Worrying symptoms turned out to be nothing.

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Rob987

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Hi there, I'm a 24 year-old male from the UK and I've been lurking on this website for about a month and a half now, in the same way that I'm sure many people reading this will be. First off, I'd like to express my gratitude and admiration towards the users of this forum who have been affected by ALS, in particular the users selfless enough to patiently reply to a lot of anxious people posting in this area of the forum. I have been tempted to post here a number of times, but I decided to wait until after my EMG because there is clearly no other reason to do so other than to seek the same reassurance which you can get from the pinned posts, and users who have been affected by ALS have more important things to do than individually reassure people for whom the relief will only be temporary. I'd urge anyone looking for individual reassurance to read what the regulars here say time and time again - they are not professionals and nothing is a substitute for expert advice. If your symptoms are so diffuse and non-ALS-like that the regulars feel comfortable telling you to stop worrying, then you could have found it out for yourself. I'm posting here now because I think it's important to offset the threads that never reach a conclusion (clearly because they get good news and breathe a sigh of relief and forget all about their post) with threads detailing initially troubling symptoms which concluded with good news from start to finish. If you do not have clinical weakness, do not add to your neurosis by posting here before getting an EMG.

So with me, everything started when I was diagnosed with Crohn's disease in January of this year. Prior to my symptoms starting in October 2020, I was extremely active and fit, playing high level sport, with a job I was very proud of getting due to start. However, from October to January, due to the unmedicated Crohn's, I lost 15kg of body weight, could no longer participate in sport, and withdrew significantly from other things that had previously made me happy. Because of the severity I was put onto a biologic medication - a new and really quite powerful class of drug which can cause some serious side effects if not monitored, one of which is potentially causing or triggering MS. At first this didn't bother me but about 2 months into my treatment, due to my mental state and the fact that I had fewer things to fill my time, I started Googling MS and thus started the cycle of searching-checking-searching-checking. I'd like to make it clear that I am not normally anxious in any way, but this behaviour clearly made me very anxious, and before I knew it I had started twitching all over. I don't need to go into too much detail on this phase of health anxiety because if you're here because of twitching and other symptoms which don't involve muscle weakness, then you already know everything that I was experiencing. I will say that I was getting some very real symptoms - constant twitching that made it feel like my whole leg was rippling, twitches which would make my thumb/forearm jump quite violently, stiffness/awkwardness in my leg that was making it very difficult to walk, occasional cramps, perceived weakness in my right leg, tremors, and even perceived difficulty swallowing recently. I was obsessively checking my strength all the time, and I'm convinced that my difficulty walking was caused at least in part by the fact that I was so obsessed with how I was walking after reading about it online that I literally could not take one step without focusing on exactly how it felt. I'm sure a lot of people will relate to the fact that I was trying to walk DELIBERATELY, which is not how it's supposed to happen, so I felt like I'd just learned to walk and was clumsy and off-balance.

After a while I decided that I wanted to see a neurologist, and thankfully I have the financial means to be able to see one privately quickly. I saw him last week, and had my EMG and EEG earlier today. Needless to say, my neurological examination during the initial consultation, as well as the EMG and EEG today, were completely and utterly normal. "Perfect", in fact, according to the EMG specialist who carried them out. I, like countless other people who have come here, am absolutely fine ALS-wise. I am 100% sure I was displacing a lot of the stress from my Crohn's diagnosis into this, along with other things. As I said above, I was experiencing some very real symptoms, a lot of which disrupted my day-to-day activities a significant amount - it is completely possible for these kinds of symptoms to appear psychosomatically.

Most importantly, I'd like to point out that part of the reason I've been able to accept the result of this EMG is because yesterday I went to my GP and said plainly and simply to him that I believe I have a problem with health anxiety and, given the things going on in my life at the moment (Crohn's, new job with very intense hours, moving into a new house), I needed to address it proactively and aggressively to stop it spiralling out of control. I have been prescribed Fluoxetine and CBT, and I felt better immediately after leaving the appointment because I'd chosen to take the issue which, deep down, I knew had something to do with my symptoms, into my own hands. If you are reading this, and it sounds similar to your experience, please just get an EMG and, if it's clean (which it is highly likely to be, especially if you are under 30), then address your anxiety as the central issue. Quick side note: if you're avoiding an EMG because you're worried it's uncomfortable, don't. I wouldn't want to do it every day but the worst I felt during the whole procedure was at one point where the needle made me feel like I had a bad bruise on my leg which was being poked.

Again, many many thanks to all PALS, CALS, etc on this forum. I hope that this post reduces the volume of anxiety-driven posts on the forum by at least 1, hopefully many more.
 

Nikki J

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Thank you. Best of luck to you
 
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