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trysmiling

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Hello, I hope you are well or as well as possible.

Thank you for checking this thread and thank you for making this section of the forum. It must be very difficult for some members. Your patience for those of us with questions is greatly appreciated.

I've refrained from ALS symptom-checking on a message board like this for several months now in order to see how I progressed over time. However, some symptoms have gotten worse and some new ones have arisen and that's why I'm here now.

I have read the PLEASE READ FIRST section of this board.

Some symptoms I describe do not fit regular (or any) ALS presentation. I'm simply trying to give you a full picture of what has transpired to me in the past six months in case it rings any bells, even with something non-ALS related.

35/m currently being seen regularly by a neurologist (since November 2018 ) at a hospital in Japan where I live.

2018

Mid-Sept:
Began having sleep-onset hypnic jerks one month after a tonsillectomy. Very disturbing. Was put on Etizolam.

Mid-Nov:
Slight tremor developed in right pinky finger.

Early December:
Hypnic jerks diminished and disappeared after my soft palate (which dropped after surgery) expanded.

Mid-Dec:
I developed a thrombosed external hemorrhoid from a night being sick on the toilet. I've had hemorrhoids but this was extraordinarily painful. Two days later the hemorrhoid was surgically cut out in an out-patient procedure. This was a success. However, while waiting for this procedure I used the restroom and felt a sharp pain in my urethra.

The next day I felt a 'unsatisfied' feeling upon voiding. Saw a urologist, had urinalysis, was told everything was fine.

Late-Dec:
The tremor persisted and seemed to spread to my left fingers as well.

First sign of either potential weakness or tremor on my arm was while riding a subway and holding a strap. I rested my head on my inner elbow as I normally do in the subway and my arm started shaking. I cannot identify whether this was weakness or postural tremor.

The UTI-like symptoms continued with my symptoms being frequency and urgency (no incontinence). I saw a urologist in the US during holiday who DXd prostatitis and gave me a week of antibiotics.

The tremor persisted in my fingers and now hands.

The UTI-like symptoms vanished on Dec 31st.

2019

January
The UTI-like symptoms returned in mid January. Clean urinalysis. Cystoscopy revealed normal bladder.

Tremor moved into my arm. Neurologist Rx'd Clonopin. Did not help.

Feb

Unintentional weight loss. Noticed thinning in my wrists. Fasics in thenar eminence that went away and seemed negligible.

Neurologist suggested possible 'essential tremor' and Rx'd Arotinolol which is like propranolol for the tremor. It's 'okay' but tremor is still present and becoming more prominent in finger/hands.

I began yoga for urinary urgency/frequency symptoms to try and stretch pelvic floor. I discover during this that my arms and legs tremble fiercely during normal stretches.

I noticed that my arms also tremble when supporting my body weight for push-ups, something that they did not do unless fatigued. (I lifted weights and ran regularly until the UTI symptoms began) I still do not know if this is the tremor or signs of increasing weakness.

Mar:
Hypnic jerks returned. Getting poor sleep without medication.

Currently on a number of meds for urinary symptoms. Some days it's hard to walk across a room without running for the toilet, some days it's not, but I almost always have an urge to void.

In addition to the unintentional weight loss, I noticed loss of muscle mass. I have gone through periods without weight lifting or jogging but I've never seen this much (or this quick) loss of muscle mass in my body. Regions are:

-Left and right brachialis and inner elbow
-Left tricep which appears to have largely vanished.
-Left and right muscles beside my kneecaps on the outside. I can feel tendons which my wife describes as 'unusual' for me.
-Left and right pectoral muscles.

(Note: The difference between left and right arm sizes is visible and have been noted not only by myself but also my gym owner and parents.)

The loss of muscle and being unable to define tremor vs muscle fatigue/weakness is what is giving me ALS-related concerns. I have read accounts of pALS where muscle weakness was a slow progression. And then I've read accounts where muscles simply ceased to function. Obviously mine have not simply ceased to function.

-I can still do 40 push-ups.
-I have a normal grip strength in my dominant right hand but my left is a bit lower than normal (10%) than my right.
-I do not feel fatigued.

However, when I take on certain poses or positions, my arms, legs or hands shake severely and given that I was fairly muscular, I simply don't know whether ALS would rob my of those functions slowly or at once. From my understanding, seeing it act on multiple limbs at once is unusual for ALS, but I've also read cases where both arms were affected at once.

I'd also like to mention that I have fasiculations in my calves (which I understand are usually harmless) but also in my upper arms. I'm willing to accept that they may be stress-induced, however, given the state of my left arm I'm concerned.

I've not yet discussed the muscle loss with my neurologist but I will be doing that ASAP.

(While the bladder symptoms don't seem to occur in ALS I wanted bring them up just in case they've been recognized by someone here in a related illness.)

