Of doctors and dilettantes

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Re: Of doctors and dilettantes

Postby MarioMangler on November 17th, 2012, 3:03 am

Yeah don't let the response to your post make you reconsider writing it. If it is therapeutic and helpful for you to write it down (which I'm sure it is, all personal writing is) then by all means go for it. Forget the response. I am curious to read the rest of your story as well.
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 chrissi on November 17th, 2012, 3:10 am

It is a really thrilling one. As a witness of the whole story, I lost my last preganancy - pounds and fit into my before- baby pants again.
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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 Floydian on November 17th, 2012, 3:18 am

Hey Tobes, that must have been a real horror ride for you, oh man....
I'm so happy for you that it turned out ok in the end. Can't wait to read the next part, you really have a writing talent.
(I bet you can sell this story to Hollywood :wink: )
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Re: Of doctors and dilettantes

Postby Yuliasir on November 17th, 2012, 3:26 am

however i was not a witness as Christi, I still managed to understand that the story would be with a happy end because Tobes said it at least twice in his origian post :))))

I think this story (Tobes, please continue it!) would be a good point of care for our fellows who a) might be misdiagnosed as was Tobes and b) scared of the misdiagnosis stories read on other sites, etc. And I think that we always should consider that possibility reading about MND onsets, diagnosises and outcomes.

I was really surprised last year to know that even in our times of fine testing methods and exminations people with clear carpal syndrome still could be misdiagnosed as ALS onset (just because carpal syndrome involves denervation due to trauma, and leads to atrophy and paresis but without sertain other neurological signs typical for ALS and of course with distinct pains in the arm at early stage). Such a simple thing as pinched nerve in your wrist - and you can be really wrongly diagnosed with a single choice of a tombstone in 3-5 years!!! Moreover, because there is no cure for ALS, nobody cares in those cases for the hand (which in the meantime could still be spared and recovered in case of carpal syndrome).

So Tobes, please share your story :)

And I am really sorry and angry for the doctors because three weeks in the hell might still have a consequences even in the course of your BFS :(((
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Re: Of doctors and dilettantes

Postby Tobes on November 17th, 2012, 3:49 am

Wow...my browser just crashed and I lost about one hour of writing.... :evil:

Man...I really should get used to saving text every once in a while.

Anyhow, since I caused such a scare I want to completely dissolve all lose threads and finish my story.

Okay, after the EMG I was in very, very bad shape mentally, as you all can probably imagine.

As the next day was a holiday they gave me leave and I packed up my stuff. We still had not talked to anybody and my girl-friend had had it by then.
She insisted that some doctor would finally tell us what was going on and what these results meant.

Half an hour later the young doctor came in an we offered him a seat. He refused, leaned against the wall and said that this would not take long. (Excuse me...???!)

He then explained that everything would point towards ALS. However, as the EMG only found spontaneous activity in 2 out of three levels in my body they would need to run some further tests to confirm this suspicion. Particularly the MEPs would be decisive as they test for pathological activity in the first motoneuron.

I asked:"What about the generalized fasciculations all over my body that come and go? And what about the intense - and symmetrical - muscle pain that I had experienced for about 4 weeks? That's all very untypical for ALS, right?"

He said:"Well, such fasciculations are regarded as a hallmark symptom of ALS. And pain is also common."

I asked:" Have you ever seen ALS patients? I'm too young for this, have you ever seen one my age???!!"

He said: "Yes, I have seen some as a student and I have also seen a young one during my internship."

He did not tell me that I had it, but it was very clear that they regarded it to be highly likely.

So, that's how we left the clinic to spend a holiday with my family.
At that point I had abandoned all hope. My friends and family all told me that nothing had been settled, yet and that there were more tests needed.
Some even suggested that they might be all around wrong and incompetent.

But, hey, I'm an anxiety patient. How was I supposed to handle a situation like this?

I could not imagine that 4 neurologists and 2 EMG results were wrong.
I completely discarded everything I had read on this forum, thinking that the internet was a strange place and not a trustworthy source of information.
After all, they were the doctors, some even professors!!!

I checked in again Thursday evening and another pill helped me towards some hours of sweet sleep.

