Of doctors and dilettantes

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Re: Of doctors and dilettantes

Postby chrissi on November 17th, 2012, 7:36 am

Yes, exactly.
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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: Of doctors and dilettantes

Postby Jonny32 on November 17th, 2012, 7:40 am

Schön, dass Du wieder "unter den Lebenden" bist!
Hoffe ich seh Dich bald mal wieder in Mannheim.
Und jetzt weiß ich, was Du mit Symptomübertragung meintest :)
Greetings from Mannheim!
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Re: Of doctors and dilettantes

Postby Tobes on November 17th, 2012, 8:25 am

Ooooph...I can't keep up with the commotion my little story is causing. :shock:

Whenever my girl-friend drags me away from the computer there are tons of new posts when I return.

Sorry for not finishing again, but she made it very clear that we were to have breakfast NOW, no further discussion allowed.

She grew kind of tough during the last 3 weeks... :D

Anyway, thanks so much to all of you for all the compassion and for caring so much, it is really moving for me and I deeply value and appreciate this!

So, on to the next part of my little BFS-turned-ALS-turned-BFS adventure.

OK, I had completely clean MEPs and apart from the two bad EMGs they found absolutely nothing proving or disproving ALS.

Btw, what they said they had found were not only fasciculations, but fibrillations and positive sharp waves. So, basically all the goodies there are to be found in a bad EMG.

What I have left out so far is that I have good friends in Berlin working at the Charité. For all of you unfamiliar with German health and university system, this is one of the biggest and most highly reputated university hospitals in Germany.

My friend is also a neuroscientist and his girl-friend is a young doctor getting her neurology training there.

So, I was in constant contact with them and sent all the incoming results straight to them. She showed it to her boss at the Charité right away and the responses I got were like: "Ok, the EMG looks bad. But all the other results are rather reassuring. No proof has actually been found and this diagnosis is absolutely not justified at this point. And besides, the clinical picture does not fit, at all."

Her boss simply told her to have me drive up there and then they would have a thorough look at what's going on.

Of course, they didn't give a diagnosis form afar and they didn't say their colleagues were wrong or did not suggest anything different...other than that such a grim diagnosis needs double- and triple-checking and one should be very, very cautious to put even the idea of ALS on the table.

So, my young doctor in the clinic came in and told me the status.
He said: "We have not found any additional evidence for ALS and therefore we won't diagnose you, as of yet. We still think it probably is ALS but all we can do now is to wait and observe the further course and development and have you back in a few months and repeat all the testing."

So, again, they did not explicitly diagnose ALS, but they diagnosed the "suspicion of MND" and communicated quite clearly that they would fully expect to be able to find all the other signs within some more months.

Hoping for some token of hope I asked him one last time:"Do you personally think I have ALS?"

He said:"All the diagnostics strongly point in this direction."

I asked:"What about the negative MEPs, does that not make any difference?"

Then he thought quite a while and finally said:"Personally, I think this makes the diagnosis less likely."

Then he said that they would recommend me to get a checkup at one of the German ALS-sites. That's when I told him that I had already planned and organized the trip to the Charité to get a second opinion.

"Even better", he said and was actually very helpful to get me all the paperwork and test results, etc.

Then he said he could offer me to finally do the lumbal puncture if I wished so and since my Berlin friend told me that the more tests I could bring with me, the better I concurred right away.

Now, let me put this a little bit into perspective.

I have a personal history with this procedure. About four years back, I had a bad anxiety episode which took me almost 2 years to recover from.
Back then, I was in hospital and they did a very thorough physical checkup to make sure that the physiological symptoms I was experiencing back then were indeed psychosomatic and not something else.

After recognizing the nature of my problem and after clearing one exam after the other, I was recovering pretty well and quite fast. Within 3 weeks in hospital I was almost back to normal, no nausea, no sleep trouble, no anxiety. I was cycling and walking and being the smug scientist knowing the problem, taking the appropriate action and having all under control.
Then, as a last thing to do, they gave me the LP.

And I collapsed.

