Could this be ALS? 25m

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Falone

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First, thank you to the ALS forums community for creating this section of the forum. I know it must be extremely frustrating to deal with people like myself who are worried about ALS and often don't have it. I also know that many of you do have this disease or support and care for people who have it. Unfortunately I have been suffering from a lot of symptoms which overlap with ALS and am becoming concerned. I feel guilty posting here but if you have the time and are willing to spare it, I would be really grateful for your opinions. Thank you.

P.S. The really 'ALSy' stuff comes about part way down but the beginning is worth reading for context.

Details: 25 years old, male, Caucasian, above average height with normal BMI.

I began having trouble with my health in April 2016 while I was taking an abnormally high dose of topical Minoxidil, applied to my face. During the month I spent taking the drug, I noticed unflattering changes to my soft tissue. My skin and muscles became doughy and I was concerned that I was looking prematurely aged. Simultaneously, I experienced numbness and apparent muscle weakness in my lower bowel, affecting my ability to pass stools. Needless to say, when I noticed these side effects, I stopped Minoxidil immediately. However, despite prompt action my soft tissue did not recover and I still have altered soft tissue and abnormal bowel sensations now, almost five years since taking the drug.

For the next two years, I noticed no other symptoms, although, on reflection, I may have had muscle fasciculations, but in August 2018 I lost the ability to burp. I had just completed a long-distance run when I had the sudden sensation of weakness, floppiness and numbness in my oesophagus, accompanied by a need to burp up gas but an inability to activate the muscles needed to do so. At this time, I also began experiencing abnormal yawning, hiccupping and microburping (although the yawn is only a kind of partial yawn and doesn’t use all the normal yawn muscles) hundreds of times a day, which I have read is suggestive of nerve damage. I developed and still suffer from severe acid reflux.

My symptoms remained static for the next few months until in November 2018 I had a bad bicycling accident. This resulted in me fracturing both my elbows and my right wrist, as well as getting whiplash on my neck, though slight pain. Recovery from this was for the first few months uneventful, however about three months after my initial injury I began getting pain, tingling and numbness, along with weakness in my arms. These attacks were sporadic, but did not seem to result in permanent weakness.

However, I did notice that I seemed to be clumsier than usual and to be dropping things more often. This problem still afflicts me. I additionally began having severe muscle spasms in my jaw. To give some sense of the power of these spasms, it felt as though my jaw was being wrenched out of its socket, although thankfully I suffered only a few of these and have had a small amount only since.

Finally, I began suffering from another round of symptoms in June 2019. The first symptom I developed during this period was swallowing trouble. Shortly before graduation, I lost the ability to swallow normally in a manner that recalled my sudden inability to burp a year earlier, with, firstly, extreme difficulty initiating the swallow reflex, and secondly, when I did eventually manage to begin swallowing, the actual movement itself was spastic with several muscles appearing either not to activate properly or to be uncoordinated.

In the days after this I experienced pain and clicking around my Adam’s Apple area, as though nerves or muscles were getting trapped and I had a strange tingling sensation and the perception of a loss of mass underneath my tongue. A muscle between my chin and my Adam’s Apple disappeared during this time and I have not had feeling or tension in it since.

In the weeks that followed these sudden swallowing difficulties, I saw several doctors. One suspected that it could be an infection, however the antibiotics he gave me failed to help. No visible abnormalities with my throat were noted (and at a later date I undertook a nasoscopy which confirmed this), suggesting that it is a neurological or muscular issue. No more treatment was offered. I was unable to eat more than yoghurt and water for this period, but in the months that followed my swallowing slightly improved.

Unfortunately, the muscles that I believe I lost when my swallowing first worsened have not returned and my swallowing, though functional, remains impaired. To the extent that it is improved it feels as though this is because other muscles have atrophied and are ‘filling in’. I have since had a neck MRI which showed no abnormalities, ruling out a bone issue.

Swallowing was not the only problem I developed during this time, as I also began suffering from muscle twitches, usually between 20 and 30 or so a day, beginning in my abs, where the twitches were especially violent and afflicted me while lying down at night, but which have over the past two years spread all over my body, including my face, arms, hands, neck and buttocks.

Most worryingly, they have been accompanied by progressive muscle weakness and spasticity, as well as what seem to be altered reflexes.

Other than my swallowing difficulties, it is difficult for me to say which muscles first started showing abnormalities. The first changes I believe I noticed were in my core, which started showing what for me was unusual weakness about a year ago – I was unable to do even very light core exercises without my core shaking uncontrollably and on occasion have difficulty sitting up and standing up straight – and my face, where I noticed twitching under my eyelids which expanded to my nose, lips, cheek and chin and weakened smile muscles.

