Why can't we believe?

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Why can't we believe?

Postby Jlc on August 28th, 2013, 6:09 pm

Why can't we believe our doctors?

A year ago, I would have had no problem believing anything my doctor told me. Fast forward a year and I hate my doctor and she doesn't much care for me either.

I have a neurologist who thinks I'm making all of this up, despite exhibiting many early warning signs and actual symptoms of pd and I have a psychiatrist who is so sure I don't have anything that he has put me on medication that can cause neurological symptoms.

I have over 100 symptoms. Some of them are so strange that I know for a fact that somatization cannot cause them.

Sure, I believe that the twitching is bfs... but the change in the shape of my mouth, the excess sweating, the oily skin, the aches and stiffness, the tremors, the constant elbow pain, the fact that I can't bend my elbows without my arms going numb, the burning eyes, the gurgling in my throat, the breathing problems and so on and so on... I just can't believe this is somatization or bfs. If it is... Omg... It will be a bloody miracle.

So I guess, for me, I can't believe because of the severity or number of my symptoms? Or maybe it's the fact that nothing in my body is working correctly anymore?

Some people might say... well, your doctors aren't concerned so neither should you be. I wish that it were that easy.

Cheers,

James
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Re: Why can't we believe?

Postby mwagner on August 28th, 2013, 7:52 pm

Question for you: have you considered seeing a rheumatologist? Your elbow pain points that way as well as some of the other more systemic type of issues you seem to be having. If a neuro has cleared you, I think it might be time to explore what else might be causing your issues.

But, a lot of what you are experiencing could be related to anxiety (don't hate me for saying that). Like oily skin/profuse sweating could be the results of "bad hormones" increasing due to anxiety... Pain is a very common manifestation of anxiety. A very real symptom, due to your brain not getting enough oxygen...

Mitra
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Re: Why can't we believe?

Postby Jlc on August 28th, 2013, 8:05 pm

Oh I don't hate you for saying anxiety, I really hope this is all anxiety... So much.

I have been checked for ra and had an Ana panel done. What would the rheumatologist be looking for... Fibro?

Thanks Mitra,

James
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Re: Why can't we believe?

Postby MarioMangler on August 28th, 2013, 10:18 pm

I think what happens is that BFS people get addicted to the cycle of fear and reassurance. After a while they are so used to it that they almost crave it, like a drug. And when it is not there they don't really know what to do with themselves. So that is my answer. I think people get so used to the drama and the fear and the craving reassurance that they think that is the only way they can deal with BFS.
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: Why can't we believe?

Postby Yuliasir on August 29th, 2013, 12:26 am

James,
the power of overperception is really great.

For example, panick attacks are known to be very bad experience, and people really think they are dying. But physiological measurements during the seizure show only mild changes in AD and pulse however the person feels like AD jumps up to 200 and pulse is going to break the ribs.

There is not known yet much about somatization and why there is such huge difference between what we feel and what we demonstrate but some recent studies give an idea that it may happen to us due to central brain disregulation in which we start to be overflooded with body process signals which usually go via autonomous roots and are not percepted. In other words, we may start to feel ALL AND ANY process in our body, from breathing act to heart operation, gut peristaltics etc., skin sensations become messed up, sudden swelling of mucosa makes real inconvenience etc etc.

having 100 symptomes, none of which do not fit any particular disorder really means that you do not have them all but that your body perception is blown up. it is hard to believe that nothing PHYSICALLY happens but real processes that make you fell all that mostly happens inside your scull, in the brain, and you need fMRI to see what is wrong in brain zones interaction, excitation/supression etc. fMRi is still used only for experimental neurology becasue it invloves volunteers tobe put into MRI machine for quite long time, some special chemicals to be injected to see activities, and anyway it is not a method of clinical diagnostics yet but only for researching to know more about how our brain works.

Look, should at least 10 of your 100 symptomes match PD, you would be diagnosed. having 100 symptomes means your disorder needs really attention of other specialists, not neurologist. Your psychiatrist suggests to put you on antipsichotic drug becasue he is really concerned of this flood of feelings, and maybe there is a reason for you to try.

You will believe if you stop to feel each and every internal and hidden movement of your body. But neuros can not give that to you. Doctors are not concerned becasue they SEE from the OUTSIDE that you are not in PD for example as much clear as we can see that red is not green. But tell that to the person with daltonism... he would be much surprised!
You need to remove that 'daltonism' by calming down your overperseption abd by learning how to stop vitious thinking circle.
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Re: Why can't we believe?

Postby volfan on August 29th, 2013, 12:26 am

so why I am somewhat hesitant to ask, how is your sense of smell. I have heard that it is impacted early on in pd. Obviously, I don't want to answer you with a "dumb and dirty" response, but sometimes if you can check OK to a fundamental question, it helps. Don't overthink this - if it seems normal as a first response, then that as a symptom (or lack thereof) passes as the first gate. I have heard that at least.
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Re: Why can't we believe?

Postby Jlc on August 29th, 2013, 8:18 am

Thanks for the responses guys. Yuliasir, I am trying very hard to see things from your point of view, a positive point of view. It is very difficult.

I was woken up at 3am because it felt like there was an earthquake. It was actually an internal tremor. I also have a vibration in my pelvic area that never stops.

Whatever is happening to me is greatly affecting my life to the point where I just don't have the energy to do things anymore. I honestly don't know what to do.

Steffen, my sense of smell is fine. One nostril has been plugged since this all began in October, but my sense of smell is fine. My neurologist also did most of the pd clinical tests on me and they were fine as well.

I'm really lost at this point.
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Re: Why can't we believe?

