why. I get it for the most part. Then I worry it was too soon but with all I've been feeling I feel like something would show. I just don't like that they want to say it's from my back. Mild disc issues? Causing all over random tiny twitching? All the time? And b12 on the lower side but still within range. So it's hard to argue with the tests but their explanation of symptoms doesn't fly. I'd rather they said no reason for it they can see. But they are not going to do that. I want to believe the tests and live my life. Why can't I?
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Re: Still not calm after all tests cleared of disease

Postby J4son on October 5th, 2014, 12:09 am

LKP1231 wrote: I want to believe the tests and live my life. Why can't I?



Because if health anxiety and hypochondriasis could be cured with a mere test, it would have been know by now. Every anxious person would have done a test and moved on with his life, which obviously is not the case. Health anxiety is considered in psychology as a difficult condition to treat. Strangely I have noticed something on this board, the less someone do tests, EMGs, doctors etc. and the quicker he seems to be able to recover and move on with his life, and the more tests are done and the more he’s stuck in anxiety and fear of the worst.


On Wikipedia they mention something (with a reference) about a possible link between BFS and chronic stress with stress hormones continuously released in the body. Personally I believe everybody here is experiencing a completely abnormal level of chronic stress either before the onset of the twitching or after when all the focus turns into what is perceived as a life-threatening menace. Can you imagine what must be going on inside the body when day after day, week after week, month after month and often year after year a person is living in a fight or flight state of mind, continuously fearing death, continuously surfing the web for reassurance, continuously doubting the doctor’s diagnosis, continuously reading scary stories written by some unknown dude on some ALS website? When every single day all the focus and all the attention is turned toward muscles twitching, BFS, ALS, MS, Bulbar, Atrophy, stiffness, wasting, self-tests, self-examinations etc.? Go and read what chronic stress can do to the body: heart problems, muscle problems, diabetes, changes in the brain etc.

Do you think a person living like this for certain amount of time will magically be cured in a second because an EMG came negative for MND or because the doc said you’re ok? Of course not, that’s laughable. Health anxiety must be targeted on its own. At least that’s my experience with it.
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Re: Still not calm after all tests cleared of disease

Postby Yuliasir on October 5th, 2014, 12:16 am

you can not becasue our syndrom includes not only timy widespread twitches but also a mood disorder. As I said, I do not know if mood disorder is a primary disease in our condition or not, but it exists. part of it is a physical change in the central brain - increased activity of amygdala, an old part of brain which for now is our alarm center. Saying in an figurative way, you got a military turnover in your brain :) normally army does not patrol the streets etc, but when the turnover comes, armed people appear on the sight and all becomes of camouflage color. Same with your brains (mine too by the way). Amygdala patrols all informational routes and, becasue it is an alarm center, it keeps you not only in anxious state, but causes anxiety at a maximum possible level. It is a self-sustaining system, and becasue it is a SAFETY system, it is very hard to override it and cancel alalrm signals. Especially when your "democratic powers" (lobe cortex able to suppress amygdala by meams of reasoninig) are weakened (like it happens in every military turnover), You are in danger!!! Reason! What reason! DANGER!!!!!!! DANGER!!!! ALARM!!! AlALRM!!!! - that is how it works. And it could not be switched off in a click.

OK, I think analogy is quite clear. So your taks number one is to calm amygdala somehow with all possible means. Again, as with military turnover, it takes a lot of time to regain your democratic lobe cortex rule :) (some says 7 times compared to the time of fears buildup). I see that you are on the right path already telling yourself that doctors, who have a lot of specific practice, knowledge, and no reason to lie to you about your conditions, had cleared you regarding MND. Get yourself sleep minimum 8 hours a day, and in a few weeks your 'reasonable' questioning of explanations and results will fade away (believe me I know what I say) and your military turmover would be over.

Lumbar disc compression surely can not cause widespread twitches. It had caused your leg buzzing and twitching. Widespread twitches are casued most probably by overall hyperexcitation of the central brain (again, it is present in our case and may be quite similar to epileptic or migraine-like activity - be focal - or may be more or less spreaded). That is why we experience so many symptomes. Our nervous system (in their whole integrity) is overcharged, inflammed - in a practical way or in a figurative one, that is why we have GERD, twitching, pseudocardiac symptomes (palpitations), anxiety and all that crap.
All what you should know and remember is that at MND there are specific signs of degenerative processes both in local and central nervous systems. YOU DID NOT SHOW them on several very specific investigations. The fact you do not inderstand or even may misinterpret explanations given to you (which happens) should not cancel the fact that you were several times clearly and repreatedly told by specialists observing your motoric activity in a real time mode that you do not have ALS. That is the key point and clearly you must get it as a reference point.