This had never happened to me before and for 2 days I was pretending to have no problem with this experience. Again being smug and *beep*.

Then I had my first full-fledged panic attack and from there on things went southwards.

I took me 2 years and a lot of pain and work and medication to come back to something somehow resembling my former "normal", "real" self.

So, the LP is - was, actually - my Nemesis. Something I dreaded, something I knew could hurt me bigtime and throw me in the deepest pits of anxiety.

And then there is this very young doctor, who was quite nice but who clearly was lacking the ultimate neurological competence, asking me if I wanted him to stick a needle in my lower spine.

Without further thought I said:" Hell, yeah. Let's get rocking right away."

Really don't know, where this came from. One of the big mysteries of my soul, I guess.

So, they fetched the needles and rubber gloves and stuff and I told him my little LP biography and asked him to always address me and tell me what he was doing and besides I had him give me a lorazepam, which he gladly did.

I swallowed it down and within 7 minutes he was done.

I don't know the rise time of lorazepam, but I strongly suspect it was completely unnecessary as all was set and done very likely way before the benzo kicked in.

Again, young as he was, the guy knew his handiwork. He definitely had a knack with needles.

It was as smooth and unproblematic a ride as you could presumably hope for, thinking about long needles and your own spinal cord.

Kind of makes me think about how the last 4 years of my life might have looked like if the guy would have been around back then...

Anyhow, that's of course a dumb thing to think about and besides it's kind of OT.

So, they released me and I was to kill about 5 days with a half-baked ALS diagnosis.

Those were good and bad days.

Good, because sometimes I felt like I had been gifted with a few days of hope and happiness.

Bad, because the hope would leave me regularly, daily.

I cried a lot, I am not ashamed to admit.

I was still in a lot of pain, I could hardly walk, it was that bad.

I had two conversations with the priest.

Now, I grew up in a religious catholic family and catholicism had been a big part of my childhood and adolescence life.
However, ever since I went to University, I more and more got away from religiosity.

I am not a religious person, at all. But I felt the deep urge to talk to him and to cling on to any source of hope.

I even confessed and even though it felt really weird after so many years, it still was uplifting and freeing.

To make it clear, I fully expected that I would get a confirmation of the diagnosis up in Berlin.
My sister even got very angry with me, yelling at me that I had the fu**ing obligation to keep on fighting and to not readily accept such a death sentence which
contained so many question marks and things that just didn't fit or make any sense.

So, on Wednesday, my sister and girl-friend packed me in the car and we drove up to Berlin, about 700 km and and 8-9 hours drive.

Holy cow, I couldn't even take a turn driving, the pain in my thighs was so bad that I could not push the pedals.
I was seriously disabled, something that didn't exactly lift my spirits, either.

Anyhow, after a nice ride we finally got there, checked into the hotel and had a nice dinner with my friends.

When I kind of half-jokingly mentioned that the very good pasta we had was a somewhat worthy last meal, my buddy almost gave me a good smack and told me to shut-the-fu** up and wait for the real pros to do their job.

So, that's what I did and we checked in to the Charité the next morning.

My friend had told me to not expect too much, as it of course is a very huge hospital, a "medical factory", as he put it.

But they were really nice and attentive. The fact that one of their young doctors was a friend of mine might have helped, but the guy in my room confirmed that he was also treated very well.

So, then I got the fourth full neurological clinical exam in 3 weeks. Strength, balance, reflexes, everything. The pretty young doctor (not my friend, btw, she refused to do it personally, which I thought was very reasonable) listened very carefully to all I had to say. About the spreading of the twitching, the insect or maybe even tick bite right around the time of onset, all the tests that had been done, my bad muscle pain and particularly the intense calf cramp I had right about one week prior to the onset of the twitching. I remember that one pretty well, as it was a very solitary experience. I hardly ever had any cramps in my life, even when cycling like a pro several years back. And I haven't had one ever since, and that particular one came literally out of the blue and it took weeks to shake it off.

So, she said they would run the important tests again and then would see how to further proceed.

Later, the young docs came in with their boss, also giving another full clinical exam, having a really sharp look at me. Checking for dents, atrophy and body asymmetries.