Postby Yuliasir on August 29th, 2013, 9:45 am

ah James,
I was not so positive for many years... and 2 years ago I was a real wreck telling to my husband and daughter that I may end up soon in a paralysis...
I am GAD since 6 years, everybody here knows this is my chorus :) I still have to overcome it, right now, looking at 'not online' message in my daughter's Skype and trying not to feel this means she is not doing well so far away from me (she left for living her own life and studying at another part of the Globe).

But with the years I had learned that anxiety and obsessive disorders are treatable and life becomes really bearable and even very nice even for those who got strike of this lightning from the hell or even t those who, as me myself, had lived in anxiety hell almost for all conscious life.

What had helped me to become positive was speaking therapy and some medications (inlcuding antipsychotics in very low dosage prescribed by phsyhiatrist, and SSRI, and Gabapentine which is OTC antianxiety drug (usually used for treating epilepsy but getting more and more popular among doctors as quite proven antianxiety medication without significant side effects).
So I mean you can not just adopt my 'positive' way of thoughts. There is no resources in you for now, and the only resourse giving option is maybe medication becasue it may interrrup symptomes (but not remove the cause). Speaking therapy is necessary becasue it helps to learn how to deal with vitious ways of thinking (I mean CBT which usually does not go too deep into your Id and Ego and whatever but instead drills you to be a master of your own feelings and better understand yourself). This method removes or reduces cause (if your BFS is mostly stress-related) and also helps to work with symptomes.

I am really full of sympathy to all people here who are in struggle. Becasue I know what it is.

At the same time I believe I am a good example of what anxious person can do with his or her life. same are Chrissi, Johnnythejet, SuzyQ, Matt Bobajojo, dozend and hundreds of people who were wrecked and found themselves cured and healed.

So I wish this for you too.
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Re: Why can't we believe?

Postby Arkansan on August 29th, 2013, 2:18 pm

I think that for us that there is some sort of deeper issue going on here. I believe that for me that my problems are a manifestation of years worth of stress and depression that I basically ignored. Once we get keyed up into this state that it becomes hard for us to listen to our doctors because we are looking for some sort of answer, it is just that I think we are looking in the wrong place.

Also stiffness is common with BFS, and I had never heard of elbow pain as a PD symptom I have this sometimes too, and had never even worried about it before? It seems like one that would be to vague to be a good indicator of anything. Also oily skin? Again seems kinda vague. I think sometime we connect the dots when we shouldn't, we put symptoms together that may not actually have any relation to one another.
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Re: Why can't we believe?

Postby Jlc on August 29th, 2013, 2:30 pm

Hey arkansan,

I agree. When I thought I had the ultimate nasty... I convinced myself I didn't have enough strength in my leg to drive... Worst part was that my mind actually convinced me that my leg didn't work!!!

I just spoke with my neurologist who, once again stated that she doesn't think this is a neurological problem but she will continue to follow me.

What a crazy world,

James
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Re: Why can't we believe?

Postby Arkansan on August 29th, 2013, 3:38 pm

When you listed burning eyes, was that as a PD symptom? Mine are doing that right now and it caused a shot of panic for me, I had never heard of that as a symptom before and now I can't remember if they have been doing that for a while or just today. *Sigh* anxiety sucks.
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Re: Why can't we believe?

Postby SecretAgentMan on August 29th, 2013, 4:14 pm

I used to think about this a lot. Right before I sent the alternative route I struggled with the same problem. My gp and neuro both said I was fine but I had trouble believing them. I figured out later why I had such a hard time trusting or believing them. It was because BFS wasn't an acceptable answer to me. If you think about it BFS is an exclusionary diagnosis. All it really means is that you have a collection of symptoms and they aren't something already documented to be more sinister. Again, this was not acceptable to me. I knew something was not right with me and I wanted to get answers so that I could start doing something about it. It was the alternative medicine docs that worked to get to the root of the problem and gave me real options other than pharmaceutical drugs. I found what I was looking for and found my answer to the question you are asking.
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: Why can't we believe?

Postby Jlc on August 29th, 2013, 5:58 pm

Sam, I believe you are correct. Arkansan, my eyes have been bloodshot, dry and yellow for 5 months. Eye doctor said because of extreme stress, my eyes are only making oil and are no longer making water for tears.

As for it being a symptom, I'm not sure. All I know is that my entire nervous system is affected by whatever this is (hopefully bfs) but my doctors keep saying my mind is doing this to me.

They had better be right. I don't think we can sue doctors in Canada like you can. Lol

I have my psychiatrist appointment tomorrow, I'll let you know the outcome.
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Re: Why can't we believe?

Postby Arkansan on August 29th, 2013, 11:58 pm

Yeah I have had sinus problems for years so my eyes do that some. I hope your appointment goes well I am interested to hear.
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Re: Why can't we believe?

Postby Tiber2011 on August 30th, 2013, 6:47 pm

MarioMangler wrote:I think what happens is that BFS people get addicted to the cycle of fear and reassurance. After a while they are so used to it that they almost crave it, like a drug. And when it is not there they don't really know what to do with themselves. So that is my answer. I think people get so used to the drama and the fear and the craving reassurance that they think that is the only way they can deal with BFS.


Mario, that's what I've become.

I have seen 3 ophthalmologists because I'm fearful of Optic Neuritis. So far, all said I am ok (incl. one last week). Yet, I made an appt. with a neuro-opthamologist because I'm a stuck on a worst-case scenario - that I'm one of those people with rare forms of ON who is hard to diagnose and one of those 5% of people who have MS but come up fine. Or worse, slow-moving ALS.

But every time I've seen a Dr, and they start saying you're fine...I can feel the endorphins rise.
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Re: Why can't we believe?

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