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Freaked out about my symptoms

WorriedinIL

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Hi. I’m a 23 year old female that has been having some troubling symptoms for about 2 months. It all started April 1st with burning in my saliva glands, jaw pain, white tongue, and dry mouth. I figured it was a virus and wrote it off. However, it lasted for weeks and I started to develop some neurological symptoms. I first noticed a huge increase in floaters, a feeling as if my tongue was swollen. No issues with speech. Then there was numbness and tingling that gave way to what I have now which is widespread diffuse Fasicualtions. They started in my calf with an extreme calf cramp which then spread to my thigh and now it’s my whole body. Even my corner of my lip trembles when I open my mouth. However, the most troubling symptom to me is the fact that my pinky on my left hand feels harder to bend. There is pretty extreme pain there when I bend and flex it and at this point seems pretty impossible to bend without extreme pain. It has started having a tremor as well. I’ve also noticed popping of my joints, as well as this feeling in my limbs that feel like RLS but in my arms. I’m dropping things more and notice I’m more clumsy lately as well. I have a near constant 99.5 fever as well as tight muscles in my neck. I’m not sure if this is stress or if I should be legitimately concerned about ALS. I couldn’t get an apt with a neuro til June 24th and that just seems like too long to worry! Thanks in advance for any answers to my worries. I truly appreciate them.
 

KarenNWendyn

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I agree with Shiftkicker. See a primary care doctor.
This is most likely viral or possibly autoimmune. I doubt it’s a primary neurologic condition, and ALS would not even be a consideration.
 

WorriedinIL

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Hey guys,
Just following up. I saw my primary care doctor. She ran some blood work all which has come back normal.

I’m still having some muscle pain and stiffness and my left hand feels stiffer/harder to use everyday. I have some pretty intense tongue fasiculations that look just like the videos of MND. It looks like quivering when I even stick my tongue out the slightest bit.

No trouble speaking except for hoarseness at the end of the day and neck/jaw muscles that get really tight sometimes like someone is pulling on them.

She did a reflex check, and most of them were normal. However, my patellar knee reflexes were off the charts hyper. My knees shot up so high. She told me to follow up with the neurologist just cause she is at a loss for what it could be. I also always kinda of have this strained feeling in my calf. My fingers shake when I use them on my left hand and the other day when I tried to get up, my thigh muscles were uncontrollably shaking. I also notice a breathless feeling sometimes. The main thing however, that is bothering me, is my left arm has this feeling of needing to be tugged on. Almost like a numb feeling, but not. It’s hard to describe but it’s very annoying.

I’m a nurse and I keep noticing it’s harder and harder to open pill containers and such. I am crazy stiff in the morning and my tendon at the back of my neck pops every time I use it to turn my head. I’m still having the dry mouth and the jaw pain, as well as a white tongue.

Did anyone present with symptoms like these at the beginning or am I just being a hypochondriac who has something else going on and immediately jumps to the worst thing?

Thanks so much, and sorry to be a bother.
 
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KarenNWendyn

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The problem is that you have heard of ALS and now you’re hyper-aware of each and every sensation and symptom in your body and how it measures up to what you understand about ALS.

ALS doesn’t cause muscle pain and stiffness, hoarse voice, or tense muscles. Nor would it cause a strained feeling in your calf, morning stiffness, or popping.

You have not described muscle function failure which would be the hallmark of ALS. That would be when something stops working.

So I really don’t see ALS here. Undoubtedly stress and anxiety are intensifying all your symptoms. Whether or not there is something underlying the symptoms will reveal itself in time. Meanwhile keep working with your doctor.
 

WorriedinIL

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Hi Guys,
Sorry to bother again. I’m waiting my neurologist consult next week. I’m having some pretty troubling progression. I’ve found the past few weeks it is harder for me to write and I have to take every fiber of my energy to finish the line I’m writing for work. It looks like chicken scratch by the end. I also can barely hold my phone/a book without my wrist shaking terribly. I’m dropping literally everything, so much so that I have had people at work commenting on it. The tongue twitches are still there and have given way to some trouble swallowing (i.e. gagging on all my pills, coughing after liquids, throwing up meals often from the gagging). I’ve lost so much weight from trying to avoid hard foods. My gums and my jaw are just killing me. Both hands can barely lift shampoo bottles without shaking and dropping them. My primary doc keeps saying probably a post viral thing but how could that be for 3 months? I’m having nerve pain and what feels like joint pain from pushing myself so hard. I’m really afraid that at 24 years old, I can’t even swallow a tiny pill without profusely gagging.
Please please tell me that even with ALS, it wouldn’t progress so fast where in the span of 3 weeks both hands and my mouth are weak? How would this be so quick? I hate waiting for the neurologist. It’s eating me alive and it’s getting harder and harder to hide what’s going on from family, friends, and coworkers. Please help.
 

KarenNWendyn

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ALS wouldn’t progress that fast. Please update us after the neuro visit.
 

WorriedinIL

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Hi all,
Just had my nuero consult. Dr noted brisk reflexes, tremor, "claw like" hand on my left side, and a tongue quiver/tremor rather than tongue fasicualtion. She's running an EMG/ MRI and more blood tests. She's giving me some gabapentin to see if that helps the nerve/pulling feeling I've been feeling. She told me the EMG will tell more in terms of different neuropathies. She also noted that my skin has a "mottled" appearance that can be present in autoimmune conditions even though all my autoimmune panels came back negative. She told me to follow up on 6 to 8 weeks. For some odd reason, she isn't concerned about the gagging when swallowing solids because she said if I can still swallow liquids I'm ok. Possible carpal tunnel, diabetes, post viral syndrome, ms, or pinched nerves. She said she cannot fully rule out ALS/ MND but based on my current symptoms she's not concerned. What do you guys think? Should I relax that she says it's not ALS or wait for the EMG before I think I'm in the clear.
Thanks as always for all the continued support and advice. Me and my family appreciate it very very much.

Erin
 

KarenNWendyn

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I don’t think ALS is a concern at all, but I know you’re not going to let go of it until you get that clean EMG. In the meantime, I wouldn’t lose sleep worrying about ALS.

Not all autoimmune diseases have abnormal blood tests. Your doctor is correct that a mottling pattered on the skin can be seen in some autoimmune conditions. She sounds like a thorough doctor.
 
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