Of doctors and dilettantes

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Of doctors and dilettantes

Postby Tobes on November 16th, 2012, 12:38 pm

Hello my fellow BFS'ers,

I haven't been on the forum for a while and as some might have noticed I have discontinued posting on my positive thinking success stories thread.

And the reason for my leave from the forum was somewhat involuntary - to put it nicely.

I am going to tell you a story which really is not a pretty one and which I would not wish to happen to anybody.
Unfortunately, however, it happened to me.
For all the anxiety sufferers out there let me point out right at the beginning that the story will close with a happy ending...sort of.

The plain and ugly punch line of my little story is: I had ALS.

This is the plain truth and I am not making anything of what follows up or try to exaggerate.

This little sentence has 3 rather important terms with quite far reaching implications.

"I", as in "my life", "my choice", "my fate", "my future", "me", "myself".
"had", as in "have been", "was, but isn't anymore", "the past".
"ALS", as in "death sentence", "last will", "final goodbye".

But let me start at the beginning.

I have BFS. At least that's what I have strongly believed for the last 4 months.
Since May I have experienced numerous symptoms right from the top of the long list. Also, I had a clean EMG in June.
After the first unsettling weeks I seriously did not consider ALS to be a realistic option. Instead, I was very anxious about BFS and the course it might take.
I envisioned myself having progressively worse symptoms including terrible cramps, debilitating pain and endless monster twitching 24/7.

That's why I have started my success stories thread to confront myself with less severe alternatives to my catastrophisizing expectations.
And I thought I was handling things rather well...given my little anxiety proneness.

Until my GP recommended getting a second neuro opinion on my ever progressing twitching.
So, I figured I would happily do that, get my second "all clear", and move on dealing with BFS.
About 3 weeks ago, I went to this neurologist and told him my story.
The twitching, the weakness, the fatique, the buzzing, humming and vibrating and the progressing muscle pain I have endured for about 4 weeks now.

He did all the clinical exams and gave me a full-fledged neuro and electrophysiological workup. The blood, the electricity, the needles.
Most of you know what I am talking about. It wasn't pretty or pleasant, at all.

He wouldn't tell me anything about what he might have seen or have not seen. Instead, he told me he would send me to hospital for a thorough workup and to clarify what might be going on in my body and muscles. He said he would like to send me to muscle specialists at a university hospital but that it might take months to get an appointment. Instead, "for the sake of my mental health", he sent me to a neurological clinic nearby, who should be able to do the necessary diagnostics.

That was a little ominous, I thought, but then again, I figured the guy was just being thorough and conscientious and that the lumbal puncture was the actual reason to go to hospital as they don't do that in a practice.
He said he would take care of registering me there and that I would be called up by them and then could find a good date around my work obligations.

Alright, even though that raised my eyebrow, I wasn't really concerned. I figured I knew everything about BFS and ALS, and symptoms and probabilities and prevalences.

Then, around Friday noon they left me a message on my answering machine that they set up everything with the clinic and that I should check in Monday morning at 8 am.

"What?"...
"I have seminars to teach, a job to take care of! I thought we would get this over with on a Thursday or Friday...??!!"
"And why the hell does this have to happen so fast???!!!!!!"

I was angry and unsettled at the same time and called up the clinic to change the date and, of course, the relevant people were already gone for the weekend and I was told to call again first thing in the morning on Monday.

So, I spent the weekend in relative pain - which had progressed for about 2 weeks and which left me almost immobilized at that point - and tried not to worry too much.

On monday morning, I called them up, explained my problem and re-scheduled my visit. However, as there was a holiday on Thursday, they recommended to check in the next week to be able to do the full workup without interruption.

Right afterwards, I went to work and gave two seminars. On that day, I was in so much pain that I could hardly walk form the parking lot to my office and during the seminars I had to sit on a table as I was unable to stand up longer than a few minutes.

After this ordeal, I talked to my boss and he told me to just forget about my courses and to get on sick leave to get this neuro diagnostic in the clinic asap.

So, I called them again and re-scheduled for the next day and I figured that the certain thumbs-up would help me deal with the most problematic BFS-symptom, yet.

On Tuesday morning I checked in with my girl-friend as emotional support.

