Strange Systemic Issues

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Futurefighter

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Back in 2019 I started getting spasms and twitches that started in just my right bicep. It would continue for the entire day, even when I woke up. It'd be days at a time. It started happening in other limbs progressively, after a few months happening in my left arm, my legs, etc.

I didn't think anything of it. Whatever, just twitches. Thousands of reasons; muscles just are tired from working out probably. Moving on to 2020 I would feel very fatigued and a lot more things started to happen... Lots of GI issues from that point on but otherwise beyond the twitches and fatigue from 2019 I became used to and just kind of ignored them. Though one thing was odd- after March 2020 I started having difficulty swallowing.

Into the summer of 2020 I developed an extremely dry mouth and dry lips... like really bad. I suffered bladder incontinence in my sleep just once- so I also ignored that as I doubt it meant anything. I never had a history of this but I assume even healthy people piss em selfs once or twice in their lives.

Continuing on, the difficulty swallowing became to a point where even water is hard. As far as I can tell its not like an allergy or strep throat or something- it is mechanically hard to swallow. I have to force a few swallows to swallow one gulp of water until it feels like it goes down- sometimes it doesn't all go down right and it more or less comes up.

By the end of 2020 I started getting issues in my hands, feeling a bit shakey sometimes, mainly the right only; everything seems worse on my right side. The dryness also continued. Sometimes my lips, mouth, throat, and eyes are so dry it is literally painful to be awake. I started to get pain in my muscles regularly for no reason; no physical exertion in a few days yet pain- not active like a spasm but as if my muscles were very stiff and taught.

The most obviously issue to me at this time, and the only one I cared about was the dryness, since it was bad. The clinic just threw me some salivia production medicine without any diagnostic as to why. Whatever- I'm alive, can work, and be a husband to my now wife (we wound up getting married in 2020)

In August 2020 I started to get neck spasms and issues. Everything else just kinda continued, progressively become worse.

In about December 2020 I started to feel my legs were weak- like I was telling them to move but they are sluggish and wobbly. I don't have the agility I did just two years ago and I also started having issues urinating- it is increasingly hard. Still not thinking anything about ALS or any kind of MND, went to a Urology clinic, with no tests besides the ole cup-urine sample. No infections or anything; but abnormally high residual urine. The doctor just said its probably prostate and gave me some odd anti-inflammatories. No improvement there though.

In January 2021 my legs started feeling very weak. By the end of this month, it is hard to balance and I do not have the power of a 26 year old man. My hands also started to develop full out tremors. I drop things frequently. I can still walk but the question is "how long until fatigue weakness" of which the duration seems to be getting shorter.

Since the end of February I also get spasms/tremors in my jaw, especially if I keep it open for a long time. My fingers and arms are also weak- my grip is diminished and I can only muster up about 26kg grip force, compared to the upper 60+ I was able to do back in 2019, even maybe the beginning of 2020. (I used to do grip training along with some other stuff... there was a fun arcade game and It was fun when I was able to get high scores of 70+)

Feelings mean relatively little I supposed, but if I can describe how I feel or interpret these mechanical difficulties:
I am slower. I am a young guy- grew up on games and stuff. It's like the feeling of "lag" in a video game when you click the mouse cursor, but your gun fires miliseconds later. That's what my hands feel like. I am telling the damn fingers to move- telling my damn hand to grip but the reaction speed is slow... the grip is weak. It's not like an old granny or a grandpa on their deathbed, but its not a 26 year old in his prime who used to do sports and esports.

I also just started to have some mechanical difficulty saying words. Like my stupid POS mouth and tongue won't move how I want it to. My lip feels almost paralyzed- its very difficult to pull my lips back fully when I move my mouth to talk. My jaw feels difficult to open fully, pushing tongue out feels tough.

I really suck at description, but thats the best way I can describe it. Will I be unable to move by tomorrow? No. I've had lots of pain, weird feelings almost like current going through my body sometimes- lots of symptoms... But hell thats life. Everyone has weird stuff all the time and it is not a terminal illness.

But on the same token the weakness and loss of mobility has hit a point where I actually noticed it- and my wife did too and poked me to go to a Neurology clinic.

My hands are my livelihood and I have now hit the point where I am -worried-.

I had an appointment with a Neurology clinic. Explained the best I could (I go to clinics in my second language) and mentioned the feeling of my legs not having power, like how I can still walk, and I can push a little bit to go faster, but my legs quickly get tired then that wobbly jello/balance is hard type thing. The doctor did not respond or really do anything about the legs or other areas, but focused on the hands. He diagnosed tremors for now but said the cause could be anything... For starters he did just a thyroid panel due to my neck issues/trouble swallowing and tremors- I really hope its that- but my yearly physical didn't have irregular Thyroid so I am guessing he will move onto another test.

He ordered an MRI for two weeks from now too- so I guess if none of that find anything he will keep going?

Does this experience of progressively losing strength/precision and having a lot of other weird issues with swallowing, dryness, etc sound like cause for concern? If so is there any advice on approaching doctors?

My countries culture tends to follow textbooks to a tee and redtape; its not unheard of for young people to die of cancer etc here because doctors deemed "you are too young to qualify for national system supported screening"

I hope I am just a nutter.
 

lgelb

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I don't think you're in any way related to walnuts.

This could all be anything or nothing, but the dry mouth and urinary retention make me think about something like Sjogren's. I don't think it's ALS or anything similar.

I would see a rheumatologist if the MRI is negative.

Best,
Laurie
 

Futurefighter

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I don't think you're in any way related to walnuts.
That gave me a good chuckle in my brain.

I think a lot of the weird systemic stuff I have is certainly not related to ALS. I probably listed up a bit too much non-pertinent information as I just rambled away.

The limb weaknesses and coordination stuff bothers me though- its a physically measurable weakness, however the doctor zoned in only on the hand tremors since it was the most obvious (and visible) issue and is looking to solve that first.

That bit kind of worries me a bit... is progressive weakness that has gradually gone from just one side, to both sides, to all four limbs, jaw, etc not cause for concern or further testing, like EMG etc?

I also don't know if its relevant but I rapidly lost 40-50 lbs from April 2020 to August 2020.... the doctors in my country said "you should be happy you are no longer fat" and didn't look into it... but given I am working from home and not all that active it did not make sense.

I mean, being overweight is not good, but uh, not making an effort but dropping a lot of weight seemed worrisome, but I just kinda shrugged and guessed I just must be healthier at the time, come to think of it.
 

lgelb

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ALS doesn't present moving everywhere like that. If your doctor thinks there is reason to suspect clinical weakness that has migrated all those places, s/he might recommend an EMG to rule out an adult-onset myopathy, but what you've described doesn't sound like that to me. The weight loss also makes it sound like something more systemic, another reason to regroup with your internist or a rheumatologist.
 
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