After breakfast in the morning sat in the lobby and was very depressed. That's where the radiologist saw me and said hello.
Now, I have been working with her and her team for the last 12 years and she is a very nice and warm person.
She said: "What are you doing here so early in the morning? And you are dressed rather casually..."

We only get to use the scanner after business hours, so I would normally only show up in the evening.

When I told her that I was there as a patient she was very concerned and took me to her office.
Ther I told her my sad story and how I was being treated at the clinic.

She pickud up the phone right away and within the next half hour I had all the remaining exams scheduled and she gave me the MRI right away.
She did at least twice as many scans as they had ordered, insisting that it would make no sense to not scan the head.
She and her team were very nice, but of course, they couldn't tell me anything different about what was going on with me. She is radiologist, not a neurologist and - sure enough - the MRI was completely clean.

Besides, guess how many ALS patients they had seen in this clinic over the last 20 years?
When I asked, the nurse said "maybe a handful", all of them older people, showing typical signs of clinical weakness and atrophy.

Anyhow, right after the MRI they ran the metabolism blood test which took more than an hour of exercising and taking blood samples every ten minutes or so.
That's when I finally got to talk to my young doctor. He actually wasn't a bad guy, at all. He asked me about my job and what I was doing at the scanner (the radiologist had called him up, of course).
He was very good with the needles and the handiwork but it became also very clear that he was completetly out of his medical skills dealing with such a diagnosis and dealing with patients facing such a diagnosis. I believe, nobody had ever taught him how to decently handle a situation like this.

Then, I called up another neurologist in the clinic I knew from my job to just talk to somebody who could explain what was going on.

After lunch, I was called up for the MEPs. My girl-friend and I knew that this was the crucial exam. I was totally convinced that they would find pathological first motoneuron activity and that this would settle the deal.
I can't exaggerate how bad I felt and how dark my world and existence had become by this time.

So we went down and the nice Eastern European doctor welcomed us and wanted to send my girl-friend out. But she would not have any of it and matter-of-factly stated that she would stay during the xamination. She also told her that we would not want her to comment on anything during the exam but that she shoul just tell us the result once all was done and finished.

So she got to work.

Now, I said before there would be other surreal moments in this story. This is not just another one, but THE ONE.

By that time, we were both totally convinced that ALS was my certain fate. We both totally expected this exam to finalize the diagnosis and personally I had no more hope left. For the last days I had envisioned how to organize my goodbye, what things to do for the last time, which people to see once again. I had thought about my last will and I had my girl-friend promise me that they would turn off the machines and that they would not extend the suffering.

My god, how much pain all of this has inflicted on my family and my loved ones.

So, anyhow, the situation was extreme to the max.

I lay there on the bench as she did the TMS-thing, shocking me conitnuously over the back of my head and my lower back. That wasn't pretty, but I didn't feel very much. anyhow.
I was numb, emotionally and physically.
I was catatonic, seriously, I was under much pressure and strain as I have ever experienced in all of my life.
I just thought:" Please, god! Please, god! Please...
At least that's all I remember.

When she was done my girl-friend hugged me and we were shaking and trembling from the inhumane pressure.
While the doctor was analyzing the results, we were crying and sobbing in each others arms.
For me, it was 100 percent clear that she would give me the death verdict withing the next 5 minutes or so.

Then she said:" Ah yes, the right arm is alright."

Shocked and in complete disbelief I whispered: "What...???!!!"

"Does that mean that the first motoneuron is not pathological??!!"

She said:"Yes, yes. The left arm is also alright."

I couldn't believe it. ("How is this possible? But they told me differently... Please god, please...")

She went to work again with her calculator. (They calculate the difference between the pulse strength they put in with the magnet coils and the pulse they measure down the extremities. The difference being an indication of normal or pathological pulse transmission)

Then said:"Oh, the right leg is also good. No pathologicla finding."

I couldn't hold back anymore. I was crying hysterically. My girl-friend, as well.

Then she miscalculated and had to start off again and finally proclaimed: "No, also good in the left leg. This is a completely normal finding."

We completely cracked, whining, crying, screaming, sobbing, being all out hysterical.

