Need to vent bout ****** doctors...

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Need to vent bout ****** doctors...

Postby chrissi on October 24th, 2012, 9:33 am

I just got all my test results from hospital for that study about BFS Twitchy doc mentioned. So I started to translate some of that stuff in english, because maybe noone in that group speaks german. I could not believe what I read there: OK, all my neurological exams were fine so far, they were talking about my anxiety and in a little by-sentence they mentioned that they found a (benign) tumour in my spine and a lot of cysts in my thyroid gland. Both to be followed by further tests. WHAT??? I mean, they write that both of this is not the reason for my twitching but...hey....honestly: If there's stuff growing in my body in places it does not belong, I would have been pleased to BE TOLD!! They just said I have nothing and gave me a pack of Zoloft. :shock: I am very very *beep*. Especially as this means I have to see a doctor (actually two, one thyroid guy and my GP)soon. Which I hate to do. Gosh, I am very angry. This was discovered over a year ago!
"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: Need to vent bout ****** doctors...

Postby Jujulia on October 24th, 2012, 9:57 am

Poor Chrissi. You see, this is why I don't like when people write on this board ''trust your doctors, they know what they're talking about''. Benign or not benign, you're not a child, it's your body and you should have been told that information, especially since you have a bunch of weird symptoms. It's benign? Fine! So they tell you: ''listen, it's benign, it's not the cause of your problems, so don't worry''. Is that too much to ask? Man, that *beep* me off... I don't like doctors either and believe me, unless I have a real major problem, I never ever go to see them. How many people on this earth have been misdiagnosed because of careless incompetent doctors? How many radiologists have made wrong interpretations of X-Rays?

The simple truth is: it's better not to get sick.
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Re: Need to vent bout ****** doctors...

Postby chrissi on October 24th, 2012, 10:12 am

Well, they were absolutely right when they said that I am degfinately OK regarding any nasty neurological disease. But it would just have been nice to tell me what they know. I mean, if someone sees his mechanic for a strange noise from the engine and the mechanic repairs it and doing this, discovers that your breaks need to be fixed, he will tell U? Why not doctors???
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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: Need to vent bout ****** doctors...

Postby Yuliasir on October 24th, 2012, 11:01 am

Understand you, Chrissi!
They really should tell you especially regarding thyroid, I think.
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Re: Need to vent bout ****** doctors...

Postby BFSBurger on October 24th, 2012, 11:11 am

I agree. There is far too much credit given to the infallability of doctors on this board. Because doctors have been known to be total trainwrecks of wrong information more often than not, in all my experiences. My mother is currently dead because of an uninformed doctor. Don't get me started. But I understand the psychological aspect of people here needing to feel that they can trust their doctors. After all, most of us hear from these same doctors that we are "fine". And that is important for us to hear, and believe. So people here tend to latch on to all the positive aspects of doctors. I understand it, and agree with it wholeheartedly, for that single purpose of mental stability with BFS.

But lets never confuse "youre fine" and "its benign" with.... "nothing is causing this". Because its dead wrong. Something is causing this. For each of us. You dont go from perfectly healthy to a twitching mess if nothing is happening. Utter nonsense.

I mean, if someone sees his mechanic for a strange noise from the engine and the mechanic repairs it and doing this, discovers that your breaks need to be fixed, he will tell U? Why not doctors???

I use the car example ALL THE TIME. In fact I just brought my car in this week. When I rolled up there was

1) A team of workers there to receive my car, register it, and pull it in back, complete with protective mats from their dirty shoes.
2) I was sat down with a service advisor who asked me all the issues with my car, and frantically typed them into a computer.
3) At no point did he tell me I was imagining the noise coming from the back of the vehicle.
4) At no point did he tell me I was "focusing too much on it" and therefore it "may not exist".
5) At no point did he act unaware of how my car works.
6) The vehicle is taken in back, and looked at - over night - for 3 days straight, by various highly trained specialists.
7) All aspects of the vehicle are examined and any defects identified and solutions offered.

My car gets more attention and care than my health ever has, from any doctor on this planet.

I know the typical response: "Its a car. Our bodies are far more complex". That doesnt justify the utter lack of attention and detail and thoroughness. If you had that many pepole attending to my condition, for that long, and that intensely, then health care would be satisfactory. Maybe even great. As it stands, you wait 2 weeks for a 4 minute appointment where you get told its all in your head. Screw the medical system.

Chrissi - Have read many testimonials from people who pushed hard to get their spine fully looked at, and found various minor things like yours, only to be told by doctors that the items do not cause the symptoms being experienced by the individual. In the cases where the items were removed properly, i saw many examples where the patient declared (quite loudly) that not only did the primary symptom go away, but *all those things* the doctor said wouldn't change - WENT AWAY too. I mean literally - item number 800,000 where a doctor was wrong. But my point here is this - ignore what doctors tell you about your symptoms not being related. I believe its often right, and often totally wrong. Several very specific examples of this in my reading over the last 3 weeks. So stick with your gut on this, and pursue the possibilities of:

1) Ensuring the tumor is benign via whatever options are available
2) Ensuring removal of the items if at all possible, safely. If not possible, then at the very least, enjoy some peace of mind that you know exactly whats causing this.

