Cubanborn87

Hi, maybe a few of you recognize my username. I have been on here very active, even though in the last few months I have taken a break. I think last time I posted was in late March. I tried to post a few weeks ago after my follow up with my neurologist, but the board was offline and then I went out of the country for 2 weeks. For those of you that don't remember me or haven't seen me post before. I have had muscle twitching for a little bit over 2 years now. I had a clean EMG back in February, I keep thinking I have atrophy throughout the left side of my body and ever since November of last year when a bunch of new symptoms showed up, It has been very tough for me. That's when my tingling and numbness started, even though most of that has gone away by now. So, 4 weeks ago I had my follow up with my Neurologist. You guys know how I have been second guessing him a lot, because a lot of the stuff that he tells me does not add up to me. I showed him my hand where my veins pop out more and how my wrist bone is slightly more profound than my right hand I also showed him the clicking on my left thumb. He did not say much about that. Honestly, this appointment was a disaster for me. you guys know how I have been convinced that I have ALS since last November and I still have no answers. Anyways, then I showed him my calf and how one I thought was smaller than the other he did not say anything about that either. But, then I did this test in front of him. I told him to get behind me and to focus on my calf and compare one to the other. I got on my tip toes that way the calf would raise and stick out and I asked him. Do you see the difference? He said well one looks a little stronger than the other lol whatever that means. Then he says, people that have ALS don't pass the EMG. You passed it, I told him that I was shocked when I passed it. Then he says if you had ALS you would have to be in very bad shape now. Meaning when my twitching started 2 years ago. I notice how he no longer says that he is 99% sure I don't have ALS, like he told me on my first visit. Now is almost like he is second guessing himself. I just think he might be a bit inexperienced. So we finally make it to the test and my strength is still normal. Nothing shows up on my strength test and then surprise. I have hyper reflexes all of a sudden. I told him well that wasn't the case last time around, and he says yeah but there has never been a difference between one leg vs the other. Is that how hype-reflexes work? According to him it would only show on the problem side, ummmm, i really don't know about that. I also told him about the involuntary jerks that I get during the day and how that is new and it's really worrying me. He recommended an MRI, which is scheduled for this Saturday. So that is next, he also said let's see how everything progresses and we might do a second EMG this fall. Now, my friend sent me an article this morning about a Doctor that thought he had ALS, but did not. My friend was trying to make me feel better, but there is a reason why I don't do research anymore and don't look up ALS anymore. It never works in a positive way. The article covered various aspects and told the story of this Doctor that thought he had ALS, but did not. But in the article he mentioned how when he was really in the hole. He read this post by this lady about her husband and how he kept feeling weaker and weaker. He passed the EMG but then 6 months later failed it and it was confirmed that he had ALS. I couldn't help but see myself in that guy. I am so hopeless now, at least the prozac is working and I am able to function normally unlike back in the winter when I couldn't even sleep. At this point I have lost all hope, I will take the MRI this Saturday, which I am not worried about and then wait it out and wait for my 3rd appointment in September. It's funny how he always wants to see me 3 months later but then I go to the secretary and tells me they are booked for 5 months lol Just great. I guess the second EMG is crucial for me at this point, but I have to wait until then. I know a diagnosis is a curse and I should not be seeking it. But at this point it has been a long journey with no answers and things are not improving by any means. I wonder how often the EMG false negative happens, in the story about how he had to take a second one 6 months later. Does that happen often? I thought EMG is supposed to be pretty accurate, even though of course is not perfect. Nothing is. But I find it puzzling how I always read about people getting a second EMG 6 months later.

My gastroenterologist told me that they only get concerned if your stool is black (tar like) or has blood. Also I get the pencil thin ones all the time. I remmeber googling it and seeing how some people say that a sign of cancer even though my doctor told me that was an old belief, but not a popular one anymore in modern medicine. Anyways I did a colonoscopy and it came back clean. So I wouldn't worry. I used to worry because my stools were never light brown. They used to be dark brown or maroon. Which made me believe there was some internal bleeding. But that wasn't the case.