The tldr is that along with the concern over muscle loss, I'm unable to attribute my shaking during muscle strain to weakness or tremor so I'd like your opinion on that given the number of limbs involved and my timeline.

Thank you so much for reading. I am more than happy to clarify any above statement or provide more information. You're an amazing group for setting up this board as a place to exchange valuable information.
 
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Nikki J

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What does your neurologist say? What does your clinical exam show?
 

trysmiling

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What does your neurologist say? What does your clinical exam show?
Thank you for your reply Nikki.

Neurologist has said, "Looks like ET but the presentation is odd so hard to say at this point, especially with the other symptoms."

Brain MRI revealed no lesions so he ruled out MS but remains open to it being other possibilities. I'm having a spine MRI the end of this month. I don't distrust him, but it's a fairly open-ended statement at this point.

He's not aware of the muscle loss yet.

I'm mostly wondering what the weakness progression timeline can be like.

The PLEASE READ THIS suggests that muscles simply cease to work but but some first-person PALS stories I've read suggested a pattern of weakening before loss of use which is why I'm in a bit of a quandary.
 

KarenNWendyn

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Tremors would not be expected in ALS. Bladder issues would also not be expected, except perhaps bladder spasms, but you mentioned the bladder problem got better for a while, which is not consistent with ALS. Hypnic jerks also not ALS.

So really, we’re talking about a possible loss of muscle mass. Yet you can still do 40 push-ups and have normal grip strength (except left hand grip 10% less than right, but maybe that’s what it has always been?).

You have not described muscle function failure, which is the hallmark of ALS.

So your presentation would be extremely atypical for ALS.

Since you are already under the care of a neurologist, I would suggest you tell them you’re concerned about what you perceive to be reduced muscle mass, and see what they say. Let the doctor do his or her exam. Chances are it will point in some other direction.

To answer your question about time course of weakness in ALS — Remember, it’s not about feeling weak; it’s about no longer being able to do certain functions. When I realized there was something abnormal about my gait, I found I could stand on the toes of my right foot but not my left. A few months later, I could not stand on the toes of either foot. There was no tremor or discomfort or feeling weak. Rate and sequence of functional loss in ALS differs from person to person.
 

trysmiling

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Thank you for your reply. I strongly agree with you that this would certainly be an atypical presentation.

I saw my neurologist this morning and he performed a number of physical and reflex exams while reviewing my MRI and x-rays.

He said that while he doesn't think it is typical presentation for a neurodegenerative disease, he can't rule that out without giving it some time and brought up ALS as one possibility.

Reasoning for his uncertainty is that I originally was quite strong b/c of lifting weights and running. He said it's somewhat hard to get an accurate gauge on weakness for someone like myself.

While I wait I will attempt to do some strength training and see if there's an improvement in muscle mass.

Thank you for the information regarding rate of progression. I have not noticed failure of any particular motor function although I am finding difficulty standing on my toes and feel shaky walking down stairs.

Any final advice at this time would be humbly accepted.

As this is an ongoing process I would request that the thread stay open if possible because:

1. I don't want to make multiple threads.
2. Farther down the line I'd like to update this to reflect a diagnostic outcome.

I will not abuse the thread, post frequently, etc. but having the option to post here in the future would be great if possible. Thank you.
 

lgelb

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The thread will close unless you post in it at frequent intervals. We don't control that.

I will only point out that benzodiazepines, which you seem to be going on and off of, can cause or exacerbate voiding difficulty, and the beta blocker can cause weakness. To go from someone who has been working out, to someone who takes both currently(?) could in turn affect shaking/muscle mass from a fall-off in activity.

Has any imaging been done of your prostate?

As Karen points out, ALS seems very far down on the list.

Best,
Laurie
 

trysmiling

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Thank you for your reply.

Re: thread activity, understood. I will keep that in mind.

Regarding the benzo alpha/beta-blocker:
Just to clarify a bit, I was off of the benzo for about 3 weeks when the voiding issue started and the alpha/beta-blocker regimen didn't start until roughly 1.5 months after the issue began.

The proximity of those symptoms are so close to the hemorrhoid that I'd really like to attribute it to either a pelvic floor or nerve issue that that pain initiated but that's another topic. Thank you for even addressing the issue here. I will add your comments to my notes.
 
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Clearwater AL

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Trysmiling, you’re about to hear from a member who has often been accused
of being too blunt. Often being blunt brings order.

Here goes… as you have written, apparently from a diary you’ve kept or
you have an exceptional memory.

“Some symptoms I describe do not fit regular (or any) ALS presentation. I'm simply trying to give you a full picture of what has transpired to me in the past six months in case it rings any bells, even with something non-ALS related.”

“Some symptoms I describe do not fit regular (or any) ALS presentation."

“I have read the PLEASE READ FIRST section of this board.”

*Really??

