People waiting for answers

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Drewbaby

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I personally have been trying to figure my situation out since August 18th of 2019. Fasics, localized and otherwise,right shoulder drop and smaller trapezius , right dominant arm became smaller than my left, lost it’s reflexes, right side of neck became small and sore causing slight head lean, elevated homocysteine, hyperintensity in the motor cortex of the brain, unrelenting tightness of my right leg, shocking nerve pain on contact in all four limbs. One “essentially normal” Emg.

I have read such conflicting information about Everything from biomarkers to Emg’s, you name it, someone has a totally different professional opinion. My neurologist it’s chalking things up to vitamin deficiency While my primary doctor is especially concerned by my notable asymmetry. I am starting this thread to help myself and others gain some insight or recommendations as to what to do next during this limbo. Please feel free to share your experiences.
 

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affected

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Nothing suggests ALS in the slightest. People won't share their experiences, this is an ALS forum, and you can ask us, and we can say this isn't how ALS starts at all.

Have a good read of this, read through twice, it is our official position and prevents our members on ventilators, who are paralysed and using their eyes or a toe to operate computers from having to type things over and over.
It's really helpful.

 

ShiftKicker

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(Mod note, moved from General)

Past threads here:


 

Drewbaby

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Ugh. I totally goofed on this one. I do apologize, as it clearly states that this is not a place for the undiagnosed to congregate for lack of a better word. I am also reading a lot of information in the “read before posting“ post that would in fact be contradictory to ALS in my situation. I seem to have diffuse nerve pain on contact in all four limbs, And sometimes I can feel a dull ache That I am unfamiliar with in my affected areas. I’m not familiar with nerve pain, this is all new for me but I’m assuming that’s what it is. It’s almost like I’m hitting my funny bone, but everywhere.
I figured maybe some people in my shoes could benefit from having a thread while in the limbo of the exclusion process. And I have posted here before but I obviously did not pay enough attention to the part of the thread that clearly states not to do that here and again I apologize.

I’m sure this thread will be shut down, and I totally understand that. I have a close friend with ALS, I know that certain things have become painfully difficult for him. I can imagine that the people using the eye gaze technology to be communicating on here do not want to be wasting their time doing anything more or less then helping fellow PALS and answering these questions on the “do I have ALS” thread and I respect that.

I honestly wasn’t trying to weasel my way into communicating on here in a way that I shouldn’t have been, I just thought it was a clever idea for people like me in the limbo of seeking diagnosis, and just to clarify, I’m not looking for a diagnosis, just some people that share some common ground. While I am here, before this thread does get closed, there are just a few things that kind of brought me back here wanting to talk. I’ve noticed that while the “do I have als” thread, as well as the majority of medical professionals/informative websites deem A clean EMG a specific indication that one does not have ALS, It is really only while conversing with ALS patients on this site ironically enough as well as other places like Facebook or even in one instance in person, do I find contradiction in that statement. I’ve had numerous diagnosed people, I’d say about five or six people, tell me that they had multiple clean Emg‘s prior to their not so clean Emg that ultimately led the way partially to their diagnosis. I’ve read a lot of conflicting information regarding this as well, whether it be theorized to be operator error or just of unknown causes.
I don’t mean to trigger any newcomers or strike anxiety and anyone in this limbo or eight have a suspicioI don’t mean to trigger any newcomers or strike anxiety and anyone in this limbo or that might have suspicions. It’s just a bit confusing to me but a lot of reputable sources say clean Emg equals no ALS, while ALS patients sometimes say quite on the contrary. And that’s sort of what brought me back here. Whatever is going on with me is insidiously progressive. Like I said, I’ve been dealing with these symptoms since August 18 of 2019. Right hand felt kind of funny, a bit weak, and since then it’s been very, very slowly downhill. My voice has become raspy and I thought I had a chronic sore throat until I realized that the muscle running from the back of my skull down to my collarbone on the right side thinned out a bit, causing what is actually a sore neck and some flaccidity next to my windpipe. Now there’s always food caught in my throat and always a bit of leakage of fluid out of my nose while drinking liquids. I don’t choke on them but they seem to be making their way out of other orifices of my face. Honestly I don’t want to dive too much into my symptoms, they are not anything different than what anyone on this page has heard about. Fasciculations daily, Asymmetrical muscle wasting, weakness in the smaller muscles, Spastic right thigh, flaccid right arm; but contradictoraly I have received the clean EMG And appear to be having symptoms and i appear to be having symptoms unrelated to ALS, such as this shocking nerve pain on contact/sore muscles/ability to touch my tongue to my nose and although the smaller muscles in my right arm and hand make everything feel 5 pounds heavier, I can still do my normal amount of push-ups and pull-ups. It’s the little things like holding a cup of coffee or holding my phone that become too much of a labor to do for too long and what was once my dominant strong arm that was bigger than the other. I can still do my normal amount of push-ups and pull-ups. It’s the little things like holding a cup of coffee or holding my phone that become too much of a labor to do for too long and what was once my dominant strong arm that was bigger than the other.

i’m here again because I had a Tele visit with my neurologist as a follow up due to the coronavirus, I do suffer from pulmonary sarcoidosis leaving me at higher risk, regardless I don’t think my neurologist is seeing patients at all. I was complaining about my caved in Palm, she asked me to send over some pictures which I did, after which she referred me to a doctor Jackson and lI was complaining about my caved in Palm, she asked me to send over some pictures which I did, after which she referred me to a Dr. Jackson in San Antonio, an ALS specialist. RespondRespond me back down the rabbit hole for this spun me back down the rabbit hole for sure. My right palm is clearly atrophying and arthritic, and I can feel it beginning in my left hand now too. I showed this to a friend of mine with ALS as well as my story and he told me that as much as he hated to say it, it sounded and looked like ALS to him. It’s been an exhausting 10 months. I have a three-year-old daughter that really needs me, I’m a single parent and this has been in the forefront of my mind for close to a year. It’s just tough and again I really do apologize for making this thread against community guidelines, I know it might be hard to take my word for it but it was a truly honest mistake. I just don’t know where to turn with this stuff, But I promise it won’t be here unless it absolutely has to be, in other words, if I get diagnosed. Being that I have sarcoidosis which can affect the nervous system in rare instances, I guess you could say I’m doing my best to bank on that, Or potentially nerve damage from over prescribed medications that no doctor or pharmacist seems to think can cause these symptoms. I just have to let it go and continue down this path Until I figure out what’s going on for better or worse, but I’m glad that you don’t seem to think that I have ALS. I hope I get to the bottom of it sooner or later. Sorry again for making this thread, thought it was a bright idea until I reread the rules. Wishing you well during this trying time
 

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Bestfriends14

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I call BS on someone saying your hand looks like someone with ALS. Big, fat BS. You haven't lost function, which means you dont have atrophy, which means you dont have ALS.

Move on, please. Move on.
 

Nikki J

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This is way too much for me to read. I will just say those people who report normal emgs are generally upper motor neuron dominant and have major abnormalities on clinical exam showing umn disease before their lmn disease kicks in. They aren’t told fine by their neuros. I believe we address it in the important post clean clinical plus normal emg = no MND

i would suggest starting a facebook group where you and other undiagnosed people can congregate
 

KarenNWendyn

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I’m sure this thread will be shut down, and I totally understand that.
You asked for it, you got it. Please reread all the answers you’ve been given previously. Best of luck. Please do not start another thread unless a neuromuscular specialist diagnoses you with a motor neuron disease, and I don’t think that’s likely to happen.
 
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