Awaiting a diagnosis

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Kc0212

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Joined
Dec 8, 2023
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Reason
Learn about ALS
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00/0000
Country
US
State
NY
City
Hamburg
Hi everyone,
I am a 31 year old female and a 2 year old daughter. I did read the before you post section and there’s lots of good info.
About a month ago, I started feeling like my right arm and leg just felt weak. Like I would brush my hair and my arm would get more tired than the other. The next day I woke up with twitching. The twitching is usually on my right upper arm, thigh, foot. Sometimes I do get some on the left and in other places like my chest.
Went to neuro today and she said everyone of my relexes are brisk and clonus in both feet/ankles?
She said she didn’t feel or see any weakness or atrophy. When she said hyperreflexima and clonus I lost it. I’m so embarrassed but I have a 2 year old.
She ordered blood work, EEG, EMG. Scheduled 6 weeks out. I’m sick about it. About when this started I started taking B12 and vitamin D supplements. The twitching isn’t getting bettter but it’s not worse. Just need somewhere to talk I guess. Thanks everyone
-Kristi
 
Generalized hyperreflexia does not sound like ALS onset. ALS starts in one area not all limbs together. It is extremely common especially in young people and nervous people Limited clonus is also normal and again more likely if stressed. How many beats did you have?

Even if these are true upper motor neuron findings which it is not clear they are there are a number of other upper motor neuron syndromes that are much less dire. Again bilateral/ all over signs point away from ALS
 
Hi thanks for the reply.
She didn’t give me a number she brought in another Dr who said ‘a couple’.
A few other things
Had MRI w/o contrast in Dec 2023 and it was negative.
No family history
 
A couple presumably means 2 or 3. Anything under six is a normal variant. Follow through with the plan but it certainly isn’t something that sounds like it is going to be ALS. Go enjoy your family while you wait
 
With a toddler, I'm sure your sleep is not all that. Issues with the R arm/leg might reflect a pillow, mattress, and/or chair that might not be adequately supporting you these days. You might also check how you are lifting/holding her, and whether you or she might be pressing on a nerve or two.

Morning stretching and keeping up with your fitness routine can't hurt, either. Like Nikki, I doubt that you have ALS or anything like it.
 
I just wanted to attach a picture of the NPs examination. It’s hard not to panic and think the anxiety makes me feel like I have more symptoms.
 

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This is a great report bc there are no functional deficits, and says exactly what we were talking about -- insignificant clonus, jumpy muscles (I could have those tomorrow if I didn't sleep tonight).

Nothing to feel anxious about. If you can't control your anxiety after a good night's sleep, consider telecounseling since you can probably get that sooner (there are on-demand portals).
 
Hi guys.
Unfortunately, it seems like some symptoms have moved to my mouth. A few days ago I noticed my roof of my mouth felt weird- like I could all of the sudden feel it. I looked in my mouth and it looks like my soft palate has collapsed. I can not see my throat unless I stick my tongue out far. I am also experiencing burning tongue. I don’t have any slurring of speech I don’t think. My uvula also deviates a little to the right. None of these things I’ve ever noticed before. I asked them to now include bulbar muscles on the EMG.
I know that it’s not really common in my age (31) F but I’m so scared
 
Kc, you are showing classic signs of Health Anxiety. So often we see where body
muscles symptoms get somewhat dismissed then symptoms become throat
and tongue issues.

You say you don’t have any slurring of speech yet you describe several new
symptoms.

Until your EMG stop reading threads here and stop Dr. Google. Igelb gave you
you the best advice. Yes, your young age but being so scared will effect the
care and love of your toddler.

No... it may not be easy but really try until the EMG. Also... stop self diagnosis.
 
Just wanted to send an update
Had my EMG yesterday.. the Dr told me after everything looked pretty normal.
The impression was something like ‘this is a normal exam, no sign of upper or lower motor neuron disease’.
I also got my blood work back and everything is normal besides my CRP which was 10.4.
I’m still having twitching
She also did a full exam and didn’t find any weakness but still +3 in all reflexes +clonus.
 
Thanks for the update. As we have said twitching is not worrisome without weakness and the hyperreflexia and insignificant clonus are not either. So you have an essentially normal exam and a normal emg. Not als. The crp is not an als specific test but indicates you have some inflammation going on. It is up to your doctor to decide what to do about it. They may just repeat it as it isn’t terribly high. Maybe you had a virus you didn’t notice
 
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