Then the doctor said the most surreal thing: "Oh, did I scare you...?".
She grabbed two chocolates from a drawer and handed them to us.

I took it and swallowed it down without chewing.

You have to understand, I hadn't had any sweets or chocolate or candy or coffee or alcohol for about 3 months.
Hoping, of course, to somehow find a handle on the twitching and somehow influence my BFS-symptoms.

I said:" Can I have another one?"

She gave it to me and I also swallowed it down in an instant.
Then we went out and cried for another 30 minutes or so.

It was so beautiful, the sun had come out and it was warm and cozy on the skin. The sun shining through the clouds painted a most poetical picture of the lake and the island across the shore.
The world seemed to be such a beautiful place, all of a sudden.
I then called up as many people as I could telling everybody that God had granted mé another postponement and that even I could not imagine how a slight ray of hope had apperaed at the horizon.

And I called up Chrissi.
Now, this is something I will need to elaborate on more at the end of the story.
At this point I just want to mention that she was there for me, listened to what happened, also in complete disbelief, reassured, soothed, suggested alternatives.
Somebody I hardly knew, I had met on the Internet, whom I had met in person only once before, was there, stood with me, gave me her support and would take no BS from these so-called neurologists.
I have no words for how grateful I am or what I feel towards this act of altruism.

Anyhow, the story takes another twist at this point.

I'll quickly save it up to this point and continue in a new post
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Re: Of doctors and dilettantes

Postby chrissi on November 17th, 2012, 3:55 am

That is exactly the point.... How many stories have you read where someone was " diagnosed" with ALS in the internet after twitching? And then the story ends....well, this would have been Tobis story if he would not have seen the specialists. But how many people do not have the money or - even more- energy to see another doctor after being told so. Unfortunately, a slight tension of muscles as it is common in BFS can be misinterpreted as spontaneous activity. Some doctors are aware of that and will go on testing and testing until you manage to totally relax that muscle. That has been a problem for me and other twitchers I know : " if you cannot fully relax that muscle, we will get a false- positive". It is impossoble to miss the nasty stuff on EMG. But it is definately possible to misinterpret signals of a slightly tensed muscle as the " bad stuff". This is one reason why EMGs are not always the best idea. They can give you peace for ...hmmm..... 2 days before the BFS- brain takes over control again. But they can also send you right to hell. This was actually the 3 rd case that I have seen 1:1 now. People with clear BFS signs, being told their EMG looks like ALS( yes, I even saw a copy of thr docs writing), that had to see ( and pay!!) an ALS expert for a second opinion. 3 cases false positive in 1 year. None false negative. When I was talking to gary about Tobis story after getting the bad news, he sais: "His case does not at all look like ALS, it would be the first case like that ever on the board. "And for those that always fear kind of a censorship of bad news on the board: this does not exist!! Not one second there was an implication of NOT telling the people on the board. But all the people that knew about it had a feeling in their groins that this will not be the end to that story and that it would be a good choice to wait until the Experts have seen hin. ALL gad that feeling and said: he is one of us. And so it was!
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Re: Of doctors and dilettantes

Postby chrissi on November 17th, 2012, 3:59 am

Lol Tobi. You are making be blush here :oops:
"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: Of doctors and dilettantes

Postby christo on November 17th, 2012, 4:27 am

Hey Trobes ! It's really good to read that you are fine !
Of course I was jocking about killing you if you didn't have BFS, I hope you didn't took it first degree :lol:

I am looking forward the end of the story !
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Re: Of doctors and dilettantes

Postby MarioMangler on November 17th, 2012, 4:30 am

It's funny, a couple of people emailed me after reading the first part of Tobes' story and freaking out. They were panicked by what looked like an "I have ALS" post, and they were threatening to give up and just leave the board. And meanwhile I was just saying to them "Nah watch, it is a story of a false positive. A doctor told him he had the nasty but it turns out that he doesn't." I told them I have seen a bunch of stories like this on the board over the past ten years, and they all end the same way. If you hang around this site long enough you see a little bit of everything. And false positive stories are of course the most memorable ones.