Get your brain armed forces back th their camps. Let your amygdala do the job - warning you about the cars on the street when you are driving or walking, telling you that in the darkness it is better to use a flashlight, or making you saying OOOPS when you touch someting hot unintentionally. That is what this structure is designed for. And not for ruling each and every your thought as it happens now.

With the time it will happen by itself, with some small aid from your part, if you will relax. No danger. Not this one. Really.

Or this small piece of flesh will rule your life, causing you tortures and pains, and making you unavailable to your family and friends. I had seen this here also. I was (and sometimes still I am) a hostage of this safety system. But I am taking medicine, using phylosophy to help with force majeure ike war etc, and speak with the therapist. Those three are the only other means to help if someone can not fight crazy amygdala on his or her own - pills/herbs, therapy and philosophy.

You would be OK.
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Re: Still not calm after all tests cleared of disease

Postby MarioMangler on October 5th, 2014, 2:22 am

J4son wrote:
LKP1231 wrote: I want to believe the tests and live my life. Why can't I?



Because if health anxiety and hypochondriasis could be cured with a mere test, it would have been know by now. Every anxious person would have done a test and moved on with his life, which obviously is not the case. Health anxiety is considered in psychology as a difficult condition to treat. Strangely I have noticed something on this board, the less someone do tests, EMGs, doctors etc. and the quicker he seems to be able to recover and move on with his life, and the more tests are done and the more he’s stuck in anxiety and fear of the worst.


On Wikipedia they mention something (with a reference) about a possible link between BFS and chronic stress with stress hormones continuously released in the body. Personally I believe everybody here is experiencing a completely abnormal level of chronic stress either before the onset of the twitching or after when all the focus turns into what is perceived as a life-threatening menace. Can you imagine what must be going on inside the body when day after day, week after week, month after month and often year after year a person is living in a fight or flight state of mind, continuously fearing death, continuously surfing the web for reassurance, continuously doubting the doctor’s diagnosis, continuously reading scary stories written by some unknown dude on some ALS website? When every single day all the focus and all the attention is turned toward muscles twitching, BFS, ALS, MS, Bulbar, Atrophy, stiffness, wasting, self-tests, self-examinations etc.? Go and read what chronic stress can do to the body: heart problems, muscle problems, diabetes, changes in the brain etc.

Do you think a person living like this for certain amount of time will magically be cured in a second because an EMG came negative for MND or because the doc said you’re ok? Of course not, that’s laughable. Health anxiety must be targeted on its own. At least that’s my experience with it.





This is a really good post. Everyone should read it over and over again.
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
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Re: Still not calm after all tests cleared of disease

Postby MarioMangler on October 5th, 2014, 2:24 am

Yuliasir's post is also great. Some great wisdom in this thread for those who wish to follow it.
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
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Re: Still not calm after all tests cleared of disease

Postby LKP1231 on October 5th, 2014, 6:42 am

You people are awesome. Thank you.
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Re: Still not calm after all tests cleared of disease

Postby SecretAgentMan on October 5th, 2014, 9:22 am

Great posts indeed. If people truly want to progress in the right direction I also believe the proper first priority should be their ability to cope with anxiety. But how? It is not that we don't have the ability to do so, it is more that we don't know how to change. That is where learning new tools and techniques becomes necessary. If it were as easy as just deciding to do so, we'd be able to overcome our anxiety a lot easier. It is not that easy though. Investigate the tools available that will enable you to accomplish that goal, and change the way you cope with and handle your anxiety. Just as one example of many there is Transcendental Meditation (TM). TM has a great deal of research published on its effectiveness for stress management. I'm also a fan of hypnosis, but whatever tool or technique you decide to pursue, you will need to stick with it. These aren't magic bullets. They are tools to help you to change. In order to change you first need a solid intention. Second you need to follow through with action. Lastly, you need to maintain. There is no one-and-done. I know from experience though that positive transformation is possible. If anyone ever wants to talk about this further I'm always available. Just PM! Here's some info on TM for anyone curious:

Image
Source: http://www.tm.org/blog/research/new-res ... d-anxiety/

Image
Source: http://www.tm.org/reduced-stress-and-anxiety

Image
Source: http://www.tm.org/reduced-stress-and-anxiety
If your mind is your own worst enemy, why not make friends with it and turn it into your greatest ally? Mental discipline is achievable and there is help available. Learn what works for you, practice, and change your life for the better.
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Re: Still not calm after all tests cleared of disease

Postby RGB on October 5th, 2014, 11:40 am

J4son wrote:Strangely I have noticed something on this board, the less someone do tests, EMGs, doctors etc. and the quicker he seems to be able to recover and move on with his life, and the more tests are done and the more he’s stuck in anxiety and fear of the worst.


I think this might also explain the geographical distribution of people here (although understand that access to internet etc is also biased). If you go to your doctor (in a country with 'modern' healthcare) complaining of twitches and instantly get an EMG,MRI etc then your brain concludes that there must be something seriously wrong with you. If you get repeat EMGs then your brain concludes that the earlier EMGs may have missed something (why else have them?).

But if you go to your GP and they say after a basic neuro exam, "It's just twitches, often caused by anxiety" then many people will go away satisfied, never consult Dr Google etc. Having been tested for something rare and unlikely makes it LESS likely that you have it not MORE.

RGB
My history....Jan '13: Widespread Twitches. May 13': Unremarkable Neuro Exam. Jul '13: Clean EMG. Oct '13: BFS Diagnosis Today's Date: Twitching and Healthy!
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Re: Still not calm after all tests cleared of disease

Postby LKP1231 on October 5th, 2014, 3:30 pm

Good point RGB
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Re: Still not calm after all tests cleared of disease

Postby LKP1231 on October 5th, 2014, 4:51 pm

I feel like I need to sit down with my neuro again and let him explain to me again face to face why he has ruled this out. If not for some age related back issues would he still? Apparently my muscle "recruitment" on the emg was very good in all spots tested. This must count for something? I would think it would not be so with disease. I just want this over. My husband says if I can't accept his explanation I should bring my records elsewhere. I soooo don't want to do that. But I need to feel sure.
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Re: Still not calm after all tests cleared of disease

Postby Xina535 on October 5th, 2014, 5:05 pm

LKP1231 wrote:But I need to feel sure.


Key words. Sums up what we all wrote about before you went for the EMG and the circle many of us are stuck in. I compare it to a traffic rotary. You can circle and then choose an exit, each exit leads down different paths. Some of us just keep circling, some have taken an exit but u-turned and ended back at the rotary, and some were able to take the right exit and never go back.

I also love all the above posts, so dead on. My logical brain is all high fives and fireworks with those words but my emotional brain is at the steering wheel, concentrating on the turning.
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Re: Still not calm after all tests cleared of disease

Postby Yuliasir on October 6th, 2014, 1:03 am

do that. According to what you wrote before, they ruled out ALS becasue they did not found any specific signs on EMG and moreover you had excellent recruitment (which means that your musscles respond to stimuli absolutely in a normal way), but it is much better to hear this from the doctor.
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Re: Still not calm after all tests cleared of disease

Postby LKP1231 on October 6th, 2014, 11:17 am

See my new post. Have denervation everywhere and he swears it all corresponds with the MRI of my back and neck.
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Re: Still not calm after all tests cleared of disease

Postby MarioMangler on October 6th, 2014, 11:36 am

Maybe he's right
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
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Re: Still not calm after all tests cleared of disease

Postby RGB on October 6th, 2014, 12:02 pm

MarioMangler wrote:Maybe he's right


Highly educated neurologist knowing what he is talking about?

You can keep those kind of crazy ideas away from this board ;)

RGB


PS As always... not making fun of LKP's genuine distress, just making a point.
My history....Jan '13: Widespread Twitches. May 13': Unremarkable Neuro Exam. Jul '13: Clean EMG. Oct '13: BFS Diagnosis Today's Date: Twitching and Healthy!
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Re: Still not calm after all tests cleared of disease

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