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I think I posted this somewhere on here before but I'm not sure it is in the right place, I’m sorry for the repeat if anyone saw the first post!

Hi my name is Ashley, I’m a 26 y/o registered nurse. I appreciate any and all of your feedback.

About 3 months ago I had sensory symptoms including paresthesia in both my feet and intermittently other places. I went to a neurologist, who believe on examination that I was fine and sent me for a MRI of my brain which came back normal. I took the normal results and dealt with the symptoms and put them off as something benign.

About a month ago I woke up with this feeling in my arm of heaviness. This has continually gotten worse and now my right leg has begun to feel the same. My right hand also feels bizarre, like clumsy and not quick as fluid in it’s movements as my left. At the same time muscle twitching started all over my body but now it seems to be more focused on the right side of my body and in muscles that appear to be atrophying. I went to the same neuro a few days after symptoms started and he assured me my exam was fine. I did not feel fine and asked to be referred for an EMG.

I then went to another neuro who agreed my physical exam was normal and agreed to the test to put my mind at ease. Nerve conduction study and EMG were done which neuro said was ‘normal’ however he prescribed an MRI of the cervical spine and 10mg Amitryptyline daily, saying that I was a very anxious person. I called him back because I found it odd he prescribed the MRI, as this must mean something prompted him to do so. He said I had polyphasic potential in one muscle of my arm from the EMG but this was not indicative of ALS and that he still was not concerned about ALS and that it was still normal to him and no cause for concern. MRI of cervical spine came back normal (no pinched nerve, so no explanation for my symptoms).

Over the last couple weeks I feel as though my right arm and leg get worse daily, they both still function fine but my grasp in my right seems to be weaker now than my left and when I try to grasp hard I feel like different muscles are doing the job to make up for weak ones. The muscle between my right thumb and pointer now appears to be sunken in compared to my left and my right calf is visibly smaller than my left especially when I flex it. My right side also fatigues much faster (ex. If I wash my hair my right arm is burning a couple scrubs in).

My neuro acknowledged that the muscle I believe are atrophied are smaller than my left but he seems to brush it off (kind of in a how do you know they weren’t always like that way). My calves and thighs feel very tight; especially my right and I have had some foot cramps as well. I realize I sound crazy, I’m well aware of that. My wedding is in 3 months and the thought of missing out on all the things myself and my wonderful fiancé have planned for our life together is enough to drive me insane.

I’m frustrated and tired of feeling alone with my symptoms because everyone around me seems to act like they think it’s just in my head. I asked the neuro to refer me to an ALS specialist which he feels is not necessary but said he would if I insisted. I’ve read posts on here of a young woman having a normal EMG and then being diagnosed not too long after, meanwhile mine wasn’t completely normal to begin with. I can still function through work as a nurse and bartended yesterday for 8 hours but after making a few drinks my right arm and leg felt like jello. I do still have some parathesias in these limbs at times and my muscles seem to be sore more often than not.

Attached are some pictures of what I believe is atrophy.
 

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Nikki J

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There seem to be a lot of feels in your description. Apparently you had normal exams and emgs. Your attachment is not visible to me so I can not comment except neuros don't usually miss atrophy.

Re the person with normal emg and diagnosis. It is discussed at length in multiple places here that umn dysfuction ( found by neuros on exam) precedes lmn dysfunction ( found on emg) certainly happens but the person was not told they were fine. I suspect you refer to something else ( kindly do not post the username of the person). There have been in the history of this board people who claimed diagnosis falsely. At least 2 confirmed cases of fraud have been young females. There are others who are suspected over the history of the board. Don't believe everything you read. Do believe your doctor
 
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Nikki J, thank you so much for you reply. I have tried again to attach the pictures. The neuro did acknowledge them but dismissed them saying something along the lines of maybe I was always that way but I've been watching myself too closely this week and it doesn't seem to be the case.
 

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Here is the dent in between my right thumb and pointer finger, even the skin seems to look loose.
 

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affected

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I can't read your post, that is a huge block of text. Paragraphs are very polite.

There is a post titled READ BEFORE POSTING. Please do that, as a nurse it should be easy to read and make sense.

Your hands and feet are normal, so whatever you are asking, by Nikki's reply I would say you have no way to have ALS, but I see by your title that you have convinced yourself. We do not need any more photos as much as you enjoy obsessing over minutiae.