(Btw, that was the first, but not the last time I felt like being right in the middle of a scene straight out of Scrubs... :) On my question, my doctor friend said that nobody would carry the stethoscope around the neck, because nobody wanted to be identified as a Scrubs-viewer...which of course, all of them are... :D )

The boss, which right from the beginning gave the impression of being the first really tough-ass competent neurologist I had met during all of this ordeal, told me to calm down and to wait for the testing which they would repeat and that results so far would not justify any premature diagnosis and that things were actually not looking that bad.

Well then, so be it, I thought, do whatever you have to do, bring on the needles and the electricity and the magnetic coils. At this point, I really didn't care the slightest bit, anymore.

So, my friend scheduled the full electrophysiological workup for me. All I had seen and experienced the 2 weeks before again, and more of it.

And she made sure, that I would be examined by the boss of the department, herselves. A highly competent doctor doing electrophysiological testing for 20 years, being in charge of the whole thing for the entire Charité, which has 4 campusses, btw.

So, next morning I was called up to have it done.

To say I was nervous would be the understatement of the year...thinking about it, of my life, I would rather say.

Even though I was still convinced that they would seal the deal for good, somehow with all the positive thinking around me and the Charité people being so reserved towards the diagnosis, hope had somehow crept back into me. Faint and tender, but I had allowed myself the thought of "What if...", of "maybe they have all been wrong, all along...", of "maybe the forum isn't just an unreliable collection of rumblings of anxiety freaks...".

Sorry for the frank words, but as I consider this description to be fully applicable to myself, I kind of take my liberty with using them.

So, she called me in and I thought "This is it. Do or die. She's going to tell me in a short while whether I got into the fangs of incompetent neurologist wannabes or whether I would finally have to put my thoughts regarding my last will to paper."

So, I followed her into the elctro-needle-torture dungeon of terror and death.

Seriously, I had seen a lot at this point, but what she and her colleague did to me this morning in this torture chamber was a big, huge helping of more of the same and some very large extra portion of whipped cream right on top of it.

She was a very tough doctor, with quite a No-BS-All-Business-attitude.

She would not take a bad signal for an answer.

But first, she had a good long look at me and did again some clinical tests.

Then she said right away:"Ok, clinically you don't look at all like ALS. For such a diagnosis, all pieces have to fit together, most importantly the clinical symptom presentation and this is clearly far out of the way of ALS. From what you tell, everything strongly points towards Crampus-Myalgie-Faszikulations-Syndrom and almost nothing towards ALS. I don't believe in the slightest that we will confirm this suspicion. But now we do the electrophysiology and then we will know for sure."

I thought:"........?"

And then I thought:"......?"

And then I thought:"Wait a minute...cramp-myalgia-fasciculation-syndrome...?!!!" (I had never heard or read that term before)

"WTF...that sounds an awful lot like...???!!!!"

And then I thought:"Yeah, bring it on, do whatever you have to do, use as many needles you see fit and don't hold back on the electricity."

Seriously, in an instant she had inspired hope in me like I hadn't experienced in weeks.

Then, they started off with the TMS. I don't know, but I would swear they used double pulse strength than back in the clinic. Every single time I was knocked unconsious for an instant and I wondered every single time: "Now, should I first throw up and then pass out, or should I do it just the other way round?".

They gave me about 20 of those pulses, until she had really good signals from all extremities.

Then she said:"Well, the first motoneuron is completely inconspicuous. No hint of any pathological process whatsoever."

Of course, I knew that already, but it sure was good to hear. And frankly, I had kind of feared that this might have been the only test they might have been wrong with at the clinic. But no, all good so far.

Then she said let's move on to the EMG.

I won't go into detail here, but let me just point out that of the 3 EMGs I have experienced during the last 3 weeks, this was by far the most memorable.

Like I said, No-BS-All-Business-Attitude and bad signals were not an option.

After they had worked through the calf she said:"Ok, apart from fasciculations so far no hint whatsoever at any pathological process pointing towards ALS."

