BackgroundNoticed fasiculations between nose and eyebrow 10 months ago, googled, read als, read about foot drop, read about strength testing calves, thought, great, i dont have twitches in my calf, 1 week later, twitches in calf, calf aches while driving, took 6 days to recover after playing soccer.1 month after noticing twitching, swallowing became 'laboured', and while i wouldn't use the word difficult, i would definitely say uncomfortable. Neurologist Nov 8th - 8th months after first noticing twitches. emg - normal, with the presence of fasics in both calfs, clean clinical, 'reflexes of a hyper person' but not hyper reflexic, (he was french, i guess (hope) he meant reflexes of an anxious person)said there were 3 types of patient, Not ALS, maybe ALS, and Definite ALS, "you are in the NOT als camp.things were great until 3 weeks ago. Newest SymptomsI noticed that when i swallow, i only feel liquid/ saliva go down one side of my throat, my left side. I have come to the conclusion that this has to be due to weakness, and therefore bulbar onset ALS. I have not found anything like this anywhere online, just a couple of posts that put it down to muscle tension?I visitied my family doctor, who right away said 'scarring from gerd' but did not even look at the back of my thraot before he made this diagnosis, "do you have gerd/acid reflux, "yes, sometimes "then it is probably scarring from the acid."two days ago i noticed further that both arms become extremely fatigued doing simple things such as typing, and shaving.my tricpets almost feel like they are burning while shaving and i have to keep changing hands with the razor, while typing they feel like i have just lifted 100lbs 30 times. I had my right arm emg'd on Nov 8th and it was totally clean? can weakness hit that quickly?I also noticed that my neck is stiff and 'pops' alot and also aches.To me it seems like als has started in my throat and is working its way down.Has anyone at all experienced any of these types of symptoms? is their another explanation????? I honestly can not continue like this, every day mundane things like shaving and eating lead me to believe I had a terminal illness.
Adventuring into an ALS Diagnosis
- Thread starter GeoffWab
- Start date
Hi colleague,if you read even such common source as Wikipedia, youd'see that fatigue and swallowing issues are combined in disroders like fibromyalgia and GAD. having Fibromyalgia is about 2-4% chance, having GAD about the same, both much higher than ALS and bulbar onset of ALS.I hope English Wiki is more or less relibalie source (mostly because it quotes rather regular medical sources and reference books for diseases accepted worldvide).by the way you can choke with food and saliva, do not worry it is common in our fellowship.in the bulbar onset your throat shuts up under pressure of food or liquid instead of opening due to interruption of normal reflex. In the GAD you may have high tonus of throat muscles, in Fybro - Wiki says it is due to the specific structure of smooth muscles but also not dangerous.
The one thing that the patients on the ALS forum tell their new colleagues is "its not ALS until it can't be anything else." In my head, it cannot be anything else. Yet, despite knowing I have bad GERD / LPR and am anxious over absolutely everything, i guess that qualifies as GAD.Right now i will take any three letter diagnosis apart from ALS.
Stiff and popping neck also indecates Fibromyalgia or similar musculoskeletal conditions. Actually reading Fibromyalgia decription was like looking into the mirror: pains, cramps, stifness, fatigue, clicking joints, nausea (some fellows complain for that), absolutely normal bloodwork etc.too many symptomes without solid deficiency picture strongly points to our precious triangle - GAD/OCD - Fybro - BFSas for your family doctor, I may say that when I had severe flareup in my late 20th (painful swalloving etc.) which most probably was GERD (now confirmed for sure), doctors had loked into my throat. What did they found?Nothing. While I had a clear feeling that one side of my throat is swollen, painful etc. it cost me a full size bloodowrk but nothing was found of course... And I was dizzy, stumbling etc. Should I know that time that this is due to my GAD...it weould be much easier 
))
))well, if your throat is still working anyway, it may mean that you have some loss of sensory ability. Once I had quite a mild case of that, and it was related to bad neck circulation. I also have transient sensory mouth issues for about a month and a half which I may characterise like numbness in the throat but this is seemingly harmless and always lead to coughing which releieves that 'numbness'. Not being a neuro, I can hardly imagine what can cause loss of sensation without loss of abilty to swallow - but many of us have some weird sensopathies too.
anyway bulbar onset is not something of sensory issues. it is 1) disruption of swallowing reflexe 2) loss of muscle tone - changes in the voice tone and pitch, difficulties with chewing etc. Check if you do not have any neck discopathy - that can rather cause unilateral numbness due to effect of sensory nerves, on my point of view.
JohnnyRocket
Well-known member
Jon, you know you don't have ALS. Stop focusing on your symptoms and move on with life. The road you're currently on is a dead end.
Yulia,You talked about ''disruption of swallowing reflex''.... Can anxiety cause this problem too? It has happened to me lately and needless to say, it scared the hell out of me. It has happened the other day two or three times in a row while I was eating and then nothing. It happened again today, while I was eating dinner, and I freaked out big time. It's like I was completely paralysed, without any swallowing reflex for a second or two. What the heck is that? 
Jujulee
JujuleeHi Jujulee,I read in some of psychological sites that anxious people can have severe dysphagia, and that there is even a food choking phobia called can not remember how, in all that greek words, causing sometimes quite inability to eat (the girl whose confession I read admitted that she understood completely it is a phobic reaction but can not do nothing with her own body). I believe in any case of real troubles we need to seek rather medical advice because we often can not distinguish our feeling from real failure. I remember I was experiencing feeling a food and liquids getting in my nasal cavity last year, while in fact it was not so - I need to calm myself to understand that. I remember this year a recurrent feeling of anesthesia in my throat while in fact it was not so because I start to cough and it releieves (so probably it was somethinhg GERD-related)... I think medical swallowing test is a real way to see if your swallowing reflex is in place or not, should it be a constant and even encreasing trouble.
Hi Jujulee,I read in some of psychological sites that anxious people can have severe dysphagia, and that there is even a food choking phobia called can not remember how, in all that greek words, causing sometimes quite inability to eat (the girl whose confession I read admitted that she understood completely it is a phobic reaction but can not do nothing with her own body). I believe in any case of real troubles we need to seek rather medical advice because we often can not distinguish our feeling from real failure. I remember I was experiencing feeling a food and liquids getting in my nasal cavity last year, while in fact it was not so - I need to calm myself to understand that. I remember this year a recurrent feeling of anesthesia in my throat while in fact it was not so because I start to cough and it releieves (so probably it was somethinhg GERD-related)... I think medical swallowing test is a real way to see if your swallowing reflex is in place or not, should it be a constant and even encreasing trouble.
Thank you for your answer Yulia. I hope you're right. I hope in my case it's all psychological and not mechanical... A medical swallowing test is what I want to avoid as much as possible! I need to stop focusing on it because the more I do, the more things get worse. I just hope it won't happen again because it is so scary...