Old 12-04-2017, 11:52 AM #1 (permalink)
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Default Jaxson Follow up ~5 Months

Hello....I lost access to my old email address here is a link to my old thread:

Strange Combo of Symptoms

So I just wanted to circle back and wrap this up for those who may have been interested in my thread.

I've talked to a few different neuro's and have settled on two for my exams/opinions.

I see Dr Bowley locally at MGH and have what will be my final clinical on Friday.

He does not feel another EMG is warranted and he believes that the chances of my fasiculations (episodic in many, many places since late july) being related to an ALS process is close to zero. He would like to follow me until July if what I'm looking for is an official rule out, but we are dealing with a fraction of a percent or less chance at this point.

I did lots of reading on this unfortunately and based on information I've seen from world-renowed neurologists like Dr Andrew Eisen, Prof Kevin Talbot, and Dr Martin Turner 1 year seems overly-conservative.

In the meantime, to get a second opinion (mainly b/c dr bowley wouldn't do a repeat emg unless my clinical changed) I spoke with Dr. Lomen-Hoerth at UCSF.

She looked at my clinical, my emg, blood work, and MRI and said I should stop worrying about ALS. In her opinion I don't have it or an "early manifestation" of it.

Dr. Lomen Hoerth would like to do a repeat EMG at 12 months on my left calf but not to check for ALS but to make sure I don't have a sciatic nerve issue that needs to be addressed.

It appears, despite having fasciculation's (intermittently) in my hands, up and down the arms/shoulders, glutes, back, abdomen, nose, lip, eyelid, an EMG on my upper limbs is not needed.

Prevailing wisdom seems to be given that the fasciculation's showed no practical evidence of ALS (Dr Lomen Hoerth said she's never seen it start in the calf plus my recruitment was good, no other abnormalities other than the +1 psw/fib, no fasics, etc) it's more than reasonable to assume to other fascis that started very shortly after the calves are indeed benign.

My goal is to have a clean clinical on Friday, which I fully expect given all the self-testing I've done, and then meet with Dr Lomen Hoerth in the summer to address my sciatic nerve issue.

I've also learned that lots of people twitch and that sometimes people who've developed ALS twitched for many years prior and sometimes even before weakness and some people who've twitched also probably developed cancer at some point or some other horrible disease.

I've learned that while an EMG is helpful to an extent, at least in so far as ruling out current fasics being related to ALS it doesn't mean forever (even though the scant studies available show no one with BFS developed ALS via Mayo but given how rare ALS is this isn't surprising IMO)...

So the real issue is getting over the fear of ALS itself, in my experience this is not done by extensive reassurance/testing because it's not like the fasics just stop with BFS..and just because you have a clean exam/emg now it's not a 5-40 year clearance...have to learn to deal with the response to symptoms, I'm still working on that but now it's time for me to move on.

I also went to the highest rated insurance carrier in the country for a 5 million dollar policy (they have all my records) and that was approved so...that was a nice bit of reassurance as well.

So with essentially a practically clean EMG from 4-5 months ago and clean clinical and reassurance from Dr Lomen Hoerth/life insurance, off I go. Thanks to everyone who provided helpful feedback and reassurance.

Last edited by jaxson2 : 12-04-2017 at 12:41 PM
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Old 12-04-2017, 06:46 PM #2 (permalink)
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Default Re: Jaxson Follow up ~5 Months

Great news, Jaxson

I'm very happy for you!
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