I said, quite intelligently, I have to add: ".....aaaaahhh....hmmmm????????"

And 2 minutes later I thought:"WTF...they have found this very muscle to be pathological in two independent EMGs??????!!!!! Can this be?????!!!"

Then she went to work at the thigh. There, they found something and clarified this quite thoroughly. Afterwards, I counted 7 (!) puncture sites on my thigh. But as most of you will know, they don't just stick it in, measure, and move on but rather polk around quite a bit. They worked about 25 minutes on my thigh muscle.

Then she said:"Yes, here we found signs of neurogenic alterations, but again, absolutely nothing pointing towards ALS. In all likelihood you had some trouble with your back at some point in your life, no big deal."

I began to feel slightly elated: ("Really...??" Are these people serious?? What is happening here?? Is this all just a bad dream or what the hell is going on??!!")

Then they got at my shoulder, then my back and again, found absolutely nothing. Zip. Zilch. All good.

Then she said:"Ok, we have found no indication whatsoever supporting any suspicion of ALS."

As far as can remember, I might have been grinning stupidly like an imbecile and there might have been some drool on my T-shirt.

The she said:"It is completely unnecessary as you have no clinical sign of any problem there, and I am 100 percent sure that we won't find anything, but since you came all the long way we'll do it right and complete and also do the face. You have the choice between tongue and chewing muscle."

Get this right people. There is this person who is quite an intimidating appearance altogether, who has just done the most unspeakable things to me using needles, electricity, magnetic pulses, you name it, and she is asking me whether I would prefer to have needles poked into my tongue or rather my chewing muscle. :shock:

Yes, ouch.

So I said:"Well, the chewing muscle sounds a bit mor harmless."

"Yes, that's what most people erroneously think", she said and took out the needle.

In the end, it actually wasn't that bad. And besides, I was under so much endorphine at that point that I would have gladly consented to start the whole procedure off from scratch, again.

So, she send me out saying:"In all likelihood you have cramp-malygia-fasciculation-syndrome and absolutely nothing supports the ALS assumption."

Ok, got to take a break.

But I have a bit more to tell, for example how they figured that two false EMGs might have come about.

Or the conversation I had with the doctor before I got released. That will be particluarly interesting for all you fellow BFS-forum-members and I can promise you quite a few aha moments.

So stay tuned, all is well and BFS is really a fun thing to have!!!

(I really mean this, seriously, you cannot imagine how drastically my whole perspective has changed on all of this in roundabout 3 weeks or so...)
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Re: Of doctors and dilettantes

Postby jerry2 on November 17th, 2012, 8:46 am

Oh man, your storry reads like a thriller :-& And for you it was a thriller of all thrillers. Getting a death sentance and then getting to live...

What is the MUP testing, I have only heard of EMG, is MUP Motor Unit Potentials? I thought they test those with EMG. I hardly wait the explanation of your fibrillations and wrong motor waves...
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Re: Of doctors and dilettantes

Postby BFSBurger on November 17th, 2012, 8:52 am

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.

LOL !!!!!!!!!!! Sonofa b*tch! LOL .....

I actually laughed out loud when i read this. :lol:

Please dont leave for dinner after saying the end result is "You had ALS" LOL !!
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Re: Of doctors and dilettantes

Postby TwitchyDoc on November 17th, 2012, 10:41 am

I feel so relieved for you! Cannot wait to hear how they justified the false EMGs before and what they said about our community. Again, kudos, man.
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Re: Of doctors and dilettantes

Postby chrissi on November 17th, 2012, 10:50 am

MEP testing is TMS testing. It is a special test for revealing damage of the upper Motoneuron that is not shown clinically yet. They use it here if they have signs of LMN damage on an EMG and want to see what the UMN is doing, or if you are- like I was- patient in a neuroligical clinic which is locally specialised in MND. It is of no interest if you habe a clean EMG, and.... Be happy if you don't have to do it, because you feel like on the electric chair when they shock your brain
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Re: Of doctors and dilettantes

Postby Tobes on November 17th, 2012, 11:29 am

Alright, next part.