Although, I am afraid, I cannot be specific on the timeline, I have more recently developed shoulder weakness, which often shake when I put my weight on them while lying on my side. My right shoulder was described by a physiotherapist I have recently begun seeing in a bid to improve my strength as uncommonly weak.

In the past year I have also noticed progressive weakness in my arms, particularly my elbows and muscles appear to have disappeared at my elbow making day to day tasks such as elements of cooking such as whisking and cutting food, as well as press-ups, very difficult. My wrists appear weakened too, as are my legs and knees.

In the past few months I have noticed increased difficulty going up and especially down stairs, with impaired balance. I have also experienced weakness in my lower back and have noticed reduced coordination in my fingers.

These functional changes have been accompanied by visible changes to the muscles and the limbs. On my arms, a muscle has disappeared around my elbow, leaving an indentation; on my knees, I have observed similar changes, areas of muscle apparently wasting away and leaving dents; on my forearms there are also new indentations and disproportionate muscles; on my calfs, the muscles have what to me are abnormal bulges and dents; and on my hands, the muscle between my thumb and index finger feels mushy and there is a new dent.

The final symptom I wish to raise is that, since perhaps a year ago, I have been suffering from abnormal reflexes. Essentially, my reflexes are on the one hand delayed and on the other hand exaggerated. For example, if I brush a wall, my body will, often, spastically twitch away from it as a reflex, but this will happen later than usual and the movement is more dramatic. Another example is when our family dog nudges my stomach. In this case, I will get a violent twinge in my back about a second or two after the impact.

This is not a full list of every symptom I have suffered since I first started feeling abnormal three years ago, but I think I’ve covered the most important.

Thank you again for taking the time to read my thread and for your replies. I really do appreciate it immensely.

I would be grateful to know whether this sounds like possible ALS and if not whether you have any idea what else it could be. Finally, would an abnormal EMG - which I hope to have soon via a neurologist - aligned with these symptoms suggest ALS, or is there really no meaningful overlap with ALS symptoms at all?

Thank you.
 

lgelb

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It's not as simple as an EMG is normal or not. There are specific changes that suggest ALS, others that suggest other diseases and conditions. You have the right to the report that calls these out -- or shows everything's normal. You can post it here without your details if you'd like comments.

But the answer to your questions are no, doesn't sound like ALS, and don't know what all it is but doubt it's any one overarching thing. Exaggerated reflexes can reflect anxiety, fatigue, dehydration and deconditioning, for one. A neurologist can state whether the atrophy you perceive is clinical, and likewise your baseline strength. I would ask them about screening for RLS/PLMD and maybe a sleep study in re the spasms that worsen lying down.

Best,
Laurie
 

Falone

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Thank you for your reply Igelb, and for your very kind offer to read my EMG when, as I assume I will, I ultimately get one. I know that you have commented on my case already, but in case it is useful, I have just taken some pictures which show some of my dents and muscle wasting. The light isn't great and the pictures downplay the waste but hopefully you can see it is there.
I have an appointment with a neurologist for a week tomorrow and am very scared. I know that juvenile ALS is rare but if you rule out obvious things like anxiety (which I really don't think this is) and things like dehydration then I just don't know what else this could be. With fasciculations (everyday for 2 years), visible wasting and progressive weakness all the signs seem to fit.
 

lgelb

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On the contrary, 2y of fascics point strongly to benign fasciculation syndrome (BFS). Perceiving a swallowing deficit that doesn't manifest in testing is another strong indication against ALS. But you can ask the neurologist whether s/he perceives clinical weakness and/or atrophy.
 

Clearwater AL

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Falone... thousands of word, countless lines, numerous paragraphs and finally a
picture of your hand. Have you read previous threads? I think so.

A full page of rambling self centered health anxiety.

AND... from what I read you have yet to see a Neurologist or even a doctor!

My opinion... you came here to just see what replies would generate for nothing
more than entertainment. I hope not. We don't need to hear from you again
until you see a doctor, get referred to a Neurologist, have an exam, if that
leads to an EMG... then post the summary/conclusion. Or.... come back and
tell us the doctors have assured you - you do not have ALS.

For you or anyone... I hope so.
 

Falone

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Hi All,

I hope you're well. As promised, I am writing to update this thread having just had my first consultation with a neurologist. The results were as follows.