After several hours, a young doctor came in and worked through the entire neurological clinical exam catalogue. Afterwards, he just mentioned that "clinically, you're completely inconspicuous".
Yeah, I knew that already and hadn't expected anything different.

After some more hours of waiting he came back with his boss to repeat and confirm his exams.

Now, this boss of his is actually the boss of the entire clinic and he carries a "professor" title in his name. Besides, he knows me as I have been working in that clinic for the last 12 years, doing functional research with their MR scanner.

He would just shortly address me saying: "Oh, we know each other, right? Would you have ever figured to be here as a patient?".

No, I wouldn't, idiot.

Then he repeated the clinical exams, also found nothing notable and started right away giving me a muscle biopsy speech.
He said straight away that I would likely have to expect the procedure the next week and that they would take out muscle and nerve tissue and that some spot on my footsole would stay insensitive as a consequence of that. But before, they would redo the EMG.

That's all he said. Nothing about why this would be necessary, or why I was even there or what they suspected or what the neurologist had found on his exam.

So, I said: "Well, that sounds rather drastic. Why do you need to repeat the EMG, I just had one and I don't know anything of those results?".

Then he said:"Dr. Doe found dennervation signs in the EMG. Goodbye." Then they left the room without further comment or explanation.

I was thunderstruck.

"WTF, why, how? This can't be, just CANNOT be!!!!!"
"My god, my ultimate fear is about to come true!!!!"

Within half an hour I completely broke down and panicked. It was bad. I cannot put in words what was going on inside me. Sheer and pure fear of death.
I started calling up family and friends and cried and sobbed and was already convinced that this was it for me.

My brother and my sister-in-law came by and my girl-friend and I called up Chrissi. Yes, "our" Chrissi, whom I had talked to and met before and who had been just a great, great source of information and support and reassurance.

They all tried to convince me that nothing had been settled, yet. Chrissie said right away that she mistrusted this EMG and that I needed to calm down and wait for the next results.

This, and a nice pill of lorazepam I had them hand over to me, kind of did the job and had me sleep for at least a few hours.

Nobody had talked to me about any suspicion or diagnosis or anything. But the nurse was very willing to give me the benzo, saying "that it must be very troubling to face such a diagnosis".
What fu**ing diagnosis????!!!!

Of course, I knew what he meant.

Then, the next day arrived and I waited. I waited the entire morning for anything to happen. For a doctor visitation, or a call-up for the EMG or any other exam or just somebody talking to me and telling me what was about to happen and when.
Just, it didn't happen. I sat there in my nice single bedroom with nice cable TV, just like a lab rat in its comfy box.
At noon, I asked the nurses whether I could go to eat or what I should do.
They said, "no, stay in your room, the doctor's will stop by".
10 minutes later they said "You can go for lunch now, the doctor's won't come. The boss will talk to you in the afternoon."

At that point, I was hardly able to walk to the dining room, the muscle pain in my thighs was really, really bad. Even when sitting, I was in serious pain.

After lunch, I waited again. At three, the nurses' boss stopped by to introduce herself and to ask whether all was fine with me.

"No, (fu**!) nothing is fine! I am sitting around, nothing is happening, nobody is talking to me!!!!"

That kind of surprised her and she went straight to check on my examination schedule. 10 minutes later she came back handed over a note with a room number and told me to get to the EMG right away.

Finally, I thought, things are progressing and within another hour or so everything will be fine and I will be cleared to lead a happy and fulfilled BFS'ers life.

What happened in the next 40 minutes was one of the most surreal things I experienced in my life. There are a few others still to come in this little story, but this was up to this point the most extreme one in this respect.

The elctrophysiologist was a nice female doctor from Eastern Europe, with quite e thick accent. That is no problem whatsoever, as eastern European doctors are quite common in german hospitals these days, as due to the bad pay and working conditions many german doctors flee to Sweden or Switzerland.

So, I lay on the bench and she took out the needles. Many of you have endured an EMG examination and you all know what this is all about.
It is not pretty. It is not pleasant. Sometimes, it is really painful.

So, she went to work, sticking the first needle in my calf.

After quite some polking and re-positioning and muscle contracting she commented in quite a small-talk conversational fashion:

"Ah, yes, there we have found one. Yes, this is pathological."

("WHAT THE FU**??????!!!!")