Anyway glad to hear you are exactly as screwed up as the rest of us Tobes. By the way, you know that BFS sucks too, right? But one day you will be in my shoes and you will be the veteran keeping the peace around the board and telling everyone to just calm down. Until then, know that we are here for you.

Oh yeah and stories like this are why I stay away from doctors. Seriously, I never want another test in my life. I know what BFS and I know how to deal with it and pretty soon everyone else here will too. I have already had enough tests and thank you very much stories like Tobes are exactly why I say that. I would prefer to spend my weekdays playing X-Box.
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 TwitchyDoc on November 17th, 2012, 4:32 am

That was an incredibly touching story and aomething I always fear and have the nightmares about. You description is terribly true and I am so sorry have to go through this.
Yet I think I do not understand - what did they find on your EMG? Spontanenous activity can be fasciculations, firbillations - they found only fasciculations and told you its most likely ALS? ALso the youg doctor saying "widespread fasciculations are a hallmark of ALS" is a bit unsettling for me.
And what was their final conclusion?
Last edited by TwitchyDoc on November 17th, 2012, 4:40 am, edited 1 time in total.
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Re: Of doctors and dilettantes

Postby chrissi on November 17th, 2012, 4:47 am

Docen, they thought they had found fibs and stuff, but that was not the case. You will see in the part where he is sent to Berlin Charite ALS Center. Those docs there btw subscribed absolutely everything written in BFS in a nutshell. And for the widespreadedness: seeing a handfull late- stage old ALS sufferers that were by that point twitching wide- spread left that conclusion for this guy. And this has NOTHING to do with reality. The Charité docs are actually very well knowing about BFS ( or rather cramping myalgia fasciculation syndrome as it is called there) but their newest Information and experiences on this topic cover 1:1 with the information on this board and mayo. We only have 2 ALS centers here and Berlin is the biggest one, so you can have a guess how many ALS patients they see. And they could brush off the possibility of ALS already from his story and symptoms, and this later was confirmed by the EmG done by the head of the ALS electrophysiology section.
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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 chrissi on November 17th, 2012, 4:50 am

Meaning up to now, this was only the first part of the story. This is not titanic. There will be a good end, just lean back, relax and be glad this BS did not happen to you:)
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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 jerry2 on November 17th, 2012, 5:02 am

It was a very emotional story and reading it I could just feel your suffering and I got tears of happynes in my eyes when you heard the good news. This type of story is exactly the one that pushes me away of doing the EMG at all. The first neuro couldn't say me that I don't have ALS and he told about some hand atrophy and that I can not have BFS. Thank you doctor. The second one told me I have atrophy and the slow twitches do not happen in BFS. Thank you. Now I am here alone and I have to persuade myself that I have BFS because I have problems like people on this board have not the ones that ALS patients have. And I am sorry I do not believe any doctor any more, they seem unable to clear me, I have to do it by myself and it is taking a lot longer I think because of that. Every doctor if I tell them my wierd story of 14 months says it can be ALS, yes (not saying it is). I even asked the first one if I go to EMG and it shows nothing if I can not have it then and he told me, I can still have it. Because the false positive could make me go through the same hell as Tobes, so it could scare me further but not prove I don't have it (and from my nerves acting the way they do it is a big chance I would not be 100% clear on EMG) I didn't go. I will go if I start falling down or I see my muscle is gone.

So I can very much imagine how you felt, because you have lived in real my worst nightmare I have if I continue testing myself. On the bright side, after all this suffering you are one of the ones who have 0% chance this is ALS, you have done so many tests and was completely cleared.

Take care, I hope you heel from the psychological damage you got as soon as possible. You don't even mention twtiching any more. Is it gone (froze in fear) or you were so out you didn't even care about your symptoms?
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Re: Of doctors and dilettantes

Postby TwitchyDoc on November 17th, 2012, 5:30 am

Chrrisi: so they thought they had found denervation in few body region, whould would mean ALS. That makes sense. Hope in the Charite the EMG was done and was clean.
Tobes: You have my greatest respect and I admire you for being able to write this so well and emotionally clear, I actually feel tears in my eyes (should I worry about emotional lability now? eh).
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Re: Of doctors and dilettantes

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

Yes, exactly.
"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: Of doctors and dilettantes

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