I don't get it now on the left side of my throat when I swallow there is this click that happens. And if i put my finger on it you can feel it really easily . This is right under where that thing on my tongue is 😭😭😭

Ok, I am going to try. I guess inwktn be sure until I shownotntonky Neurologist. But I'll try to keep it out of my mind until then.

No, I do not see it.

I had been telling you guys that for the last 4-6 weeks my left foot was feeling super skinny. The shoe would always feel loose no matter what shoe it would put on. This is the same leg that has had the tingling for about 5-6 months now. I just took this picture and it's truly concerning

Thanks guys, I will definitely have to do something about it. To me I am still convinced that I have atrophy , I am going to have to wait until I see the neurologist and go from there. The Prozac is definitely helping with the anxiety, but I am still convinced I have ALS. I can't believe everyone is telling me they don't see it in the pictures, because to me it's clear as day. Even my foot feels super skinny, my shoe is super lose on it

Thanks, I appreciate it

Thanks for the feedback guys, I don't know I guess I am going crazy with this. I am seeing atrophy all over but everyone including my friends and family tell me otherwise. I was doing well for a little bit, but I am still comparing both sides all the time.

The reason I was asking it's because my anxiety caused me to lose 10 lbs in 5 weeks without even trying then I started eating like crazy to gain it back and couldn't and it wasn't until my anxiety came down that I slowly gained all the weight back I really thought that it was atrophy and muscle waste showing up on the weight scale as I was losing muscle but it was anxiety. The other thing is I was eating Ankit during that time as well, and I was still losing weight

Have you had anxiety lately ?

I posted pics of the left side and the right side for comparison purposes.

As a lot of you guys know I have been dealing with a lot with my ALS phobia for the last 5-6 months. I have had twitching all over my body for 2 years now and since November I have been feeling a lot of different symtoms that are very worrisome. Ever since all this started I have noticed that my foot is twitching 24/7 and the areas where o think the atrophy is taking place are twitching a lot more than the right side of my body. Here are a few pics comparing the left side to the right side. On my left leg you can clearly see it , the same with my left hand where the ligaments stick out a lot more including my wrist bone and the muscle right under my pinky finger. I don't understand I had an EMG done a month and a half ago and I passed it. All these areas were tested. I thought it was supposed to be the gold standard , so what was missed? I feel so hopeless now, hopefully atrophy doesn't mean ALS and it could be some other type of condition. But I doubt it. There is also twitching in the problem areas non stop. I don't see my Neurologist for another 5 weeks. But I don't feel confident about this at all. https://ibb.co/DpfDYbG https://ibb.co/C0YQxh8 https://ibb.co/G5NHm3W https://ibb.co/RyX0RJ2 https://ibb.co/1rBq3Pm https://ibb.co/TcrRHV0 https://ibb.co/FBG5FJK https://ibb.co/3hC8mQv https://ibb.co/jrPhjbP https://ibb.co/vZrJ8LF

Thank You , that was very insightful. I am definitely not failing, I can still do a out everything with that thumb. The only thing that I noticed is when I type with both thumbs on my phone . The left one which is a little slower than my right one, is not as fluid. They did test a bunch of muscle groups and they did test exactly where all my problem areas are, so that gives me a little bit of a relief. They actually pinched me exactly by that thumb , which is an area that I have been looking at for a while now. They also tested where my skinny foot is and my leg. Which is exactly what has made me so confused lately. They have obviously tested all these areas, and this would have been 2 years after my symtoms started. So you would have thought that if something was wrong it would show up on the test. I am trying to convince myself to just trust the EMG, but unfortunately until I see my doctor in 6 weeks I don't think I'll be completely at ease.

Yeah that is it, that's great. That's a tough position to play.