Bulbar onset symptoms 21M

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Ronald99

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Hi all,

Thank you for giving me the opportunity to ask questions in this forum!

Over the last few weeks I have been very stressed about my health. My fear of possibly having ALS started on March 30th when my right forearm started to have this same, strange feeling of stiffness, tiredness, and on and off weird pain that I have never experienced before in my life. This feeling started in the lower half of my right leg about 3 months ago, and has not gone away for a single day. Whenever I focus on my leg, even when there is no pain, there is that feeling of stiffness or heaviness that my left (healthy) leg does not feel at all. Sometimes it feels restless as well but that is rare.

In the following days from March 30th, this right forearm feeling spread to my tricep/bicep area, and then into my shoulder, and eventually the right side of my chest, which felt like I had just done a chest workout the day before and was recovering from muscle soreness, when I had done nothing involving my chest muscles out of the ordinary any time recently. My shoulder would also have some minor (sharp) pain while washing my hair in the shower or reaching in certain positions, which went on and off. The idea that something is spreading alongside the right side of my body could not be ignored.

The scariest part for me is my swallowing problems. In 2015, I was visiting my extended family in another country when I started choking on water; I told them that this was not the first time and that I had choked on my spit before. I do not know exactly when this started, but it has been a problem for many years now, which seems to be getting worse and worse. In the past few years, I have choked on liquids (spit, water, tea, in the shower, from the juice from biting an apple, etc) dozens of times, leaving me gasping for air with what feels like a closed throat for 10-30s while it slowly opens back up from each gasp. It’s scary and leaves me borderline shaking for some minutes after. I started having new swallowing problems in September of last year, when I could not initiate swallowing food. I would have food in my mouth and not be able to tell my body to swallow it, despite it already being chewed and ready to go. I’ve read that with bulbar onset, swallowing issues may get better for some period of time? This initiation problem occurred a few times from September to November (with food), and since then my biggest problems have been with drinking liquids. On my birthday, (in these same months) my friends ordered me a shot of alcohol, which I could not consume. My friend first showed me how to do it, leaning his head back and easily consuming the liquid from the glass in one swallow. I tried, but could not even contract my throat to swallow it when facing my head up, nor could I consume a small little shot glass of liquid in one swallow. I then realised how bad my swallowing problems were. As far as how small my throat is, it takes me about 6 swallows to swallow a mouthful of water, which people that I’ve asked could all do in 1 or 2 max. Not sure how long my throat has been tight for or how quickly it has been getting tighter, although it feels tighter than ever and it is a struggle to eat and especially drink anything. I have limited myself to water; other liquids seem to give me an even worse choking hazard every time they are in my mouth, which is a very annoying feeling. Every time I want to drink something or even swallow my spit, I have to concentrate on it otherwise I risk choking. Sometimes it is so difficult to swallow the liquids without feeling like I am going to choke from how tight it is and hard to swallow, while other times it is rather easy but I still have to focus on it. I also have a minor problem with stuttering but that is not getting worse quickly and sometimes I mispronounce certain words with a slur or some other mispronunciation but then I can repeat them correctly without a problem. I am worried that I may have bulbar onset because of the combination of my swallowing problems (which started first and a long time ago, and appearing to get progressively worse recently) with the right side of my body having these strange issues in the last few months.

I went to see my family doctor towards the end of 2020 and did some blood work, all came back normal. I was busy with school at the time and didn’t think anything too seriously of my swallowing problems, so I did not follow up with my doctor for a while. Then the right side problems started, so I immediately went to the doctor when my right forearm felt the same feeling as my lower right leg. More blood tests later, still nothing out of the ordinary. I have went to consult a Physiotherapist and Chiropractor, both of whom told me not to worry about ALS and that I will be fine. PT told me my upper back is very tight which can cause a tight throat, and problems along the right side of my body, which was slightly reassuring although I feel as if my swallowing issues are a bit too serious to be explained by this. Chiropractor said my hip was very tight from too much sitting and likely caused me to overcompensate with the lower part of my legs whenever I would walk or sit which could explain that. As far as his explanation for my arm, he said something about my rib being exposed and my chest being very tight, which when he pinched that area in my chest it did send a shock down to my right finger which could explain the right arm problems. He did not comment on my swallowing problems because he said he’s not an expert, although he told me that I’m not limited to just one problem and that it’s likely that my swallowing, right leg, and right arm, are completely unrelated problems, which I pray for. The chiropractor also did some reflex and strength assessments, said that I am healthy except my right leg has noticeably worse balance than my left, which freaks me out. I noticed my balance was a bit worse on my right leg than my left when I was going to the gym back in December and January and stretching by standing on one leg and pulling the other leg back to stretch my quad (there are better alternatives for this stretch I have since learned) but the balance appears to have gotten substantially worse in the last few months. I can still balance on the leg with my eyes open, although it is very shaky and I can only last a few seconds if I close my eyes, whereas my left leg can balance for 30 seconds eyes closed without a problem. I have no problems walking, running, on my heels, toes, anything with my hands, etc. He has given me stretches to do for now to work on my hip and chest, and plans to work on my stabilisation next time I see him.