I had some food and prepared me a nice yummy cappuccino.

Yes, "cappuccino", as in "coffee", as in "caffeine", as in "stimulant", as in "more twitching". :D

Somebody asked me about my symptoms, whether they were "scared off", or something.

Actually, no.

I twitch like crazy. Everywhere.

My legs hurt. A lot.
But not nearly as much as during the last weeks. Ever so slowly during my stay at Berlin, my muscles seemed to clear off.
I can walk again. I can drive my car. I even went fishing yesterday.
I had trouble walking back because my legs tire very quickly and then the pain increases a lot.
But it also decreases again after giving my legs some rest.

You know what? I couldn't care less.
The other day I had quite an annoying twitch in my thigh. I observed it for quite a while and thought it was actually rather neat. I even felt kind of some fondness for this twitch, and for all the others, I have to add.
The pain bothers me, but I don't think twice about it. I can do what I want to do, even though a marathon is not on the list, anymore.

Don't get me wrong, I want all this to go away. But my life does no longer seem to depend on it.

At this very moment, I have to say I am fully cured of BFS anxiety. Whatever it still has in store for me, I think "bring it on!".

I don't know if I tell the same thing if you ask me in 4 weeks, or half a year.

But this is another thing I don't care much about at this very moment.
I drink coffee, I drink beer, I even have some chocolate, if my girl-friend grabs into her deep candy drawer.

Right now, I feel ok. That's all I have to say about that.

Alright, I got out of the EMG dungeon, basically having been cleared of all ALS threats.

I couldn't exactly feel happiness, or relief, I was just sooooo exhausted. Mentally and emotionally and also physically after 1,5 hours of the full electrophysiology shebang.

I told the news to my girl-friend and my sister and my friend and you can easily guess on their reactions.

But I was just numb.
All of a sudden, I had to carry on with my life, again.
I had to face all my troubles and everyday problems, again.
Annoying things that had become complete non-issues all of a sudden loomed again.

And I kind of couldn't really realize it then. It was surreal. Unreal. Out of this world, incomprehensible.

In the afternoon, the doc came in and gave me a quick update on their view on things.

He took his time with me and explained everything thoroughly. He said that they were very sure that I did not have ALS.

He told me that they were very suspicious about this diagnosis right from the start as clinically just nothing, absolutely nothing even remotely fit into the picture.
And he told me that they believed that I would have cramp-myalgia-fasciculation-syndrome.

He told me about the neurogenic alterations and that they would like to give this a thorough workup to possibly clarify some spinal cord event and that they would like me to stick around for Monday and Tuesday. So he told me to get off the hospital for the weekend and enjoy Berlin.

And that's what we did. I still had problems walking, but I COULD walk again. Slowly, and not that far, but quite enough for some sight seeing, or shopping, or partying, or whatever.

So we got out of the hospital and my sister and girl-friend had kind of fallen in love with this cute alternative furniture/home decoration shop and I told them to just park me in a bar nearby and to have their fun and to not worry about me anymore.

So I sat there, all alone, and I felt how ever so slowly a grin crept onto my face.

And then I got bold, and I ordered a cappuccino. The first coffee I have had in months.

Half way through the very nice coffee, I got even bolder and I ordered a beer. Also a firsttimer in months.

By the time I started working through the second beer, I couldn't keep the corners of my mouth down and I guess the other people in the bar kind of figured that I was some sort of whacko. I couldn't have cared less and then again, maybe they were not that far off with this assumption.

So I grabbed my cell phone and I began to make calls. I called up everyone and everybody saying that I didn't have to die soon and painfully and I told everybody how happy I was to have cramp-myalgia-fasciculation-syndrome.
The twitching...? Pah, funny, really...
The pain...? Come on you sissies, everybody has a little pain once in a while, besides it will come and go, wax and wane, just gotta sit it out...

When my girls finally had finished plundering the store I was almost through with my third beer and threw a round of champagne for the three of us.
As I hadn't had a drop of alcohol in months, you can imagine how well my body took that assault.
It was fun, really.