In short: the neuro noticed abnormalities but does not think they amount to ALS, or MS. He thought I could potentially have two very rare neurological diseases and said he would not be opposed to me having tests for them, which includes an EMG that would presumably definitely rule out ALS into the bargain (would it?), but says that that is my decision. He does says getting these tests would "not be stupid" but are not definitely necessary. He left the ball in my court.

However, my physical exam did turn up abnormalities. Gratifyingly, given I've had several doctors try and clam my muscle twitches are 'all in my head', he observed both muscle twitching and tremors, in many of my muscles. However, he did not think there was obvious clinical weakness, at least not of the level he would expect from ALS. I believe he thought, although he did not explicitly say this, that deconditioning or a dietary issue could behind the changes in my muscles' appearance. He saw nothing obviously awry there, however.

My toes and/or foot did not curl when he scraped the bottom of it, which I believe is a good sign (is it? I would be grateful if someone could explain).

Unfortunately, he DID notice abnormally brisk reflexes, which I understand is a symptom of disorders like ALS. He said this was of clinical note and not normal, but he went on to say that it is not unheard of in healthy people and is not a sure fire sign of problems. It is abnormal but not ABNORMAL, if you get what I'm saying.

Interestingly, he remarked that I had signs of very poor wound healing which he has recommended I see a dermatologist about.

His final, parting thoughts were that he does not know what is causing my symptoms. He believes they are real and saw several of them (which is a relief - I'm not mental!) but said he was very confident it is not ALS or another common neurological disorder. He suggested adrenaline overproduction from asthma inhaler abuse combined with anxiety and perhaps an underlying condition, could be involved. He thought a connective tissue disorder such as Ehlers Danlos might be responsible for some of my symptoms too, but stressed he was not a specialist in that.

The only little niggling doubt I have is the muscle weakness I have (even though the neuro didn't observe it, is there, trust me), the twitching and the abnormal reflexes make that 5% of me still worry about ALS. I know this is irrational. I know it is stupid. But I am leaning towards getting the EMG just to totally rule it out and those other disorders he thought it actually could be (though unlikely).

I shall let you know if I proceed with the EMG and post my results if I do. (Also, if and when I finally get a diagnosis of something I shall return as I figure people worrying about ALS might be helped by seeing hat else their symptoms could be.) In the meantime, thank you for putting up with my rambling and for your sound advice. It is a small gesture I know but I have resolved to make a yearly donation to an ALS charity (and a few others), whether I have the condition or not. It seems the least I can do.

Thank you.
 

Clearwater AL

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“However, he did not think there was obvious clinical weakness, at least not of the
level he would expect from ALS.”

Good news. :)

“…but said he was very confident it is not ALS or another common neurological disorder.”

Really good news. :) :)

“The twitching and the abnormal reflexes make that 5% of me still worry about ALS.
I know this is irrational.”

Still concerned about 5% ? Yea, that’s being irrational. That’s like playing
seven card poker with highest card you’re betting with is a nine of diamonds
and staying to the last card. :)

“I shall let you know if I proceed with the EMG and post my results if I do. (Also, if and when I
finally get a diagnosis of something I shall return as I figure people worrying about ALS might
be helped by seeing hat else their symptoms could be.) In the meantime, thank you for putting
up with my rambling and for your sound advice.”

Thanks… until then.
 

Falone

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Update: I have just had an EMG which tested my feet, thighs, bicep muscles and hands. While I have not seen the full results yet, the neuro has said my nerves and muscles look healthy. He noticed some slight muscle twitching but that is apparently common. His diagnosis: no ALS.

What it is instead, he has said he cannot say. He suggested that some of my muscle symptoms could be related to adrenaline overproduction, in turn linked to Salbutamol abuse (I have badly managed asthma). The possibility of an acquired connective tissue disorder has been thrown around too, resulting in soft tissue looseness and overstimulated nerves.

Thank you again for all your advice and support during this process and I wish you all the best,

Will
 

Bestfriends14

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Thank you for updating the forum, Will. I, too, have asthma and if I over use my puffer, I get a racing heart and twitch like crazy. So glad it is not anything serious like ALS. Hope you get your jab soon as asthmatics fall under the category of underlying issues.

Good luck to you and please stay safe.
 

lgelb

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If your asthma is brittle, you probably use steroid inhalers as well -- these can have long-term effects in several areas, including those that could mimic an CTD. I would talk with your specialist about addressing any allergy component, if any environmental issues should be addressed in your home/workplace, and making use of newer drugs.

Fortunately, all these issues are much more treatable than ALS. All the best.
 
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