The Fear

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The Fear

Postby Jlc on August 21st, 2013, 11:39 am

Hello all,

I was just thinking about something and thought that I would share my thoughts with the forum. At the beginning of this whole mess, I worried about many different diseases (HIV, Aids, Sjorgen's, RA, ALS, MS... etc.). Multiple doctor's told me that I wasn't suffering from those diseases, but I only accepted their opinion after test results came back that proved their theory.

The above thought brings me to my current fear of Parkinson's. Unfortunately, in Canada, there is no test that can be done to prove that someone isn't suffering from Parkinson's. In the UK, they have the Datscan (not always 100% accurate but accurate enough). This means that I am basically putting my 100% faith in a doctor's opinion without any definitive tests to back up the theory. This, coupled with the fact that I haven't seen the neurologist in over a month and a half and feel that some of my symptoms have progressed, puts me in my current position of distrust and fear. I am also afraid because, from what I understand, misdiagnosis is common for young people suffering from PD. I guess I should keep in mind that it would be very rare at my age (29) and that a rare presentation (twitches and many other symptoms at once) of a relatively rare disease would be unlikely.

I have joined this forum to receive great support and have already benefitted from responses from many individuals and every little bit helps.

With the ALS fear, my clean EMG and my age gave me immediate relief and I haven't looked back since. Same with MS... clean MRI and bingo, the fear is gone. I'm not sure when I will get over this PD fear. I don't see the neurologist again until the end of November and am really afraid that my symptoms will progress between now and then.

I just want my old life back. I want my motorcycle, I want my calm and laid back attitude... I want peace and happy thoughts. This is so hard.

Thank you all for listening and sorry if I sound like a broken record. Sometimes it's just nice to get your thoughts out without someone judging.

James
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Re: The Fear

Postby aztwitchy on August 21st, 2013, 1:20 pm

Jlc wrote:Hello all,

I was just thinking about something and thought that I would share my thoughts with the forum. At the beginning of this whole mess, I worried about many different diseases (HIV, Aids, Sjorgen's, RA, ALS, MS... etc.). Multiple doctor's told me that I wasn't suffering from those diseases, but I only accepted their opinion after test results came back that proved their theory.

The above thought brings me to my current fear of Parkinson's. Unfortunately, in Canada, there is no test that can be done to prove that someone isn't suffering from Parkinson's. In the UK, they have the Datscan (not always 100% accurate but accurate enough). This means that I am basically putting my 100% faith in a doctor's opinion without any definitive tests to back up the theory. This, coupled with the fact that I haven't seen the neurologist in over a month and a half and feel that some of my symptoms have progressed, puts me in my current position of distrust and fear. I am also afraid because, from what I understand, misdiagnosis is common for young people suffering from PD. I guess I should keep in mind that it would be very rare at my age (29) and that a rare presentation (twitches and many other symptoms at once) of a relatively rare disease would be unlikely.

I have joined this forum to receive great support and have already benefitted from responses from many individuals and every little bit helps.

With the ALS fear, my clean EMG and my age gave me immediate relief and I haven't looked back since. Same with MS... clean MRI and bingo, the fear is gone. I'm not sure when I will get over this PD fear. I don't see the neurologist again until the end of November and am really afraid that my symptoms will progress between now and then.

I just want my old life back. I want my motorcycle, I want my calm and laid back attitude... I want peace and happy thoughts. This is so hard.

Thank you all for listening and sorry if I sound like a broken record. Sometimes it's just nice to get your thoughts out without someone judging.

James


James, you gotta move on from your train of thought...you don't have PD. My uncle has PD and has for 20+ years...its painful to watch but it simply doesn't start, act or look like BFS...its a different animal altogether.

stop borrowing troubles you don't own

what has a neurologist told you that you have? what was the diagnosis they gave you?
"Health is a state of complete physical, mental and social well-being, and not merely the absence of disease or infirmity." ~World Health Organization, 1948
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Re: The Fear

Postby SecretAgentMan on August 21st, 2013, 1:38 pm

The recent movie that came out with Will Smith called 'After Earth' had a really good quote in it where Will Smith told his son, "Danger is real, but fear is a choice." I like this distinction because it highlights the fact that danger is present in just about everything you do. Every time you get behind the wheel there is a danger that you could be in an accident. There are statistics you could look up on just about every activity you partake in that might send shivers down your spine if you were to start focusin on every possibility. Fear in some cases may be an instinctual reaction to a possibility being raised to your awareness but holding on to it or letting it go is very much a choice. Sometimes we don't realize the power that we have in holding on to or letting go of our fears or we don't know how to let them go. The honest and simple truth is though that our perception of a situation and how we choose to frame it in our minds is always up to us.

