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rmq00108

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Iowa
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So I am about eight to ten weeks into this, with fasciculations, mainly in the calfs, which started after I started exercising, but they haven't gone away and I do have some pain in the calfs. I also have the occasional one in my bicep, tricep, quad or back. However, they do stop for a couple days, then come back, and are not as frequent most days as they use to be. As noted in my first post I had a neuro exam by an internist with no noted concerns 6 weeks ago. I continue to run twice a week, play softball, and bike, but these twitches are like little whispers of concern. I have seen a few stories recently of ALS onset with just twitching (a couple American football players), but can't make heads or tails of the story. My question is, should I seek a second opinion or additional testing? I am obsessed with self testing, calf raises, walking on heels, walking backwards down stairs, etc., and the thoughts absorb much of my thoughts throughout the day. I admit I have pretty bad anxiety and am working with a CBT therapist and taking medication to try and address, but I can't shake this. It would be my assumption that if I had bilateral leg onset that the twitching would be accompanied by some sort of noticeable impairment. I don't know, just trying to avoid costly testing that I don't have insurance to cover.

Thank you!
 
If My cousin was experiencing your symptoms I would tell him not to worry even though as a gene positive person his risk for developing ALS is 96- 100 percent. You have no weakness and you had a normal neuro exam. You will be wasting your money and the doctor's time

Those stories are vague and incomplete. The couple of athletes for whom I have seen in depth reporting had significantly decreased performance ( indicating they had weakness) along with those twitches

It is great you are doing cbt. Spend your energy on that
 
Please go back and read the sticky titled READ BEFORE POSTING.

Every time you feel high anxiety, go and read it again. We designed that sticky to explain clearly what ALS really is and how it starts and to hope to relieve the kind of anxiety you have. So use it to help yourself.

No matter what you read, in truth, as Nikki states, twitching without clinical weakness or other clinical signs on examination is just not ALS. Reports may state twitching and so many then ignore the other clinical signs (that you cannot test yourself on) that accompanied the twitching. This fuels the anxiety instead of lessening it by reading fully and in context.

The more you focus on the twitches, and the more you self test (which is pointless), the more anxious you become and the more convincing it is in your mind.

I'm glad you are working on the anxiety, keep doing that as it will pay off for you.
 
I appreciate your time and feedback. I am truly grateful. It is a prison of sorts living with mental illness, and one you cannot seem to control. As noted I am working with CBT and meds, but as I said, the twitches are like little whispers of doubt. I am guessing after 10 weeks I would have seen some sort of notable weakness progression, as from what I understand, fasciculation's mean the muscle is dying. It is a daily struggle, not to be compared to that of PALS who my heart hurts for, but nonetheless, it is a very lonely place.
 
Why don't you join an anxiety forum? The world doesn't have to be a lonely place. You just need to seek out the right place to share your fears with.

There you can talk with others who are experiencing your issues. You will never be welcome here and I mean that in a wonderful way.
 
Thank you scaredwiftetx. In the last week or so I have started to have pain deep in my glute, down the back of me leg, and into the calf. It gets worse when I sit. It is bilateral, but is much worse on the left side, so I am a bit freaked out. I realize pain comes late in ALS, and I haven't lost strength, so I am holding onto that.

To your suggestion, thank you. I just did join anxietyzone and found some good feedback there. I also, as mentioned, am seeking therapy, so I hope to address the core of my issues. My anxiety is debilitating.

Lots of prayers to all!
 
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