Strange symptoms.

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Olitodd89

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First of all I want to say thank you for taking the time to read my post and thank you for all that this forum does to educate and help those struggling with ALS.

I have also read the forum stickies with all the info.

I am 33 year old man, with no history of ALS in my family and one person who had MS.

Like most of the undiagnosed on here I have been overcome with anxiety/fear/depression for the past 2 months thinking I might have ALS:

-It started with a weird nerve tingling in my right groin area, then came back as a stiffness in my right calf and right arm, I got an appointment with a doctor, he ordered a full spectrum blood test, everything came back normal - no thyroid issues, vitamin deficiencies, etc.

-Went to see another doctor, tested reflexes, everything seemed normal as well

-Since then I’ve been experiencing intermittent tongue issues - numb tingling at the end, and my “s” sounds weird, and sometimes feels like i stumble over my words, tongue feels dry and “big” in my mouth sometimes, and this weird feeling when I open my mouth sometimes like my
Jaws are more stuck together, like a plunger, like my skull feels more gravity pushing together , weird I know, other days it feels tired/strained, like I’ve been trying to stick my tongue out for hours or something, also have felt a dry/lump feeling in my throat, sometimes it feels like I have issues swallowing, I don’t choke on food or can’t chew it or anything (maybe that’s all in my head as I of course have this overwhelming anxiety/fear now thanks to Dr. google).

-Right arm now feels heavy, tired, as if I’ve been holding it out straight in front of my for hours, it’s not that I can’t do anything with it, it’s just that I notice it more now, and even holding my iPhone in my right hand/arm feels heavier compared to my left,

-Bottom of right foot now feels tender, and twitching intermittently on one/inner side, sometimes feels weird walking on it, like it feels more boney or something like I can feel my heel more, no dragging or flopping though, and I haven’t tripped or fallen over. My wife tried massaging the bottom of my right foot and it was so sensitive like every nerve ending was alive and I had lots of knots.

-Right leg feels heavy and stiff alot too, sometimes sitting in an upright position feels like my right leg starts to get tired quickly inside. My wife also massages my right leg and I have some nasty knots, I was yelping in pain.

-for a while it felt like my nerves are always on, and sometimes like my right arm and leg have fallen asleep, sometimes feels like an internal tremor or shakiness, but not visible, tingling and numbness in toes, fingertips, raw/tender feeling in palms of hands, sweaty hands and feet, and like I am more aware of my toes and fingers, right finger fingers feels like it rests/sometimes on middle finger, I can still move and use all my fingers and toes, just a weird feeling!.

-Saw another doctor and they ordered an appt. with a neurologist - but I am in Canada so it probably won’t be for several months.

I want to summarize by saying, nothing has failed. I haven’t lost weight, still eating the same. I am not slurring my words, my friends and family haven’t said “your speech sounds different”, I haven’t tripped or fallen, I can still walk, walk on my toes, walk on my heels, do calf raises, point my toes, lift things, open and button things, I don’t have over-product of saliva, the weirdest and most worrisome symptoms for me are the dry/heavy/stiff/tingling/sometimes numb tongue feeling and sometimes lump in throat/scratchy/sore throat/sometimes like throat is pulsating feeling and the stiffness in my leg and tenderness in my foot.

- I was out of shape, very thin, so trying to exercise again and stretch and my partner helps to massage, and I am able to do squats, pushups, went for a run, but had to stop a lot as I am out of shape and it stills feels weird on my right foot.

My apologies, I know I have said a lot and thrown a lot of symptoms out there, but just wanted to get your folks educated opinion, even though I know you are not doctors and cannot diagnose.

Thank you for your time, I appreciate you taking the time to read and answer.
 
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lgelb

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I don't read anything worrisome as regards ALS, but would follow up with your GP as you await a neurology appointment. When I read all the problems you have had on the R side, and that you are out of shape, I wonder about your positioning in bed and elsewhere-- could be time to audit your mattress and pillow, for starters. You acknowledge a rough couple of months, which can affect sleep and magnify everything, including stiff jaws and dry mouth. Hydration and a dry mouth spray/sugarless cough drop can be starting points. If your jaw pops or feels difficult to move, a dentist can assess you for a night guard.