Then we had a nice weekend in Berlin, which is quite some town and which is well worth a visit.
On Sunday the girls drove back as they had some own lives to take care of and as I seemed to be able to handle a train ride back home all by myself.

I checked back in to the Charité on Sunday evening and I got a few more tests on Monday which were all negative so they decided to release me as there really wasn't anything else to do.

Some results are still amiss. They tested for example for voltage channel antibodies...you know the autoimmune peripheral nerve hyperexcitability thing. You can read all about that in the archives. But I am fine with whatever that might bring. Befor I left, I had the chance to talk to the doc and bring forth my questions.

Now, this is the point where my little story changes its literary format and I move over to some question-and-answer form.

I have read such posts often here in the forum and ever since envisioned doing it the same way should I ever get into some appropriate situation like that.

So, I tbelieve this to be the most interesting and enlightening part of my entire experience, here it comes.

Doc: "We believe you have Cramp-Myalgia-Fasciculation-Syndrome, which we don't know very much about, yet, but which we are pretty sure is benign in nature.

Tobes: "What course does this take or can you tell me anything about the my prognosis?"

Doc: "Unfortunately, no. It is pretty different for anybody. You might expect the twitching or the muscle pain you are experiencing or cramps in the future and of course the fatique and exercise intolerance. However, this is not degenerative and from all we can say today there is a very good chance that symptoms slowly, or even quickly, will lessen or maybe completely disappear. This is not uncommon."

Tobes: "Is there any treatment?"

Doc: "Unfortunately, as of yet, no. However, some people report good results with modern antiepileptic medication which is really far more tolerable with much less side-effects than older medications..."

Tobes:"...you mean Gabapentin?"

Doc: "Well, I can't tell you anything new, it seems. You know everything already!" (smiling)

Tobes: "Are there any behavioral or symptom management recommendations?"

Doc: "No, not really. You just have to be reasonable and pragmatic about it. Try to figure out what is doing you good and what is not and find your own way around symptoms."

Tobes: "What about hot baths, sauna, magnesium, Vitamin D, massage, and so forth?"

Doc: "What I said before applies to all of this. I can't tell you it will do any good for you, however, if you try it out and find it to be helpful, go with it. We all have Vitamin D deficit, so this probably also can't hurt. Also be reasonable about your nutrition. Caffeine, sugar and alcohol are in all likelihood not exactly helpful. Try it out and listen to your body. It will tell you what it needs."

Tobes: "What about sports and exercising? I have serious trouble even walking."

Doc: "Don't isolate yourselves from regular exercise. Do something mild without straining your body too much. Yoga or swimming would be good, also walking or some gymnastics for your back. You probably shouldn't be pumping iron for hours in the gym."

Tobes: "Do you think this has a psychosomatic component?"

Doc: "Every sickness and disease has a psychosomatic component. If you're stressed and unrested and don't sleep well, a flu also doesn't heal as well as when you're totally relaxed."

Tobes: "Do you then think that psychotherapy and anxiety management can be keys to recovery?"

Doc: "Even though we believe this condition to have physiological causes, I would definitely say yes. Symptom management and life acceptance are important keys to anxiety reduction and overall relaxation which almost certainly will help with the manifestations of this syndrome."

Tobes: "Is this some kind of peripheral nerve hyperexcitability?"

Doc: "Absolutely, yes. This is an entire spectrum of related disorders with many different manifestations along the scale. Neuromyotonia being at one extreme end of the spectrum. Which, by the way, is also benign in nature."

Tobes: "Do you think the onset is somehow related to the insect/tick bite I had?"

Doc: "I cannot say that with certainty, but I would rather suspect no. We really don't know what triggers this but at least with some people some viral event seems to precede symptom onset."

Tobes: "Do you think this is somehow autoimmune related?"

Doc: "For some people, yes. However, we actually don't know what's going on and we do not believe it to be a unitary disorder. Probably, there are many different causes resulting in very comparable - but benign - symptoms, just like you are experiencing yourselves. We actually sent out your blood to have it tested for antibodies to see if you are one of the few with autoimmune origin. However, I actually believe the tests to come back negative, that's what we see in the large bulk of people."