That's the common theme in this section of the forum - doctors and those who know ALS say no way, but the person posting knows better than everyone else. The argument goes back and forwards and behold the poster disappears to go live their long life after all.

Go get help and have a wonderful life.
 
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Affected- I apologize for the large block of text.

I did read the stickies prior to my post. Last night my right outer thigh and the area between my right thumb and right pointer finger twitched all night until I fell asleep. I realize I have no true clinical weakness at this point but I do find it every concerning that what was once intermittent general twitching is now prolonged, visible twitching in the areas that are visibly smaller to me than my left.
 

codyclan

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We can't emphasize this enough--twitching means absolutely nothing. You don't have clinical weakness, your pictures do not show atrophy (think concentratation camp victim for an example of ALS atrophy). You don't 'feel' weakness in ALS, a muscle just doesn't work. There's no feeling like your leg is jello--in ALS your brain says move to your muscle and the muscle doesn't move. You had a normal EMG. You need to address your anxiety and work with your doc to find out what else might be going on with you as it is not ALS. Let your doc diagnosis, don't hem them in by only focusing ALS, especially since you do not have any ALS symptoms.

Best wishes to you.
 

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Ashley,

A massage and some dietary improvements might help you and I'd re-assess your bed setup, esp. your mattress, and how you sit lest you put undue pressure on or overcompensate for your R side. I don't see any ALS in your pics or description. And the normal EMG puts a cap on that.

Best,
Laurie
 
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I appreciate all of you taking the time to respond. You all say my emg was normal but there was an abnormal find - the polyphasic potential in my arm, although the neuro brushed that off as normal in a lot of people, I have no other clinical findings to explain it. I promise not to waste anymore of your time, I just wanted to explain that.
 

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Oh, holy shit, Ashley, get off the line.

Your doctor told you the finding had nothing to do with ALS.

If you don't believe all your doctors, go get new ones. Start with a shrink.

But do not waste our time. Some of the people you are questioning are actually dying, and the rest have lost loved ones. Show a little respect. You don't have ALS and you never will have ALS, so go live a long and happy life with your neuroses and you're welcome to it!
 
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I'm genuinely sorry for anything I said that may have been taken offensively or disrespectfully. I'm a pediatric ICU nurse, I've seen the most unthinkable things happen and I'm sure that doesn't help the anxiety I have over this. I care for people's loved ones as if they were my own, so I'm very sorry for coming off insensitive, that is not at all the person or nurse that I am. I realize that what you do here helps a lot of people, that is why I've come here. Again, I'm very sorry, I just genuinely know that my right arm and hand are getting worse and I have no answers for it and that is very unsettling.
 
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Hello all,
I pray that you are all doing well. I have been focusing on things other than my symptoms and fear. I know you will probably tell me to go talk to my neuro which I plan to do (he is currently out of the country). I come here because I genuinely respect all of your knowledge and feedback.

I do realize you all gave me your suggestions and opinions on my symptoms. I only come back to say that my arm continues to feel heavier and heavier from the shoulder and that my hand is not as dexterous as it once was (not to mention much more bony and less "meaty" between my thumb and pointer as opposed to my left).

I know you say you don't "feel" with this disease but my arm constantly feels like its buzzing, or is about to jump and even feels sometimes like it is jumping a bit, and is quite shaky. This can not just be anxiety isolated to one limb. Please I only ask for advice because it is not getting any better, just worse and I've gone to the gym, slept better, ate better, took the meds the doctor prescribed, stayed off google, and yet still I find this to be impossible to ignore and interfering with daily life.

Please be gentle with your words, I mean no disrespect and don't mean to be a pest.
 

affected

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Gently I will say that you are obsessing and trying to pull terminally ill people into your obsession. You won't believe us so I would think closing this thread is the kindest thing the mods can do for you now. All the best, you have no ALS symptoms.
 

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Just stop. Your posts look more like that of a Symptom Google Sleuther than they do of a registered nurse.

You know you don't have a terminal disease so why you continue to post here (while politely dismissing the advice given in return) is puzzling, at best.

There are only about 25,000 differentials left to pursue, so pick one and investigate it as aggressively as you've done with ALS. You're wasting your time here and quickly wearing out your welcome in the process.
 

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Ashley, you have something else. Not ALS. See the doc and fix it.
 
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