IdoneDeClare
Member
- Joined
- Feb 15, 2023
- Messages
- 13
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- NE
Since my post was locked, I wanted to come back simply to say..thank you for being candid and clear. Please always know that kindness is in honesty, not always in presentation.
I had a quivering tongue extended and at rest, and I DO have health anxiety. I googled (anyone worried about ALS or anything else? NEVER google. Dr. Google is not your friend. Ever. Omg)
I ended up having to wait until 4/3 for a neuro exam and the majority of the movement had ceased by then. My tongue, in my mouth and at rest, resembles every other tongue (not perfectly still, but slight movement/quiver that all tongues seem to have..yes..my family let me look in their mouths)
I had my visit, I had all reflexes tested, the neuro went "ALS symptoms don't go away, so I think we're good there. Also, you have migraines.. and probably carpal tunnel, come back we'll do an EMG on both hands and elbows"
Came back 5/5. EMG performed. No motor nerve damage, obvious sensory nerve damage completely in line with mild carpal and cubital tunnel.
THEN GUESS WHAT?! I went to an ortho spine doc (my back, she's a spicy disaster) and he went "hmmm" during a reflex check on my ankle. You can't say "hmmm" around someone with health anxiety. That's like waving a red cloak in front of an angry bull. "HMM?!" I said. "oh, you just have three beats of clonus in your right ankle. Normal is two or less. So it could be nothing..or it could be a neurological disorder. You're hyperreflexive a bit in your knee"
Guess what I did? Because I'm an idiot who cannot take her own advice? I googled. OMG CLONUS AND HYPERREFLEXIVE IS ALS! I FREAKING KNEW IT!
Per the Ortho, I should see a neuro. Instead, I sent a message to the neuro who had seen me all of a month prior and went "OMG!" and he, bless his heart, basically went, "...dumb. No. I did the reflex test. Yours are fine. Some people are hyperreflexive. Your strength tests are all normal, no muscle wasting, normal gait and no loss of sensation anywhere. It's not a neuro degenerative issue. You're fine"
...so my advice is? When the folks here are sometimes brusque, or seem like they're telling you to chill out and THINK for a moment? They mean it. They mean it from a place of kindness, and probably exasperation. They understand you're panicking, but they really do want to give you the assurance you're looking for even if you don't want to see it.
And if you're anything like me, you'll still panic a little and look at every little weird twinge as some "but they missed it!" moment. ("my head feels like it's shaky in the morning!" "Why do my toes feel prickly on my left foot if I sit too long!" "sometimes I fumble things if someone hands it to me!") and like me? You will have to be okay, even if you don't want to be. I even googled "can an EMG mistake ALS for Carpal Tunnel?" and that's the one time even Google was like "...girl, no. Stop it. Look at your life. Look at your choices."
I am working on it. I hope you can too <3
To the wonderful people of this forum who have gone through this journey as patients or caregivers, I cannot begin to imagine the strength it takes to spend the time ultimately trying to help other people see through their worst fears that have or are your reality. You have my sincerest gratitude and believe me when I say this with all the love I have..I truly hope to never have to have your help again!
I also want people to consider just how rare ALS really is, per reported statistics. Then if you, like me, happy to be a fat person? Consider the large scale studies that indicate how you have a further near 50% lower chance than the already low chance (in one NIH study, it showed an obese woman's chance as around .00006 to MAYBE .0007% of study participants in that cohort as obtaining a diagnosis)
Not saying it's IMPOSSIBLE? Just..it really is improbable
So sometimes..remember your math is important!
I had a quivering tongue extended and at rest, and I DO have health anxiety. I googled (anyone worried about ALS or anything else? NEVER google. Dr. Google is not your friend. Ever. Omg)
I ended up having to wait until 4/3 for a neuro exam and the majority of the movement had ceased by then. My tongue, in my mouth and at rest, resembles every other tongue (not perfectly still, but slight movement/quiver that all tongues seem to have..yes..my family let me look in their mouths)
I had my visit, I had all reflexes tested, the neuro went "ALS symptoms don't go away, so I think we're good there. Also, you have migraines.. and probably carpal tunnel, come back we'll do an EMG on both hands and elbows"
Came back 5/5. EMG performed. No motor nerve damage, obvious sensory nerve damage completely in line with mild carpal and cubital tunnel.
THEN GUESS WHAT?! I went to an ortho spine doc (my back, she's a spicy disaster) and he went "hmmm" during a reflex check on my ankle. You can't say "hmmm" around someone with health anxiety. That's like waving a red cloak in front of an angry bull. "HMM?!" I said. "oh, you just have three beats of clonus in your right ankle. Normal is two or less. So it could be nothing..or it could be a neurological disorder. You're hyperreflexive a bit in your knee"
Guess what I did? Because I'm an idiot who cannot take her own advice? I googled. OMG CLONUS AND HYPERREFLEXIVE IS ALS! I FREAKING KNEW IT!
Per the Ortho, I should see a neuro. Instead, I sent a message to the neuro who had seen me all of a month prior and went "OMG!" and he, bless his heart, basically went, "...dumb. No. I did the reflex test. Yours are fine. Some people are hyperreflexive. Your strength tests are all normal, no muscle wasting, normal gait and no loss of sensation anywhere. It's not a neuro degenerative issue. You're fine"
...so my advice is? When the folks here are sometimes brusque, or seem like they're telling you to chill out and THINK for a moment? They mean it. They mean it from a place of kindness, and probably exasperation. They understand you're panicking, but they really do want to give you the assurance you're looking for even if you don't want to see it.
And if you're anything like me, you'll still panic a little and look at every little weird twinge as some "but they missed it!" moment. ("my head feels like it's shaky in the morning!" "Why do my toes feel prickly on my left foot if I sit too long!" "sometimes I fumble things if someone hands it to me!") and like me? You will have to be okay, even if you don't want to be. I even googled "can an EMG mistake ALS for Carpal Tunnel?" and that's the one time even Google was like "...girl, no. Stop it. Look at your life. Look at your choices."
I am working on it. I hope you can too <3
To the wonderful people of this forum who have gone through this journey as patients or caregivers, I cannot begin to imagine the strength it takes to spend the time ultimately trying to help other people see through their worst fears that have or are your reality. You have my sincerest gratitude and believe me when I say this with all the love I have..I truly hope to never have to have your help again!
I also want people to consider just how rare ALS really is, per reported statistics. Then if you, like me, happy to be a fat person? Consider the large scale studies that indicate how you have a further near 50% lower chance than the already low chance (in one NIH study, it showed an obese woman's chance as around .00006 to MAYBE .0007% of study participants in that cohort as obtaining a diagnosis)
Not saying it's IMPOSSIBLE? Just..it really is improbable
So sometimes..remember your math is important!
