Scared, need some guidance

[Joshmc1897]

3 years ago I started getting twitching and weakness in my left forearm. I went to a neurologist and was told my EMG and nerve study looked good. I’ve had twitches and slight weakness in that one arm every since, but I just kind of got used to it. Last few months my bicep seems to be getting weaker but it’s still all localized to the one arm. Twitching, cramping are present most of the time, especially in deltoid and bicep. I have full function and dexterity, just weaker and slower. I have no pain other than my shoulder hurts on occasion. I’m very scared, my doc thinks it’s rotator cuff, but I would have pain in that instance. I am driving myself crazy w worry! I can’t eat, can’t focus on work, I’m in a state of total depression. I’m grateful for any thoughts! I’ve read the post before asking these questions but w the weakness more pronounced I needed to ask

 

[Nikki J]

I highly doubt it is ALS but rather some localized issue. However you deserve answers and a treatment plan. Was this your gp? What next? Physical therapy? Orthopedic consult?

Please follow up with your doctors and ask what is wrong and how do I get better. Focusing on a single diagnosis will hurt your chances of success. You can see that happened already. You had an arm problem. For whatever reason had an ALS rule out and no answer. Had you pursued it then you could have had treatment and would probably be better

 

[Joshmc1897]

Yes ma’am, I see my gp today and have scheduled w ortho! My mental state is todays focus because I’m scared! You are right I shouldn’t have accepted the symptoms as part of life and kept looking for answers! I’m grateful for you taking the time for me!!

 

[Joshmc1897]

I’m so scared!! Three years ago, I started twitching in my right arm, had an emg and neurological exam and was told nothing wrong! I really just learned to live w it because I wasn’t near as weak as I am now. However in last few months my left arm is so weak, it’s so skinny and fasciculates day and night! I can barely curl 5 pounds. In last couple weeks I’ve developed twitching in both feet! No weakness yet but as soon as I get up they twitch nonstop! I’ve had mris, of neck shoulder and brain, they came back clean except for a bulging disk and neuritis in some nerves in shoulder! It’s taking forever to see anyone! I’m so depressed!! I can’t think of anything else! I can’t eat , sleep, it’s killing me! Please give me some advice or any thoughts you could have!! I appreciate your time!!

 

[Nikki J]

You have obviously seen someone. You had multiple mris. What does the ordering clinician say? What os their plan? If they can order an mri they can order an emg. Twitching alone is meaningless. Your weakness is localized. Did they talk about how your mri results correlate with your clinical

 

[Joshmc1897]

I’ve seen Neurology and orthopedic, Neurology thought I needed surgery but surgeon said he sees no reason! Didn’t see anything on mri he thought could be causing this, he referred me to a neurosurgeon as well. I’m waiting on emg still, and bloodwork. I honestly don’t think the neurologist they sent me to is totally versed in ALS, he told me he specialized in epilepsy. He told me most people who have it pass in 6 months, which is not true, and it would be much more wide spread in 3 years time! He said because my emg was clear three years ago he didn’t think I needed one, but he ordered it! I’m waiting for that! I’ll admit my ignorance but could it possible to have a clean emg in an atrophied Fasciculating arm and shoulder? The doctor did say I have muscle wasting! I’m so grateful y’all are here for people who are scared like I am! Thank you

 

[Nikki J]

If ALS is causing atrophy and weakness it absolutely should show on an emg. If there is another cause depending on what it is the emg ( and/or the ncs that is usually done with it) may or may not show the cause. Remember that emgs can show many different issues so people can have abnormal emgs that have nothing to do with als.

 

[Joshmc1897]

They have moved my emg up to Friday! I am so worried, I’m trying to be positive but my symptoms are so severe I can’t imagine I’m gonna get good news! I don’t want to sound like a wimp or keep bothering you guys, but I need to talk about my fears! No one else will listen, they are so easy to dismiss my fears because I’m on google too much! I know what I’m feeling and i have read so many of your stories! It’s tearing me up inside!! Thank you for listening

 

[Clearwater AL]

Josh,

You say you need to talk about your fears. That's really not our
purpose, holding your hand until this Friday.

You say no else will listen… they dismiss you because you’re on
Dr. Google too much. Well there’s a first diagnosis.

You can’t imagine you’re going to get good news! That comes from
Dr. Google getting in your head.

You’ve have read so many of old threads that has done nothing
but amplify your serious Health Anxiety.

This Friday you have to believe what you will be told.

I hope for you it is good news backing up the EMG you had three
years ago. Until then…

 

[Joshmc1897]

Thank you, wasn’t asking for my hand to be held, just needed to talk! I apologize

 

[lgelb]

I think what Al is saying is that sometimes articulating your fears is healthy, like when you really have or are taking care of someone with ALS.

But when it is only an extremely distant possibility, [some here might argue zero in your case], focusing on your fears and reading up on ALS really messes with your head and makes any physical problem that much worse.

Friday will be here before you know it, if you "spend" the rest of the week on health and happiness. And presuming the EMG is reassuring as regards ALS, as I expect it will be, plan ahead and find a good PT clinic that you will ask your PCP or neuro to refer you to. Take a nature walk. Pursue a passion project. Stay away from Google, and anything about ALS.