Seriously consider taking action on dealing with your fears. How? There are many methods. There are volumes of books in the self help section of any book store. There are treasure troves of webpages and even youtube videos for dealing with health anxiety and anxiety/fear in general. I learned meditation and swear by it. Self teaching is sometimes difficult so perhaps join a meetup group on meetup.com. There might even be a health anxiety group in your area. Go to the website and do a search. Or find a meditation group. Get together with other people trying to empower themselves to overcome their fears and learn from their mentors. Unless you start taking action to change your ways nothing is going to change. Nobody can get over your fear for you. Reassurance from strangers on this site will only do so much until you have your next issue pop up. It's a viscious cycle and you are the only one who is going to break it.
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: The Fear

Postby Jlc on August 21st, 2013, 1:51 pm

Hi guys,


Thanks for the help. I have been diagnosed with bfs, tendinitis and somatization by neurologists. I have been diagnosed with ibs, tennis elbow, costochondritis, essential tremor, somatic symptom disorder and tmj by other doctors.


Secretagentman you share a very enlightening viewpoint and I have enjoyed reading all of your posts. Thank you for your help.


James
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Re: The Fear

Postby chrissi on August 21st, 2013, 1:56 pm

James, this is simply not how Parkinsons presents. My "group of neurologists" in hospital saw me sitting there, a shaking mess that could not walk from shakyness, who could not lift her arms because of pain and stiffness and who looked like a robot from all the ratcheting while trying to move a part of my body. One of those was runnin the parkinsons ambulance , One was running the ALS ambulance and 5 others were just standing around there as a part of the decoration, looking stupid. Their exact words : whatever this is.... It is DEFINATELY not ALS and it is DEFINATELY not parkinsons. It is pbvious that those diseases do not present lime this. Also the kind of tremor is completely different from the stuff we have. You don"t have it. The whole sum of your symptoms SHOUTS BFS and anxiety. Nothing else.
"Our anxiety does not come from thinking about the future, but from wanting to control it" Kahlil Gibran
Anxiety is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained
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Re: The Fear

Postby Jlc on August 21st, 2013, 2:04 pm

Thank you Chrissi! I need a good beating! Lol
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Re: The Fear

Postby aztwitchy on August 21st, 2013, 3:32 pm

SecretAgentMan wrote: Unless you start taking action to change your ways nothing is going to change. Nobody can get over your fear for you. Reassurance from strangers on this site will only do so much until you have your next issue pop up. It's a viscious cycle and you are the only one who is going to break it.


perfectly stated and full of truth.

i struggle with that...we all do but change is a process.
"Health is a state of complete physical, mental and social well-being, and not merely the absence of disease or infirmity." ~World Health Organization, 1948
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Re: The Fear

Postby chrissi on August 21st, 2013, 3:41 pm

Well glad I could help , I am always good for a good beating LOL. No , seriously, it was not meant to sound harsh, but sometimes people just need that " no!stop it! " when they start their thoughts caroussell because they cannot stop it all by themselves. Damned, there was this funny video on here, I think it was Suzi that posted it....I will see if I find it

And secondly, listen to what many of us preach: stop searching for external reassurance. I usually try to calm down newbies during the first storm of anxiety, but at a certain point I tell them: this is not how it works. Your reassurance must be from within yourself, not from the outside. External reassurance is the heroin for health anxious people : it makes you feel better temporarily, but then you feel even worse than before and need more. Which in the end can lead to that unbelieveably high amount of doctor visits that you and some others here have.
This is very hard work, but it is the only way.
A group of fellow sufferers that tell you that everything is all right is your methadone: better than the heroine of neuro visits, but still addictive and not a long term solution if you want to be completely clean.
"Our anxiety does not come from thinking about the future, but from wanting to control it" Kahlil Gibran
Anxiety is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained
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Re: The Fear

Postby johnnythejet on August 21st, 2013, 4:23 pm

As I said in one of my responses, you need to dig deep and think about what it is you're looking for. What words does a doctor or fellow BFSer need to speak in order for you to move on? I'm 99.9% sure the answer is ....those words don't exist. There is nothing left for you to hear, and this psychological addiction to being told "you're okay" is dangerous. Every day wasted obsessed with this irrational fear equals more loss; Loss of life memories, precious moments, friends, family, and livelihood. Take back control.
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Re: The Fear

Postby Arkansan on August 21st, 2013, 4:56 pm

Fear is certainly the hardest part of the BFS experience. I still struggle with mine after a year, but while we may not always be able to control our symptoms, fear is something we CAN learn to control. Like anything else its a process not an event, but every small step made is still one closer. I also think fear is addictive in a perverse sense, once we get stuck in it I think we end up seeking it unconsciously, fear really is a disease all of its own.
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Re: The Fear

Postby Jlc on August 21st, 2013, 8:23 pm

I know you guys are all right. The only 2 doctors that I have left (psych and neuro) the have both told me they think this is somatization. I don't buy that though for a couple of reasons. I tend to believe in bfs. In my case, I had mono for a month and then the bfs started.


Today, I am went for a walk that was supposed to be 8km but turned out to be 16. This was all because I went to pee in the bush at the exact moment my ride drove by. This is my typical bad luck. Anyways, when I got home, all of the pains that have been waxing and waning for months came on full force. My back is killing me, the bottom of my feet hurt so bad I have to walk on my tip toes and I have stabbing pains in both thighs. I used to be able to walk 16km in my sleep. It's this kind of thing that sets me back and makes me feel like this isn't benign.


I know that if I knew 100% for sure that this was bfs and that's it, I could deal with it much better. I guess no one ever knows for sure though. Somehow you all find a way to live with it and so will I.
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