ALS Symptoms

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jajaa6

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25M.Black. HIV+ / Vitamin D deficient. I’ve been having very vague symptoms since last July. I am now experiencing muscle twitches all over including my hands and feet and I’m very concerned for the possibility of ALS given my other symptoms matching. I’ve been having Leg/arm weakness, neck , shoulder and back pain, migraines (especially in the morning), trouble focusing & making decisions, hoarseness, coughing after food /drink intake here & there, abdominal pain that comes & goes. I’ve had several tests including a clear ct scan of my brain w/o contrast in November and a consult with a neurologist earlier this year.I’m trying to get in to see another neurologist but he is booked until August for a possible EEG.

I am unsure what I should make of these symptoms and I am very worried about what’s coming next. Is ALS a real possibility? Any help is appreciated.
 

affected

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Hi
Would you be able to tell us what the first neurologist diagnosed, or what they said they feel is going on in light of examining you?
You seem to have a lot of very generalised, all over things going on. We don't usually see ALS start this way.

Have a good careful read through this as it might help a lot.
 

KimT

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If you're getting an EEG, that test is likely because you're getting migraines.

Nobody is a medical doctor on here but it sounds like it's something systemic, not ALS.

Vitamin D deficiencies can cause all kinds of problems.

If I were you I'd drink lots of water, cut out caffeine, cut out processed food, eat clean, get lots of rest and ask your doctor what she or he thinks is going on. You might want to consult with a gastro to address the stomach issues. I say this because I have both GERD and gastritis and these can cause the symptoms you mentioned.

Try not to worry. Let your doctors figure it out.
 

lgelb

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I agree that this doesn't sound like ALS. I would ask your PCP about a sleep study, even one of the in-home ones where they mail you sensors. For a start, you can video your own sleep and look for choking, gasping, long intervals between breaths, excessive involuntary movement, etc. If you see anything questionable, you can show it to your doc.

Best,
Laurie
 

jajaa6

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Thank you all for your responses. I do not take them likely. I would also like to add that I’m now experiencing a strange sensation in my ankles, ongoing hoarseness, as well as cracking/cramping in my bones such as my hands. I’m not sure if my suspicion of awkward gait is just my health anxiety going into overdrive or not so there’s also that.
 

Nikki J

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Please don’t quote. It lengthens threads which makes it harder for those who are scrolling with eyegaze or other alternate methods.

ALS is a motor disease so sensations point away from it. Also cracking joints are not ALS symptoms cramping and hoarseness are non specific and again all over symptoms are not consistent with the onset of ALS. Please continue to work with your doctors and if you have known health anxiety address that
 

Firefighter58

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Your doctor is the place to start,
 

affected

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May I respectfully suggest that if you come here and ask questions of the terminally ill, and those caring for them, then you take the time to answer our specific questions. We can't help you at all.
Please see your doctor as they can examine you and order appropriate tests and explain the results.
 
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