christinasgirl123
Well-known member
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.
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... 
) 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... 