Seeking answers while attempting to wait patiently

[Anxious123]

Happy Friday everyone

Firstly I would like to take everyone here for dealing with people like me who ask questions about this awful disease that you can't seem to escape.

I read the stickies before writing this post and I would just like some clarification.

My symptoms started out with

Neck pain and stiffness in August, which cause a whole lot of headaches..
Stiffness moved into left shoulder blade. As of a month ago I started having tendon popping every joint it seems like. I have read that Als is clinical weakness meaning you can't lift foot, dropping stuff... Etc, but was there fatigue leading up to that? Like shakiness? (I am fatigued a lot; going up stairs, holding my arms out...). I have noticed that my left arm and hand is smaller than my right, my left hand also looks flatter (thenar muscles in left hand is smaller, also soreness when pressing left thenart, my left thumb shakes when I try to lift it up). I also have very fine fascisculations almost like electrical pulsation or buzzing, in my legs, butt, back, groin, arm, fingers (however mostly legs and feet). I'm not sure now if you mentioned this in your sticky but does atrophy precede weakness?

Thank you so much for you time, and for dealing with lunatics like me with questions. I am waiting for a neurologist to review my chart, and schedule me an appt however they are booked out until April!

Ps; I had an EMG of my arms a month or two ago and that came back normal; is there any chance that in one month that could have changed?

 

[ECpara]

A normal EMG a month ago means no ALS. Celebrate! Pain and stiffness is not indicated in ALS onset . Yes, PALS may experience this LONG after the disease has progressed. My husband has this now after his arm and shoulder have atrophied (he's had ALS for three years). Fatigue is only factored in when the disease progresses, due to atrophied muscles and CO2 buildup as the diaphragm fails (again, my husband is experiencing this now, not at onset). Soreness, buzzing, pulsating is not ALS. Headaches only come when there's CO2 buildup from a failing diaphragm - again after much progression. Never heard of tendon or joint popping. No shakiness. To be honest, most PALS didn't even realize they had ALS, it starts very subtly in one area, like a hand, or a foot. My husband had one symptom to start with - slurring, which was happening due to his tongue failing. Really, celebrate the new year KNOWING you don't have ALS! Have faith in your doctor. That clean EMG is what we all wished for. Blessings!

 

[Anxious123]

Thank you for your kind response; I am going to patiently wait for my appointment. It's crazy how far out neurologists are booked! I feel as though I've been having symptoms for so long that I am just eager to figure out what is going on with me, and hoping to God it isn't ALS. As my ankles felt fatigued and my hands and arms, and the buzzing fascisculations it has been hard to ignore; so when I noticed my hands and arms are different sizes... I couldn't help but consult Dr. Google, even though being a Medical Assistant I should know better. But thank you!

 

[Anxious123]

Can als start on both sides of the body at the same time?

 

[ECpara]

The only ones I know started in one specific area on one side at onset (except my husband whose started in the tongue). One hand might not pick up things as easily, one foot might drop because the ankle starts to flop, etc. Over time as the disease progresses the other side may be affected, but at onset it is typically subtle and in one area.

 

[Anxious123]

Hmmm so my symptoms seems to be everywhere, left arm and hand looks smaller, both legs fascisculations and also arms hands fingers head face occasionally, both ankles and feet are painful; and they feel more bony and weak... Ugh it's frustrating to be in the process of figuring out what's wrong.

Thank you for being so nice with your response.

 

[ECpara]

I really think your safe. ALS onset doesn't manifest all over the body. Good luck to you!

 

[Anxious123]

So ligament popping isn't a symptom of ALS? I don't know what to make of these faint electrical fascisculations... I get normal ones too, but they are now more faint than when they started out. I'm achy everywhere, legs, arms, wrist, ankles, feet, neck, elbows, shoulders, back... My fingers are sore; and my grip feels weak when I wake up in the morning! The neurologist is so far booked out.

 

[affected]

Anxious, I believe you've been answered.

The polite way to use this forum is to ask your question then accept the answer given, rather than try to keep badgering back with more of the same to convince us you surely must have a terminal disease. ECpara has so politely answered you.

Honey, the people here are incredibly ill, far more disabled than you would believe, or they are looking after someone who is very high care needs. Please accept that you need to just work with your doctors now.

I've read your posts very carefully and can't see anything that makes me think ALS. So now you've had 2 people give you this opinion. We all had to wait many months, we were all scared, we do understand that.

I wish you all the best in finding a solution to your health issues.

 

[Anxious123]

i have noticed muscle wasting in multiple muscles, Like both of my thenars mostly my left, and around my knees and my calf and feet! I cant tell if I have perceived weakness or it's just the start of weakening of muscles. Walking is painful on my feet... I've only had the twitching in my legs for three weeks... I've had neck and shoulder stiffness for a while... But does muscle atrophy THAT fast?! I went to my GP and she has no idea what it could be. Sending me to neuro!

 

[Anxious123]

I just really want to know if anyone had these symptoms initially? :/

 

[skipper66]

Please we have politely answered your questions over and over again. Enough is enough. We aren't doctors. The PALs and CALS on here don't have the time or the energy to read or respond to your continuous postings. If you are anxious stepping away from the computer might just help.