Razor

Adding to your conversation with twitchy. All weakness is some sense perceived until confirmed by the neurologist. I knew my ankle was weak before it was confirmed as clinical weakness but if I had a neurologist by my side when it started it would have been confirmed. If a neuro examines you and finds no weakness then it really is perceived weakness. And the thing with ALS is the weakness occurs because a Signal does not get through. I saw a great analogy. It is like the muscle receives a telephone call to work. One day the call can't get through and bingo it does not work any more. Sometimes surrounding muscles can take over for a while. Sometimes they can't

I understand, and feel the same way. The only real help or knowledge I/we can get is from our tests and doctors. Thanks for sharing your thoughts and feelings, I wish you the best, of course!

"I think what's important is locking in the plan either way!" -this is a very good point. I am going to make the appt. on Monday Although now I can do several reps of 30+, it is STILL twitching non-stop and is unsteady and weak. I do get some pains, but I can't realize them as something that "poitns away" when I am overwhelmed by twitching and weakness.

Anytime I've taken blood for anything, the results were always fine. EXCEPT I have a 1:160 postive ANA (IGG - or something), which indicates something or nothing. Like how many People on here talk about twitching, it can me everything or nothing at all.

Good news about the CK. I know what it is like to HOPE that the blood or other diagnostic test will show something, ANYTHING!

Lol you made me try making all sorts of eyebrow moves. Yes! It is very important to note and keep in mind that all those symptoms at once points away from ALS, from what I've learned (I've read that several times, multiple places). Maybe something else, so that would be a blessing.

PS. My husband is almost forcing me to wait it out and not go to the self pay neuro, seeing as how there is pain. I touch my arm in some places and it feels like I should have a big bruise there, but I don't. I told my husband that I will try to wait as long as I can. Will probably have lots of freak out moments in between then.

Are you on BFS forum site?

Sorry, posting an update about my arm.....although I was able to do 30 reps this morning, I don't really feel any improvement. My arm/hand is clumsy as it was before, and it seems to be twitching more now. Maybe it's from the physiotherapist pressing/deep massage...but I'm going out of my wits! I called a self-pay neurologist to see if I can have an appt next week (the self-pay ones always have quick appts), for a clinical exam and EMG. I just really need to know if I need to worry about this and my throat. That's it!!! It will cost me like 300€uros but I don't care. I can't live like this. I feel, if I am having these symptoms and the EMG is OK then I can stop worrying (at least about these two problems). It will be my first EMG done after weakness has started. I have a neuro appt scheduled for 6-Feb, where my insurance would cover the appt, but that is too far out. I am going insane.

I still have this throat issue though. I can't figure it out. It's a "globus" and tightness but it seems I am not able to get things down. Last night, a magnesium pill got stuck. It was painful and I could taste the pill very strongly. I had to drink and drink and gulp and gulp to get it down. I read it could be GERD stuff, so I took a Nexium and have just a little bit of improvement. I have these throat drops that also seem to help (at least with the soreness). I guess time will tell if this gets worse or lets up at all.

I did not realize how hard my neck/shoulder muscles were, or how many knots I had until these last couple physiotherapy sessions. He presses on just ONE of those areas, and I get dizzy and tear up from pain, and I feel sensations down my arm. The ortho gave me lidocaine shots to help loosen the muscles. Both of those things seem to be helping me...I was able to do the 30 reps this morning in my left arm WITHOUT having to struggle. Remember, before, I could only get to 20....

So this is why I am asking if you tried this out. Any time I felt weakness (in my left leg and now left arm) physiotherapy has helped get it back to normal.

My symptoms started with twitching too, without anything else. Once that weak "feeling" sets in and you are still twitching or especially get a hot spot in that weak area, it's enough to make you go insane! I can deal with all kinds of pain, bring the pain! I just can't take the weakness.

About your right hand and forearm. I have the same thing in my left side. Just a few questions....have you been to an orthopedic or to physiotherapy? I am saying this because I NEVER ever thought the hand and arm weak feeling could ever come from my neck/shoulders, but appraently, this seems to be the issue.

Thanks for the explanation about the EMG - I understood it that way too but....for instance, Nikki in my thread said her first EMG was clean. I read about other cases like that too. This is a real beast of a disease, I consider it the absolute worst and I get so angry for everyone who has it that there is no real treatment management or cure...after 75 years or something! This is unacceptable! I donate what and when I can...it's just so unfair and I feel so so so deeply for the FALS and PALS and their caretakers and families...

as I am typing this, my left hand is messing up the keys. At physiotherapy last night, the therapist said I had very intensly tight shoulder/neck muscles, so bad that he could feel an "edge" to one of them. As he trigger point massaged my neck and stretched it, I could feel sensations down my arm. I also got very dizzy from it. Today there is less pain, and very tiny bit less twitching, but it seems the weakness has worsened. I can take all the pain in the world, it's the weak feeling that scares me and changes my entire life! I can only HOPE this weak arm has to do with this neck/tight muscles, but no one knows for sure. This whole "unknown" with how ALS starts and what is causing these symptoms is way too much for me to handle. We can just be glad that our EMGs were clean. Mine was done 10 months after twitching, but it was only done in two spots, left calf and left upper arm, when I was having issues with my right hand at the time. Weird, right?

Hi Razor - I understand what you mean about the different stories. It is very hard to get the "unique" cases out of your mind and stick to the "80% of cases start like this...". But then, if you get an "out of the ordinary" onset from an already rare disease then that is highly unlikely...then again, it seems like many many people have these "out of the ordinary" cases, where widespread twitching was first present for a long time without weakness, or they had pain at first.

sorry about the several posts , there is a cut off at 1000 characters. Please read from bottom up.

It seems that my widespread twitching changed from widespread to just this left arm/shoulder and my throat. The twitches in the rest of my body I've had before are much less. This is also freaking me out!!!

What symptom or symptoms are your biggest concern right now?

Another plan of action for me: New psychologist appt for tomorrow. I am hoping for some coping methods and maybe different anxiety meds that fit me better. My previous therapist, the number of appts I had with him ran out and he did not help me much anyway.

Second biggest concern - I developed major tightness in my throat at the base, most likely from anxiety, but who knows! But it is accompanied by intense throat twitching! I've never had twitching there before! This made me feel like I can't breathe and it developed into a real sore, swollen throat, which has muffled my voice and makes it painful to swallow. I can swallow ok, but I have post nasal drip and I am having more trouble clearing that than I could before. I know bulbar starts usually with slurring, which I don't have, but then...there are those "other" cases. I am trying to be patient with this and just hope the soreness goes away with time, like a normal sore throat would.

One night, I had such a pressure headache, I took my blood pressure and pulse, and pressure was low/normal 98/76 but my heart rate was 101 - just from anxiety!

Good thing is that there is pain, I believe with you as well. For 2 weeks, I had MASSIVE pain and painful spasms in that neck/shoulder area, that is when everything started (weak feeling, constant and intense twitching). Now, I still have pain twinges and the feeling like I slept wrong, know what I mean? So, I read that MOST people with ALS do not have pain at onset, but I am worried about those which did state they experienced pain in the beginning. And then I wonder, what kind of pain did they have, how bad was it (was it real bad or just sore), where was it (was it in the same place where they got their onset of weakness)?