Tobes: "Do you have any idea how the two false EMG findings came about?"

Doc: "Well, what you have to understand is that EMG is not a very objective diagnostic and not easy to perform and interpret. It is very subjective and strongly dependent on the examiner. While it is hard to miss really pathological signs, it is also very easy to mistake some slight muscle contraction of a not completely relaxed muscle with spontaneous activity. So, it has to be carried out really carefully by experienced examiners. While false negatives are rare, false positives are actually not that uncommon."

So, that finishes it. I said thanks so much, you really got me out of a big mess and I left the joint with a smile on my face.

But no, it was not twitching. I have that once in a while, but not in the last weeks.

So, there's more to tell but for the moment I'm done with it.
Hopefully, no loose threads and no ALS-uncertainty left.

I'll add some more info in the days or weeks to come.

Some Chrissi-tribute, for example. Cause she really is the sh**, or the bomb, or awesome, or whatever you Americans call that.

"Von ganzem Herzen Danke", is all I have to say to this at this moment.

For now, I'm good. I twitch and I have pain. But I don't give a f* sh**.

Even though I wouldn't exactly recommend something like this experience as an anxiety therapy, it did rid me completely of all BFS-anxiety I had before.

That's the reason why I will not continue my success stories thread. I'm through with it, it's that simple.

Although I still believe it to be a good idea and would hope that some other BFSers would pick up the torch and carry on collecting these stories. Until 3 weeks ago, those were really helping me keeping my anxiety in check.

At this very moment, I see the world through different eyes. Nothing can be as bad as what I had to face for 2 weeks or so.

BFS really is very relative and completely a matter of perspective.

Oh, and in case you haven't figured for yourselves, already:

If you wonder what "Cramp-Myalgia-Fasciculation-Syndrome" is called in English,

it's called "Benign-Fasciculation-Syndrome".
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Re: Of doctors and dilettantes

Postby Tobes on November 17th, 2012, 11:40 am


some more info on the EMG.

When I asked my doctor friend how they discussed the false EMGs behind closed doors, she told me that her boss plain out refused to even look at them.

Basically saying that he's not interested in other people's EMG-findings as they are from sheer experience so very unreliable.

If they need the info, they'll do it themselves as this is the only way to get a reliable result which they would be willing to take responsibility for.

Again, people, don't get freaked out in an eyeblink, again.

From what I learned now this applies almost exclusively to false positives.

Meaning of course, that if you got a clean EMG you can be very reassured that it's real and reliable.

If you got a bad one, on the other hand, get a second, maybe even a third and forth opinion from the best experts you can get your hands on.
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Re: Of doctors and dilettantes

Postby Yuliasir on November 17th, 2012, 12:55 pm

So Tobes, thanks for sharing this story - it seems to be incredible but I am sure it is not unique - doctors make mistakes, lack deontology practice (e.g., a special courses how to behave with patients in, well sensitive situations) etc. etc.
I think it is worth to be rearranged in a more solid way and put as a sticky post here for newbies and maybe for veterans too as a good reminder.

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Re: Of doctors and dilettantes

Postby jerry2 on November 17th, 2012, 1:23 pm

Thank you for your story. I have only one question: Did your doctors say how common is BFS and your false positive was an exception or it happens a lot of times? From the story it seems your doctors didn't have a case like you before.
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Re: Of doctors and dilettantes

Postby Jujulia on November 17th, 2012, 2:21 pm

Wow, what an amazing story! Thanks for sharing it with us, even though I had a heart attack when I first started to read it yesterday lol.

You seem like a very charming young man and I wish you many many many manyyyyyyyy happy years with your friends and family.
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Re: Of doctors and dilettantes

Postby Tobes on November 17th, 2012, 5:07 pm

Unfortunately, I can't say anything about about prevalence or how common false positives are. I forgot to specifically ask about that.

However, my doctor friend mentioned that the EMG-lady complained that this year alone, this was already the third false ALS-diagnosis which they had to set right.