I am still thoroughly convinced there is something going on in our spines. My MRI found a bulging disk, disc degenerative disease, calcium deposits , and arthritis in my C5 C6 C7 .... so when i get the opportunity I will be pursuing those items more in depth.
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: Need to vent bout ****** doctors...

Postby chrissi on October 24th, 2012, 12:10 pm

I still feel very comfortable when I say: if you neuro is telling you it is not ALS or MS, believe him. Because those are 2 things easy to diagnose. But there's a big difference between "nothing" and "nothing that will kill or dsable you". BFS is something. And I am very sure that there are various triggers for BFS amongst the twitchers. Those can be anxety, viral infections, elekrolyte imbalances, hyperventilation, maybe some food intolerances, stress, thyroid problems. The tumor they found was a hemangioma, which is truly a benign thing.Hopefully the thyroid cysts as well. Still a bit irritated though., But I also got 6 pages of blood results and EMG results and NCS for the study, which is a good thing
"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: Need to vent bout ****** doctors...

Postby Jujulia on October 24th, 2012, 1:21 pm

Of course Chrissi, it's always easier to tell someone what he doesn't have instead of what he has (which is obviously a good thing for most of us on this board, including me)... :)

However, BfsBurger is right; something triggered our twitching and most of our doctors don't seem to care about what it is. But don't get me wrong: I know they are not all the same; there are a couple of great doctors out there who save lives everyday, thanks God!
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Re: Need to vent bout ****** doctors...

Postby jerry2 on October 24th, 2012, 2:54 pm

Uhhh Chrissi :-(((( You know about my doctors, I won't repeat myself... I don't even know what I have or don't have and I will try to start living day by day, I can not change if I have anything.

I hope they take a good care of your benign tumor now to see if it is pressing your nerve maybe?!
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Re: Need to vent bout ****** doctors...

Postby mwagner on October 24th, 2012, 6:35 pm

Chrissi,

My friend. This really stinks. The fact that they withheld that information from you is just nonsense! We all deserve to know any findings doctors find, because after all, it's our bodies!

Sorry. You should give them a good piece of your mind.

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Re: Need to vent bout ****** doctors...

Postby chrissi on October 25th, 2012, 7:17 am

Saw my GP today. He NEVER got that information and was totally shocked about that. Have an Ultrasound for my thyroid in November and one for that apparently HUGE hemangioma and another CT. It is exactly that place where I suffer from pain for months, and they all told me it was just stress..he also said he sees absolutely no Korrelation between my BFS sx and those things because my thyroid bloodwork is excellent and the local hemangioma cannot cause bodywide problems. Especially not ones that are triggered by infections and can be calmed down my meditation LOL.
"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: Need to vent bout ****** doctors...

Postby plainslady on October 25th, 2012, 7:42 pm

I went through this too Chrissi, with the cyst in my spinal cord. It was seen as far back as 2008 when my pain symptoms started and then again in March of 2011 yet the radiologist failed to mention it other than in passing on the report, noting "an incidental meningeal cyst in the S2 level." My PCP didn't think anything of the report, neither did the first neurologist who even looked at the MRI. It wasn't until I was utterly depressed and had resigned myself to living in constant pain I decided to pop my MRI in my trusty laptop and discovered the cyst. I made an appointment with my chiropractor to get his opinion and he told me the location of the cyst accounted for ALL of my pain symptoms and locations. He helped me locate a neurosurgeon who treated that type of cyst and the rest is history. I had surgery, the tingling in my groin and legs went away, my pain has decreased by 90%, and I have full strength back in my right leg. I'm thankful I trusted my gut instinct and didn't give up, otherwise I would have been relegated to a life of pain killers and depression.

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Re: Need to vent bout ****** doctors...

Postby chrissi on October 26th, 2012, 12:53 am

Yes I know. I mean, although it is not the basic cause for the twitching, constant pain is never nice. I can still deal with mine quite OK, but who knows how it develops? They all told me that this pain was stress-related... :roll:
"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: Need to vent bout ****** doctors...

Postby stephane28 on October 31st, 2012, 7:31 am

Sorry about that Chrissi.
Maybe the doctor didn't tell you about this because it's benign and that there is nothing to do with it? So they didn't want to add you more stress since were already experiencing stress related symptoms.
So, according to your GP, some of your pain is due to this tumour and your twitches to BFS? Does he plan to remove your tumour?
Anyway, good luck and keep us informed
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