Old 08-22-2016, 08:20 AM #1
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Default Just a thank you to those folks reading and answeringthese threads

Good morning,

I have a family member recently diagnosed with ALS. A few months after this diagnosis, I noticed a very sudden lack of coordination in both hands, coupled with arm pain, some pins and needles, and cramped hands. I had a neuro exam 1 week before onset of these symptoms (was a migraine checkup) and I was told all 4 tendon reflexes are weak, but symmetrical. Naturally I consulted Dr. Google and that's when all the twitching started and that led me here. I'm getting my EMG tomorrow to see if I might have a trapped nerve that's causing my arm issues. I haven't posted about my symptoms because after reading the stickies and the advice to see a doctor FIRST, I felt it was disrespectful to take up everyone's time with my worries. I did want to say thank you, however, as I have been searching and reading the posts for similar experiences and it's put my mind at ease a bit. As I don't have clinical weakness, atrophy, or hyper-reflexes, it sounds like I need to be thinking about another diagnosis so that I can find the root of my problem and get healthy again. Bless you all.
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Old 08-22-2016, 01:47 PM #2
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Default Re: Just a thank you to those folks reading and answeringthese threads

You concluded correctly.
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Old 08-22-2016, 02:40 PM #3
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Default Re: Just a thank you to those folks reading and answeringthese threads

Quote:
Originally Posted by Atsugi View Post
You concluded correctly.
Dear Mike,

Thank you for your thoughtful reply. Between my cousin's diagnosis a few months ago, and my father nearly dying from a rare complication during surgery at a world-renowned hospital last fall, I haven't been able to look at my symptoms objectively. I can move my middle finger up and down independently, but it doesn't seem to want to move when I try to flutter all the fingers on that hand at the same time. It stays still. It only seems to want to move independently, and then I can perform the full range of motion. I'll post my results from my exam tomorrow in case those might be of use to others who might wish to think twice before posting about something that's likely benign, and then, as long as all is well, I'll do as the forum etiquette instructs and move along. I am very sorry for your loss, and I appreciate the kindness you showed me in replying to my post.
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Old 08-22-2016, 09:19 PM #4
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Default Re: Just a thank you to those folks reading and answeringthese threads

You doctor will help you figure out what, if anything, is wrong. You won't need to post results. We only deal in ALS. Please voice all your concerns about the results to your doctor. Thank you.
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Old 08-22-2016, 11:39 PM #5
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Default Re: Just a thank you to those folks reading and answeringthese threads

X, sorry to hear about your cousin's diagnosis. Feel free to encourage him/her and any caregivers to join us here.

Tomorrow, feel to close the loop if you think it could help someone else. You have clear insight into the stressful context that is likely affecting your ability to assess the severity of your symptoms objectively. Your cousin and dad surely also appreciate your energy and diligence on their behalf.

Best,
Laurie
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Old 08-23-2016, 11:04 AM #6
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Default Re: Just a thank you to those folks reading and answeringthese threads

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Originally Posted by lgelb View Post
X, sorry to hear about your cousin's diagnosis. Feel free to encourage him/her and any caregivers to join us here.

Tomorrow, feel to close the loop if you think it could help someone else. You have clear insight into the stressful context that is likely affecting your ability to assess the severity of your symptoms objectively. Your cousin and dad surely also appreciate your energy and diligence on their behalf.

Best,
Laurie
Dear Laurie,

Thank you for your kind words about my family. I think this forum could be a great place for my cousin to find support. Rare things seem rare until they happen to someone you care about, don't they?

The way that I used this forum was to read the stickies, search the threads, and at that point I decided I did not need to post a question and certainly not a private message. I just wanted to post a thank you to all of the people providing support and advice to individuals going through an incredibly and impossibly difficult time.

I noticed a lot of threads about individuals experiencing health anxiety and posting back and forth to PALS and CALS. If my experience can help to mitigate any of that, I can share that today I learned I have ulnar neuropathy, which led to a very sudden loss of coordination in my affected hand. If this helps anyone searching these threads and prevents some of the back-and-forth on these boards when there are people truly needing advice and support , then perhaps I have been useful in some very, very minuscule way.

I am so sorry for your loss, and I appreciate your thoughtfulness in thinking of my family.

All the best- I'll now follow the etiquette post and step away, other than to share this resource with anyone I know that is affected.

Many thanks and blessings to all.
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