All of those referred to them by smaller institutions, the two others even with definitive diagnoses, not just suspicions.

So, figure for yourselves.
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Re: Of doctors and dilettantes

Postby Tobes on November 18th, 2012, 1:30 am

Hi everybody,

I got pm'ed, being accused of bad judgement by putting out this inconsiderate "bizarre literary experiment", inflicting a lot of anxiety around the board by "vague" language and hard to grasp nuances between the lines.

Let me tell you all plain and simple: I know anxiety.

In my life, I have been forced to deal with it for quite a while and do not wish this to happen to anybody else.

So, while I don't need to be lectured about it, I do feel a lot of empathy for all people having the same problem.

Therefore, I want to apologize to all of you if my story caused you pain and suffering.

This was clearly not my intention - the exact opposite is the case.

I am not a professional or even amateur writer and I was not planning on some literary format or method to push suspense and dramatize.

Writing this whole thing down took me quite a while - more than an entire day, to be correct. And I just couldn't write it up in one uninterrupted go.

There were no intentional cliffhangers or no intenionally manufactured build-up of tension - to be honest, I wouldn't know how to intentionally do this, anyhow.

I literally wrote it down like I have told the story to friends several times ever since I got out of hospital.
That's just my way of telling stories ever since I was a kid.

So maybe I tend to over-dramatize automatically or I am just a natural drama queen.

In fact, I thought a lot about whether I should write it up or not and whether I could do harm by telling it.
But then I thought this board belongs to all BFS'ers and I kind of felt that by sheer fate I had earned the right to be a part of this community and to report on my personal "Experiences with BFS", as it quite adequately says in the forum title.

As a matter of fact, because of these considerations I mentioned right at the start that this story was going to have a happy end.
And then I said it again at the end of the first part.
And I plainly said that I "HAD" ALS. Pardon my foreign language school English, but does that really sound like I actually have it?
And I said that BFS is not a bad thing to have and that I am proud to be a member of the BFS community. BFS, not ALS.
And I also stated that I had a newly acquired second life. Does that sound like death sentence or rather like resurrection?

So, while I truly believed to have taken adequate measures preventing a panic stampede around the board, I indeed might have failed.

So, by all means, if this story really cannot be entrusted with fellow BFS and anxiety sufferers, get it off the board and throw it in the toxic waste bin.

I say that to Gary and I am serious about it.

I have no wish whatsoever to prove that I am a cool guy or a good writer or that I deal better with BFS or anxiety than others.

I wish all of you only the best and I do not want to contribute to worsening your personal situation.

This story was intended to give support and reassurance.

I wanted to tell you that ALS is highly unlikely, that the odds for having it are astronomically low.

And that even if they tell you otherwise, chances are really good that they are wrong.

And that you should never abandon hope with this, not as a hollow positive thinking parole, but for very good reasons as I had to painfully learn over the last weeks.
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Re: Of doctors and dilettantes

Postby Yuliasir on November 18th, 2012, 2:11 am

Holy god, Tobes, how the story like yours may harm???

I am GAD sufferer since 6 years old... and I would like to say that especially in the light of several cases happened recently (at least one when our fellow member was 'granted' with a bad diagnosis) your story is a huge support for everybody here who is scared, not vice versa.
As a GAD sufferer, I may say I still had detected all notes you made at the beginning of your story. So I was reading it consciously and I also noted the promise of happy end at the end of Part one :)

So I think our fellows accusing you for 'overdramatising' etc. should rather think about how do they filter written text through their own perception.

You actually told an excellent story of how should behave any person facing such heavy diagnosis - struggle, question it and go to the top counsel and not just mildly trust bad news.

As a writer (however not professional, I mean not attending any pro writing courses or writer shcool, but still recognized and published) I may also say that stories have their natural course and one should not be a writer to feel where one should take a pause or a break. Humans knew it since Cave Age, I believe... and you did all necessary precautions to keep us reassured form the very beginning.

I think you shouldn't feel bad about sharing that great story, once again. For me it was very significant and helpful.
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Re: Of doctors and dilettantes




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