I will also add that I have been stressed in mid April from final exams, which is also when my muscle twitching was out of control and body-wide. I will attribute this to a lack of proper nutrition and dehydration since I have bad exam-anxiety and the twitching was body-wide including on the left side of my face under my cheek and on the left side of my body including back. I still get twitches often in my right leg and rarely in my right arm. The twitches were most common in my calf and the pain was most common around my shin muscle on the right side of my right lower leg. Now, the twitches are most common just above my knee, and I feel as if my right upper leg has been starting to get tired as well. I have been going on daily walks of about 2 hours average to stay somewhat active. I have not played any intense sports since I last did skiing and swimming in Jan, because of this lower leg feeling which I thought would go away in a few days when it first started but now it has been months and my concerns are elevated. I would say that my stress is relatively low throughout the days, but gets elevated whenever I have twitches or minor pains on the right side of my body or when I have to eat/drink and I struggle to do so.

I am going to a gastroenterologist in 2 weeks and they are going to put some camera in me to check my throat while I’m asleep (I think). I am also still waiting to hear from a neurologist since my doctor referred me but I am not sure about when this appointment will be.

Sorry for the long post, I appreciate you reading more than you will ever know. Thank you so much in advance for any replies. God bless you all.
 

ShiftKicker

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Hi there- please read here first: Read Before Posting. It provides a fair amount of information to spare the folk here having to explain about twitching, weird feelings, etc. Swallowing issues are caused by so many things (see the link!) and ALS is at the very bottom of it.

It sounds like you've been to see a couple professionals who have assessed you and told you what issues to work on. You definitely can keep working on the the exercises and stretches your physio has recommended while you wait to see the gastro. The folk here really can't tell you what may be wrong, but your age, the spread of symptoms, your sensory issues, pain, the fact your physio found no worrying neurological signs, etc, all point away from ALS.

Please understand this forum can't take the place of medical professionals. You're on the right track and are obviously under the care of a doctor who is providing referrals to specialists. Check in with your doctor if you're struggling with anxiety- it can definitely magnify twitching, tension, swallowing issues, etc.

Please let us know how it goes with the gastro- all the best.
 

Ronald99

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Thanks for the reply! I have read the post and it is relieving to see that many of my symptoms point away from ALS. You mentioned the spread of my symptoms, this is something that has worried me a lot. I’m assuming that in my case it points away from ALS because of my multiple body parts with strange problems but are all still fully functioning (except for my swallowing)?

I also had my endoscopy this morning, which the doctor told me that my oesophagus looks healthy and does not know what is causing my swallowing problems. His guess is an imbalance or “lack of coordination” somewhere in the process, and mentioned the nerves and muscles involved in it. Not sure if this is good or bad news for me but at least that’s one less possible cause ruled out.

As far as my symptoms go, they have been more or less the same except I noticed that my right leg fatigues on walks pretty quickly (only sometimes) and the stretches I’ve been doing from PT haven’t seemed to help my symptoms (maybe some temporary relief at best), but I’m going to keep at it, can’t expect a quick fix. Two of my fingers on my right hand have minor tremors (or twitches in my forearm that cause it, I’m not sure) and another muscle on the left side of my face started to twitch a couple days ago, to the left of my face by the end of my jaw. Not too worried about these thanks to the sticky post.

Got lucky with my neurology appointment which was supposed to be next month but somebody cancelled and I am now going tomorrow.
Hoping that I will get some valuable answers to end some of this uncertainty.

Thanks for reading, I hope you’re all doing well and I welcome any replies!
 

affected

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Let us know the result of the neurology appointment for sure. Fatigue and twitches are not really indicative of ALS as you already read in the post you were directed to. Good luck.
 

Ronald99

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Good news! Neurologist did a full-body assessment for strength, balance and reflexes. Everything is fully functioning and healthy. When testing my balance, I showed them my balance on my right leg compared to my left (they did not ask me to do this, I was just curious, they told me my balance was good based on the drunk test) and apparently my balance on my left leg (the one I have no problems with) is just exceptionally good, while my right is considered normal (not sure how long my balance on both legs has not been the same, maybe always been like this).

As far as my swallowing problems go, they do not know what could be causing it and I told them about my healthy endoscopy as well. They said that because my swallowing issues have been going on for a long time without speech problems, it makes it even more atypical that it could be ALS (which I brought up at some point as a question). They mentioned NCS/EMG and if I wanted to do them but said they see no worrying reason to do it, so instead they gave me some additional specific bloodwork and I am going to have another appointment in three months to see if anything has changed.

Very happy with the news, but still searching for causes and answers to my problems. At least I can focus my energy on another path for now. They mentioned speech and language therapy (maybe this could help me exercise some swallowing muscles?) and some barium swallowing tests as potential next steps which I will look into after this next blood test.

Thanks for reading and allowing me to post on this forum, I have learned so much in the last few weeks. Sending my love and prayers to everyone here.
 

Nikki J

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Congratulations. Thank you for sharing. Yes speech therapy will likely be helpful

have a long and happy life
 

Bestfriends14

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Congrats, what fantastic news!
 
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