wiftSwiftquill
Active member
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 Emilyomouse hospitals these days, as due to the bad pay and working conditions many Emilyomouse 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.
)
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.
)))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 
((
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
I am looking forward the end of the story !