"While the bladder symptoms don't seem to occur in ALS I wanted bring them up just in case they've been recognized by someone here in a related illness."

*Then…

“I developed a thrombosed external hemorrhoid from a night being sick on the toilet. I've had hemorrhoids but this was extraordinarily painful. Two days later the hemorrhoid was surgically cut out in an out-patient procedure. This was a success. However, while waiting for this procedure I used the restroom and felt a sharp pain in my urethra.

*But…

“The next day I felt a 'unsatisfied' feeling upon voiding. Saw a urologist, had urinalysis, was told everything was fine.”

*More…

“The UTI-like symptoms continued with my symptoms being frequency and urgency (no incontinence). I saw a urologist in the US during holiday who DXd prostatitis and gave me a week of antibiotics.”

*Again…

“Currently on a number of meds for urinary symptoms. Some days it's hard to walk across a room without running for the toilet, some days it's not, but I almost always have an urge to void.”

*Last sentence of your last reply

“The proximity of those symptoms are so close to the hemorrhoid that I'd really like to attribute it to either a pelvic floor or nerve issue that that pain initiated but that's another topic."

*Finally…

“I will not abuse the thread, post frequently, etc. but having the option to post here in the future would be great if possible. Thank you.”

*I won’t apologize… I feel more than half of your 1,000 plus word 19 paragraph opening Thread was abusive to this Forum after you yourself wrote that you read the "Read First...'

*I hope your future replies stay to the concerns of ALS.

(Note to all… what used to be called “Stickies” has been renamed “Important.”)
 
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lgelb

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Indeed, a pelvic injury, infection or clot are all possibilities. My point was that by taking sedating drugs that can weaken muscles, any difficulty in urinating can get worse.

Pain and poor sleep can also relate to tremor.

Al and all, please keep in mind that long responses can be PM'd. Not everything has to be posted. Extensive quoting, whether initiated by a new poster or an experienced one, still requires the reader to scroll extensively, as we try to avoid.
 

Clearwater AL

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Laurie, may I remind you this is a Forum. It was my opinion. I’m sure
many others probably agree but won’t post because of fear of becoming
in disfavor with the Mods and being corrected in and of their opinion.

To be honest… I wondered if you have gotten your medical degree or
maybe you’re college professor. You reply to practically every DIHALS
Thread.

I realize you have been a member since 2009 and apparently you have
dedicated yourself to this Forum for 10 years full time.

No, if I have an opinion I’m are not going to send it in a PM to you or other
Mods so it goes into silent world.

And… don’t dress down my reply for extensive quoting, whether initiated by a
new poster or an experienced one, still requires the reader to scroll extensively,
as we try to avoid. The posters sure do!

Again, I hope future replies from Trysmiling pertain to ALS concerns.

If you find my replies are not fitting within this Forum structure I'd suggest you
take it up with David. He has my Email address.
 
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trysmiling

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Igelb,
Thank you very much, I've added that to my notes.
I wanted to edit my first response to you but couldn't find the 'Edit Post' option so I refrained from posting to avoid a double post. To answer your inquiry from above, yes, I've had a number of ultrasounds as well as two pelvic CT scans and the prostate has always come up 'normal'.

ShiftKicker,
Thank you for the edit. I will refrain from quotes.

Al,
Never a bad thing to be blunt! It's a great way to be productive. I'm grateful for your honesty.
What I wrote is a truncated version of my narrative that I keep updated to send to doctors overseas.

Please note in the above post where I mentioned that my neurologist brought up yesterday that -specifically- ALS is one possibility. This is significantly different from the many individuals who are told, "You're probably overthinking it," or, "It doesn't look like ALS." by their doctors.

The narrative was presented so that readers may have a full view of the issues affecting me at this time. I understand it is lengthy but it's better to get the information out at once rather than a back and forth of, "Have you checked this? Have you checked that? etc."

Actually, I was specifically told to present information about myself in this fashion by my doctor to whom I originally gave only partial information. Down the line he chided me for not providing enough detailed information at the start.

It's also why I specifically bolded text relating specifically to my concerns about muscle weakness. The latter part of the narrative deals specifically with muscle-related issues that have recently stacked on top of the many other dubious symptoms which is why I wanted to come to this community. Are all symptoms ALS-related? No. But having the full picture does not hurt and given even my neurologist's statement, it doesn't seem like I'm off base in at least pursuing this line of thought.

Anyway, those are the reasons for how/why my post was developed. I apologize for offending you.
 

lgelb

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I meant that you could PM trysmiling, Al, not the mods. Or actually, in his case, vm since he won't have PM yet.

In other words, when you want/need to quote a lot of text, you could do it off line with the person you want to make aware.

I am not sure how my role in the forums fits in when I was simply restating a longstanding forum policy (don't quote a lot of text), but no, I don't do it full time (!) As for my background, it is summed up in my profile.
 
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