Young & waiting for EMG after scary doctor's appointment. Tips for remaining calm?

[majinlauren]

Hi everyone! I'm new to this forum, but after a troubling few weeks I felt like I needed to post to kind of get it all out there. I have read both stickies and I hope this post is within the guidelines as I am waiting for my neurology appointment after being referred for unexplained twitching and muscle weakness in my right arm (and other parts as well).

So I'm 22F and when I was young I watched my grandmother pass of ALS. It was horrible, as I'm sure you all know, but she was kind and graceful and fun all the way until the end and I admire her strength immensely. I dont think anyone ever attributed it to a familial thing because she had 5 siblings, 2 kids, and 3 grandkids and I'm the only one who has ever had any issue close to this.

Fast forward and I begin having some finger twitches in the right middle finger that last longer and longer and some muscle pain which I can only describe as burning and nerve-y, weakness, and crampy discomfort in my legs and arms, especially my right arm. Obviously bc of my childhood experience and the first thing on my mind was ALS, but I tried to push it away from my mind and I made an appointment with my nurse practitioner that worked for the same office as my PCP, who is OOO.

She believed I had carpal tunnel and my other body cramps were unrelated. I thanked her and made an appointment with a orthopedic hand doctor for confirmation.

So I just got back from the doctor today and honestly I'm so distraught. He took my patient history, examined me, tested my reflexes and finger strength and he determined that I "definitely do not have carpal tunnel" and that he isn't quite sure what's going on but it might be neurological because I had significant weakness in my right hand (bad arm). That's when I started to sweat a little and I told him "hey, I'm not sure how relevant this is but my grandmother did die of ALS." And he immediately was like well we need to get you an EMG (?) and a refferal to a neurologist. I said, "but she had several siblings blah blah blah" and he said "well a family history is still family history" and said it was nice to meet me and walked away.

I sat there shocked like I couldn't even cry and I could hear them saying OVER AND OVER again outside of the patient room that "Yep. Family history of ALS."

A nurse came in and I had finally broken down and he comforted me and said that he also had a grandparent who had ALS and that he gets worried alot too. I was trying to push the idea of ALS so far back in my mind because #1 I'm under 25 and #2 I don't have significant family history. They didn't seem to take this into account at all or maybe they just know something I don't about Familial ALS?

I'm sitting here now, muscles twitching everywhere, thinking of how weak my hand was to the point where it hurts to pick up a fork. I'm extremely scared and I'm looking for guidance on how to remain calm until I actually get the diagnostic tests run which could be a month or longer. The thought of having ALS has consumed my every waking moment since and I feel like I'm losing it and I don't want to be a burden to my family.

My BF and mom are adamant that it is not ALS for the two reasons I thought it wasn't, but now I'm starting to doubt... I just need help being more rational about it I think.

 

[lgelb]

The odds are still very much against ALS. It is not unwarranted to get an EMG and a neuro visit for unexplained weakness, but there are many nerve problems that affect a hand that are not ALS -- carpal tunnel is by no means the only one. For people as young as you, repetitive motion injuries are very common because you grew up, most likely, with a phone, game controller, or tablet in your hand ... and at some point, progressed to laptop keyboarding.

The idea that picking up a fork hurts is not at all the same as the painless inability to perform movement that is the hallmark of ALS, along with testing such as the EMG. Widespread twitching also argues against ALS.

Best,
Laurie

 

[majinlauren]

Hey thank you so much for the message Laurie!! I really appreciate it from a fellow Laur. <3

I hope it is a motion related injury or pinched nerve or something else mild, because yeah my grandmother never had any pain either one day her hand just stopped working!! Neither me or my mom remember her having any soreness or pain associated with the weakness.

By any chance do you know anything about or have any resources for information regarding the relationship between age in family members with ALS?? I read one study my mom sent to me about the age of onset being around 7-10 years younger for subsequent generations with familial ALS, but I can't find anything to support that idea that someone like me in their early 20s would develop ALS based on their grandparent having it in their 60s. Which is hopefully another sign that it is something else besides ALS.

 

[lgelb]

Typically, age of FALS onset is about the same from generation to generation...so, yes, another reason to doubt there is a relationship. Across the genetic subtypes, mean age of onset for FALS is in the late 40s in some studies, but again, that is a varied group.

 

[Nikki J]

I think there was a paper about c9orf72 at one point talking about possible genetic anticipation of 7 years but subsequent papers have said it isn’t so. Also familial ALS on average tends to strike about 10 years younger than so called sporadic.

you unfortunately encountered a non neurologist with very limited ALS knowledge and probably a poor bedside manner. The nurse who fears ALS because of their grandparent is just another worried person and he didn't seem to be saying he thought you had cause to worry due to your symptoms.

as Laurie said and your experience supports pain in your weak hand doesn’t sound like als. When you have your emg remember an emg shows many things and yours may be abnormal but show something that isn’t ALS. It is important that if that happens you believe in the interpretation

 

[majinlauren]

Hi y'all!

I wanted to post a follow up about my EMG to reassure others that might be experiencing similar symptoms and have anxiety about ALS being the cause for whatever their reasons are.

To recap so you don't have to scroll up: soreness, finger weakness detected by orthopedic doctor, constant nerve-y pain in same hand that feels like you hit your funny bone, and widespread twitching that was mostly concentrated in that same hand.

So I was a nervous wreck up until my EMG, and the electricity part hurt like a mf!! But, I was given the results of both the needle part and the electricity part by the neurologist after the exam. She said that my muscles and nerves were very healthy, and that she was not sure what was causing my symptoms. She has a feeling it is still a pinched nerve in my neck that the EMG apparently is not great at detecting.

However, I was very candid with her about my concerns regarding my "family history" and ALS. She said that ALS is very specific and almost immediately noticeable in an EMG (even in early stages) and I definitely do not have it. I know some people on here doubt EMG results, but I do not think that should be the case. If you are someone with those feelings, please take my case as encouragement and know that unless I come back here and update, I was not diagnosed with ALS after my clean EMG.

I also want to thank the people who take the time to reply to posts on this part of the forum for sharing their knowledge and experience with people who are struggling with the anxiety of trying to get a neuro/muscular condition diagnosed. Y'all will be in my prayers!! Please have a peaceful and full life regardless of circumstances. <3

If anyone needs a EMG neuro dr. recommendation in Central Texas or wants some more background info on my post, feel free to message me and I'll get an email notification!