My intestines were cramping, I felt sick to the stomach, I was cold and sweaty.

("*beep*, *beep*, *beep*, no, please, NO!!!! THis is it, I am doomed!!)

Then she got to work at my shin.
After quite some more polking she said: "Oh, that's okay. No spontaneuous activity."

I felt a very slight breath hope.

Then the thigh. "Oh, yes, yes there is another one, Yes, also pathological." (Still in very nice, conversational tone)

The faint hope left me again in an instant.

Then the triceps. "Ah, ok again. Nothing suspicious."

Then the biceps. "Aha, there we have one in the upper body. Yes, this is also pathological."

Then in the back. "Okay, also pathological."

I was catatonic by that point. Another doctor had entered the room discussion how to further process with her.

Rigid of fear I asked:"This is bad, right? Really bad? What does that mean?".

Again very small-talkish and conversational she said:" Oh, with such findings you would normally think ALS."

Figure for yourselves how that made me feel.

Then she did the neck. "That's ok."

Then the face right next to the mouth. "That's also fine."

Rigid from fear I asked: "Do I have ALS???!!!!"

The other doctor, being somewhat more sensitive to my mental situation, tried to de-escalate: "Well, no, that doesn't necessarily mean ALS. Not yet. There's more exams necessary to confirm this."

Okay, gotta run to lead some of my newly acquired second life, but there's more to come. Much more.
Sorry, for scaring you peoaple, but as mentioned at the beginning I can promise you a happy ending...in a BFS sort of way.
So stay tuned and rest assured that BFS is really not a bad thing to have.
As a matter of fact, I am quite happy and proud to be part of this illustrious community.

TBC.
You can't stop the waves, but you can learn to surf!
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Re: Of doctors and dilettantes

Postby Seepi27 on November 16th, 2012, 1:12 pm

I'm afraid I'm still none the wiser as to the outcome of your EMG. Was it inconclusive? What did they mean, 'You don't have ALS...yet'?

Where, exactly, is the happy ending?
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Re: Of doctors and dilettantes

Postby MarioMangler on November 16th, 2012, 1:45 pm

He said that is only part 1. Although I shudder to think where this is going to go prior to the happy ending.

By the way, people always ask me why I recommend that newbie BFS sufferers don't pursue "the whys" or "the whats" very aggressively. This is why. There is always a chance that someone could give you a false positive when they really should be giving you a negative, and good luck getting your anxiety levels back down after that situation. Tobes I can't even imagine how long it is going to take for you to recover from this. Although I will admit I am quite curious to read the rest of the story.

Sorry you had to go through all this.
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: Of doctors and dilettantes

Postby BFSBurger on November 16th, 2012, 1:48 pm

Seepi27 wrote:Was it inconclusive?

It was preliminary. And not conclusive.

What did they mean, 'You don't have ALS...yet'?

Technically that isn't what they said. They said we don't know if its ALS yet. More tests are needed.

An important distinction.

The question currently on the table: Does denervation always mean ALS?

I believe the answer is no. Someone please correct me if I am wrong.

Right now all he knows is that he has Denervation.
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: Of doctors and dilettantes

Postby MarioMangler on November 16th, 2012, 1:50 pm

You can get denervation from stuff like running injuries.
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: Of doctors and dilettantes

Postby BFSBurger on November 16th, 2012, 2:04 pm

Just want to clarify that I believe this post is actually intended to be about a *MISDIAGNOSIS* of ALS ... and not a diagnosis of ALS. Its about a doctor making an assumption and driving Tobes into a total panic for no good reason. Many may read it as a diagnosis of ALS and as per discussions with some veterans here, that is not what it is. [/size]

Such strange phrasing all over the place.

Also the term "dilettantes" is a word I have never heard before, but now that I look it up, I see it refers to amateurish participation in an expertise. This also implies the doctors were in error.
Last edited by BFSBurger on November 16th, 2012, 4:56 pm, edited 3 times in total.
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: Of doctors and dilettantes

Postby MarioMangler on November 16th, 2012, 2:08 pm

This little sentence has 3 rather important terms with quite far reaching implications.

"I", as in "my life", "my choice", "my fate", "my future", "me", "myself".
"had", as in "have been", "was, but isn't anymore", "the past".
"ALS", as in "death sentence", "last will", "final goodbye".