I would also see a qualified massage therapist to try to make more of a dent in the knots/weird feelings and get more thoughts.

Best,
Laurie
 

Olitodd89

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Thanks Laurie, I really appreciate you taking the time to answer.

I’ll definitely look into your suggestions- definitely weren’t things that I had thought of!
 

Olitodd89

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So just an update:

1. I have an EMG booked for April 26th.

2. I won't be able to see a neurologist for 9-12 months - best case. I had to reach out to 5 different doctors just to get a referral for an EMG, i guess the neuro doesn't do it here in Canada but a doctor/technician?

3. I am over 3 months now from the start of my symptoms, again nothing has failed, but I am feeling more weak. Somedays it feels like something is stuck in my throat, and I need to swallow more to get rid of it, sometimes it like a sore, scratchy, dry feeling. I have no issue eating or drinking liquids though, so maybe it's more anxiety induced?

4. Recently it's felt like I can feel my bones more (if that makes sense). I haven't noticed any muscle wasting or atrophy, haven't lost weight, but sometimes it feels painful to rest my arms on a table, or even sit on a chair for my butt, its like all I can feel is the boneyness of my limbs, even walking barefoot is hard, walking in shoes is fine. Even the palm of hands it feels painful sometimes to hold things or pick them up, but my strength for the most part feels the same.

5. The more I think about my symptoms I am thinking it might be more related to peripheral neuropathy, from the studies I have read, it seems it could have to do with long haul covid, I know I had covid a couple times last year.

6. My only worry with neuropathy, is that there is still muscle wasting - from what i've read, so I am worried that if I wait a year to see a neuro, it could get worse.

7. I am also wondering if it is neuropathy, why would it be affecting my tongue and throat? I have no slurred speech and everything, but sometimes it feels like I have a sore throat or my tongue is too big for my mouth, and my jaw feels tight and tired, like hard to open my mouth fully, when I chew I can get tired quickly - it's such weird symptoms.

8. I am grateful we have free healthcare in Canada, but where I am we have a lack of doctors, so people are literally dying or getting worse because they have to wait a year to see a specialist and we have no options to pay and go privately to see someone quicker like you do in the USA.

I know I am not really asking a question here, but I respect all of your opinions & knowledge. Does this sound like ALS or more like neuropathy? Any suggestions of what I should do.

This has really taken a toll on my mental & physical health. It's even affecting my relationship with my wife, I feel like a lot of times she may think I am making this all up, because it's so hard to explain my symptoms and they keep changing week to week. I just really want to get some answers.

I appreciate your help.

Best,

Oli
 

Bestfriends14

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First, I am sorry for your symptoms, but they do not resemble ALS in the tiniest bit. Secondly, I am from Victoria, and if your doctors did not see anything of concern, you will wait the 12 months to see a neurologist. If they saw something concerning, you would get in quickly. Third, both a neurologist and someone trained in conducting EMGs can perform the test. Lastly, yes, you can pay for an EMG and/or see a neurologist privately in Victoria or in Vancouver. Google it.

As for neuropathy, I do not know much about it, but it does not resemble ALS in the fact that involves the sensory symptoms. Further, we do not diagnose on the forum, so how can anyone say that it sounds like neuropathy? That is for your doctor to surmise. Again, absolutely nothing you have listed I have seen in my husband's case or in the several others I know of ALS. Please, stop focusing on a disease you do not evidence having and go live life.

I wish you nothing but the best. Please update AFTER you have had your EMG on the 26th.
 

Olitodd89

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Thanks for taking the time to respond, I really appreciate it.

I also want to say I am very sorry about your husband.

To your statement about being able to pay to get an EMG or an appointment with a Neuro privately. I have done extensive googling and even emailed Health Vantis Inc. and they confirmed that there are no private clinics that offer EMG - not sure about neuro. If I am wrong do you have any links or resources?

The problem is only 1 out of the 5 doctors actually saw me in person (and that was almost 2 months ago now) the rest was over video for Telus Health, so to actually see a doctor in person would be great. I can't get my own doctor, so I have to rely on any doctor I can find, so it's a different one every time which is frustrating.

You are right worrying doesn't help, but you telling me that my symptoms don't resemble ALS in the slightest really does help, so thank you.

Take care.
 
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