Understanding Neurological Diagnoses

[FreddieTheFox]

I just read an article in a magazine about ***Yes I came cross it and I had to read it. That neurologist said that *** begins with: fasciculatios, weakness in hand or foot, or slurry speech. And that it is very difficult to give the diagnose *** and that it can go up to 18 monts untill they can give this diagnose and be sure of it. Sorry but I don't understand this. Why can they say to us in a eye wink that it is BFS but in case of *** they have to see what happens in time, but fasciculations are a symptom of *** Could it be that fasciculations haven't produced weakness yet and that it can take years of very many months ? I don't get this. Are there people that have knowledge about this?Thank you very mucfrederick

 

[sailinglady]

It takes a while to diagnose because the criteria are so strict - you need upper and lower MN signs in three segments (combo of limbs and/or bulbar) plus EMG confirmation. From the off, the neuro may SUSPECT ALS but will not diagnose you till its certain (i.e needs those criteria, and has EXCLUDED all the alternatives). This takes time. Twitching is NOT a LM sign without weakness. Read it again - it begins with WEAKNESS and etc...The long time till diagnosis is NOT because it takes a while for the twitching to "turn into" ALS, its because of the reasons I outlined above.Its EASY for a neuro to say you dont have it and be sure he's right. By the time you're twitching so much you go to a neuro, you will already be weak if you have ALS. He can tell you're OK immediately because you turned the doorhandle and walked into his office.Its much less easy for a neuro to diagnose ALS and be sure early on - its such a devastating diagnosis they wait TILL THEY ARE SURE - this takes time to gather the evidence. But they won't tell you you are fine if they suspect it.Make sense ?Lots of twitching plus NO WEAKNESS = No ALS

 

[Merryy]

If I were you, I would carefully read what sailinglady wrote. Let me try and simplify what I know:a) Everyone fasiculates (ask around. You'd be surprised to hear how many of your friends have fasics. The most common ones are eye twitching and calf twitching)b) Fasic without weakness is NOT ***c) Clean Neurological examination and/or clean EMG = NO ***d) No doctor would claim for BFS had he thought you suffer from another severe condition!FreddieTheFox, please don't take this the wrong way, but it just hit me that entering your posts is just like entering "bad sites" – something which I've managed somehow to avoid. Did it ever occur to you that some of us struggle daily to avoid this kind of unnecessary info?I understand you and share your fears, but if you chose to overlook your condition (BFS/BCFS) and seek info that is related to a disease we all dread, please try to not drag anxious member into this.I apologize if I may sound harsh, but please try to understand me. I am trying to come to terms with this syndrome, but posts like these make me question my doctors and this web site. This has been, and is, a constant struggle for me. I do not want to be consumed by fear.All the best, really mean that!!May

 

[sailinglady]

MayI know there are sometimes some highly anxious people who enter posts that scare others unintentionally. The information is nearly always taken out of context or is simply fallacious.I actually think its a bad idea to "ban" or put off scared people from asking questions like these. If we put our heads in the sand and don't allow ourselves to look this fear in the face, we'll never deal with it. Look how scared people are to even type the letters ALS. Amyotrophic Lateral Sclerosis - look, there I've said it. We don't have it. If we don't meet these fears head on, on the open as it were, this site loses some power for a start, if we start to think "scary" info is being in some way censored or excluded. It should be brought here, dissected, and thrown out as the mis-information it is.

 

[edadoStar]

I'd like you to quote the article you read. In fact, I personally gave you all the published information on scientific papers on the subject (not that much indeed). Listen to the Neurologist. Ultimately whatever you know is because of diagnoses they made. Therefore, they are the only reference point you've got.I'm not aware of any new "official" publication on the topic. If you didn't have as yet an EMG, have one. That's all I can say.

 

[TompeteA]

I think both May and Boatdeck have good points. If someone asked me what is your main symptom I would say " I think I have ALS", or thought. It is the number one thing that bothered me, not so much the twitching, it is what the twitching might mean. I think of this site as a big moral support group to come to when we start to have our doubts, and by typing A"" like this, its a reminder of why we are here, to get it out of our head. Boatdeck it right to bring up the questions, he/she is concerned about it, and can any of the veterans on this site offer some support, or counter the information. I have long ago gotten away from the ALS site, some good information I got from this site. I can offer this, my neurologist, who specializes in neuromuscular, said ALS is fairly easy to diagnose, it presents itself pretty clearly. He also said anything is possible, and that I may delvelop ALS, but the odds where the same as his. I also read on this site that someones neurlogist told him that they had never heard of a clean emg and neuro exam missing ALS. When Lou Gehrig walked into the Mayo clinic in 1939 they Knew instantly he had ALS, he was playing professional baseball just 1 month prior, although not very well. The Mayo Clinic did a sudy on BFS and followed 120 people for 10 years, no one developed ALS. Early on I did read some of the same stuff Boatdeck stated, but my experience with the neurlogical community in the last 18 months does not support it, not even a little. Because my symptoms have continued to worsen, even after being cleared in four neuro appointments and 3 emgs, I still have this little thought in the back of my head, and if I did not, I would not have BFS, it is the main symptom.

 

[jasonpoo]

I think that there are many different stages of coping with the fears and anxiety that are associated with having BFS. There are also multiple personality types and people that have very different approaches to dealing with stress, anxiety, health issues etc.At certain stage of coping or certain personality types, the only way to deal with fear is to face it head on. For those people, they should be encouraged to ask what ever questions they need to get answered even when there is not the most satisfying answers available. We should all be encouraged to seek the level of advise we require for the stage of coping with BFS we are in or for the personalities that we have. However, I also relate very well to having absolutely crippling levels of anxiety when first learning how to deal with BFS that even the letters *** are too upsetting to see (which so many of us relate to). This probably makes up the majority of us on this website.So in order to facilitate multiple stages of coping with BFS and/or different personality types and still be sensitive to those who aren't quite there yet, I think it would be fair that any questions that have the potential to be anxiety provoking be given a "caution to reader" subject heading. And for those that have impulsive tendencies and cannot help themselves from clicking on threads with such titles.. you will just have to get stung a few times until you learn one of the earliest and most important lessons of coping with BFS...avoid reading things/going to websites that might scare you and regularly read reassuring and helpful information again and again. Filtering info is very important in a day that everything and anything can be found on the internet.--Mark

 

[sailinglady]

My mother -in - law was severely spider phobic for many years. Her cat used to bring them in to dump at her feet as some sort of gift. Lovely cat. It used to scare her silly.Some years later we got a pet tarantula. It lives in a cage in the corner of the living room. Now said mother in law lets it walk over her. It is large and hairy. Having been "forced" to sit in the same room as this creature for some months she totally lost her fear of spiders.Now, instead of killing house spiders she picks them up and puts them in the shed.I promise I won't mention Spi**** again.