"my fate" "was a death sentence" "but it isn't anymore."

Tobes I like your writing style (I am a fellow writer) but you might have gotten a little fancy. :D
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: Of doctors and dilettantes

Postby BFSBurger on November 16th, 2012, 2:13 pm

Tobes - seriously - KUDOS on the incredible writing ... and i mean that sincerely. Try to remember that when anxiety kicks in, "Skimming" also kicks in .... its a strange effect on an otherwise intelligent person (or so I thought i was) ...

So cater to the retarded people here (me) and please dumb it down a bit.

By the way thanks to reading your post incorrectly, I just went into a panic and worked out for the first time in a month (thinking I have to re-innervate my muscles/nerves so they dont degrade!)

Maybe this was a good thing after all :D
Last edited by BFSBurger on November 16th, 2012, 4:21 pm, edited 1 time in total.
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: Of doctors and dilettantes

Postby mwagner on November 16th, 2012, 3:33 pm

Skimming this post is not a good idea. The key line to what Tobes wrote is:

Sorry, for scaring you peoaple, but as mentioned at the beginning I can promise you a happy ending...in a BFS sort of way


Of course, we don't know the ending, and Tobes, this is quite the cliff-hanger you're putting us through. We need a follow-up soon, please. I think most of us anxiety-ridden BFSers all got a sick feeling in their stomachs reading this (at least I did). I have no clue how you endured what they did to you at the hospital. I think I would have passed out.

So very happy to hear this has a happy ending.

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Re: Of doctors and dilettantes

Postby christo on November 16th, 2012, 4:04 pm

If you don't have BFS, I swear I will kill you before anything else... Dude seriously, how am I gonna sleep with this story ???
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Re: Of doctors and dilettantes

Postby MarioMangler on November 16th, 2012, 4:08 pm

Although if the happy ending involves a massage parlor that will be quite the exciting twist.
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: Of doctors and dilettantes

Postby BFSBurger on November 16th, 2012, 4:17 pm

christo wrote:If you don't have BFS, I swear I will kill you before anything else... Dude seriously, how am I gonna sleep with this story ???

LOL!

However it looks like we may have misunderstood his post.

So lets give him a chance to come back and edit it.
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: Of doctors and dilettantes

Postby garym on November 16th, 2012, 4:53 pm

MarioMangler wrote:Although if the happy ending involves a massage parlor that will be quite the exciting twist.


If it does involve a message parlor, I can assure you that Tobes walks in and walks out of the joint....with a smile on his face (even if his face muscles are twitching)
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Re: Of doctors and dilettantes

Postby Tobes on November 17th, 2012, 1:36 am

Oooph.... :shock:

I just got online to continue my story and saw how much uproar the first part caused.

Wow...I am really sorry for the scare this has caused and I really, really didn't mean to irritate anybody.

And if I was inconsiderate with my story, I want to apologize.

Mario is absolutely right, this post is meant to reassure everybody that everything you read and learn on this forum is absolutely correct!!!!

I had to learn the hard way and wanted to share and also vent.

"Dilettantes" is directly translated from a word we use in German and which the dictionary said would also work in English.

The cliffhanger was also unintentional, I really didn't mean to push the suspense or dramatize. I t just took me a while to write it up an then I had to leave for dinner.

So, before I continue my story let me take the suspense out and put it very clearly right away:

NO, I DON'T HAVE ALS!!!!!

I was misdiagnosed and after 3 weeks of intense fear of death I got officially diagnosed with BFS by some real doctors.
Interestingly, when these doctors explained the details and implications of their diagnosis they literally reiterated "BFS in a nutshell".

Seriously, that was another of the many surreal situations I encountered during the last 3 weeks.

But more about this at the very (happy) end of the story.
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Re: Of doctors and dilettantes

Postby chrissi on November 17th, 2012, 2:59 am

Guys, keep quiet. No he does not have ALS. Or any other MND. He has BFS, confirmed by the best ALS specislists in germany. Definate. This story will very helpful because it shows: if it looks like BFS, it is BFS. And be awars of too many doctors visits. And if you have clead BFS signs but you doctor tells you you might have ALS...go and see a real specialist instead of choosing your tombstone...;)
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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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