Musings on Pain and Fasciculations

EricInLA

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Actually my first post said 17 months of continued fasciculations and a dirty EMG, with the doctor listing as possibilities i) ulnar neuropathy, ii) radiculopathy, or iii) the beginning stages of MND. I don't mean to belabor the point, and of course I'm not pointing fingers at anyone. I just feel that as a 49-year male reporting 17 months of continued fasciculations, an abnormal EMG, hand/finger weakness and strained ability to handwrite, I shouldn't have been told that my symptoms did not even "remotely" resemble ALS. I know there are others who have been similarly dismissed who have received a bad diagnosis later, and my only point here is we should be careful in what we say to those who have symptoms that can indicate MND may be in the differential diagnosis, particularly if they are in their 40s or older. Perhaps my issue is with the wording in the stickies - I haven't read those in a while . . . maybe I should re-visit them.

A related point, which ties back to Kevin's original motivation for this threat - I've been thinking for a while that we shouldn't be telling people that pain "points away from ALS". I'm no doctor, but my understanding is that pain doesn't point "to" or "away". Usually it's not there, but sometimes it is, as others have pointed out.

OK, thanks for letting me get that off my chest.
 

Nikki J

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Disagree. Pain as a presenting symptom does point away from ALS because it points to other possibilities Pain may not rule out ALS completely because conditions can coexist or as in the example of the man with foot pain might be secondary to unrecognized gait disturbance or other weakness ( highly unlikely to be seen in our hypervigilant CIBALS group). I don’t know that was what was wrong with that man but it seems possible.

when a doctor sees a patient for a problem such as leg weakness they immediately start running through their mind possible causes and diagnoses and ask questions to get to likely causes. MND is not going to be high on the list to start unless someone is FALS and even then they will look at other things too. Pain is going to make them think pinched nerve, injury. Other sensory symptoms might be MS etc. So yes pain points the doctor away from MND and to other things. That doesn’t preclude circling back if indicated. But the vast majority of cibals are very clearly not going to have that happen
 

KevinM

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Ok, then, let’s move on. I think I’m going to re-hijack my own post and get back to music! Or football, or our favorite pets, or recommended Netflix shows, or the weather, or, or...anything else. K
 

Nikki J

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I am all for that. What about starting a new post on your chosen topic?
 

KevinM

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Yes! Great idea, Nikki. I’m assuming you meant the collective “your,” so you go first...
 

EricInLA

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OK lets go with FOOTBALL, since today is Championship Sunday. Totally amped for today's 2 big games. The early game features the epic matchup of Aaron Rodgers vs. Tom Brady - a matchup of perhaps the greatest quarterbacks of this generation. As a Cal grad, I'm rooting for Rodgers because he's a fellow Golden Bear. But I'll be happy in a different way if Brady wins. I'm no Brady fan, but I've had this running debate with my brother, and others, that the reason for New England's dynasty was Tom Brady, period. Bill Belichick is often regarded as the greatest coach ever because he helmed that team to 6 Super Bowl rings, but my contention is that he is a chump (a little hyperbole there) who was merely fortunate to coach the great Tom Brady. If Brady takes the Bucs to the Super Bowl at age 42, while New England suddenly can't make the playoffs after consistently making it to the Super Bowl, that proves the point.

In the afternoon game, I'm pulling for Buffalo, because I love a good underdog story, and I'm old enough to remember when that poor franchise lost 4 Super Bowls in a row. Go Bills!
 

KevinM

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Couldn’t agree more on the Rodgers-Brady matchup, Eric, just as I was pumped for the Brees-Brady matchup. Unfortunately Drew had a tough game. There is a whole lot to the adage about about getting hot at the right time. But being a Florida boy, I guess you know which team I’m rooting for.

Totally agree on supporting the Bills. In the way, way, back, when I was 9-10, the Bills were my favorite AFL team (that alone dates me, doesn’t it?). This was about 1967, and I used to devour the pro football magazines. I’ll never forget reading about the Bills tight end, a guy named Paul Costa, and being absolutely amazed that he weighed as much or more than most of the linemen, a whopping 250 lbs.! So laughable now, with most all tight ends at or above 260, and most every lineman well above 300 lbs. Very large, very fast, very strong people play the game now. K
 

lisa g

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Forget Rodgers-Brady match-up. Today I will be happily wearing my #15 Mahomes jersey. 😁 Go Chiefs
 

KevinM

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Knew it before you even posted Lisa! They are fun to watch and I usually root for them. But not today. Go Bills!
 

lisa g

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My daughter says I'm a trader being from New York. My husband will be rooting for the Bills now that the Brown's are done.
 

KimT

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I’m watching Tampa but I still have pain and fasciculations.
 

melab

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Good thoughts Kevin. I saw 4 neuromuscular physicians in Florida. ALL of them refused to do emg's in the beginning because they said pain was not a symptom and my strength was good. Dr Oskarsson at Mayo even refused to see me again and recommended a psychiatrist. He even blocked me from seeing other physicians at Mayo because I didn't follow his instructions to see a psychiatrist. He is the most arrogant Dr. All he did was delay plans and decisions that need to be made. Pain was my fist symptom. I was extremely athletic and I knew that the pain and lack of strength was not right. With so many pals with onset of pain why have physicians not changed their strategies? My nerve pain is unbearable. There really should be a group of pals that coordinate together to write clearly defined response and suggestions that should go out to physicians that specialize in this disease.
 

KevinM

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Thanks for chiming in melab. Just curious, where did you finally receive your diagnosis? It sounds like It wasn’t Mayo. Kevin
 

melab

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Dr. Wymer. If Gainesville. Saw Pulley for a while but the drive was long from orlando
 

KevinM

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I understand the long drive part. Plus, once you get a diagnosis, I question how much more a neurologist can do for you. “Under their care” is an overstatement to me, since it usually implies some treatment. It seems to me they want to see you for their own records more than for our benefit.

As far as clinics, some folks get a lot from them, some don’t. I have yet to attend one since I have a slow progression and haven’t needed the other specialists. Maybe that will change in the future, maybe not.

The bottom line for me is that we go through so much getting diagnosed that I don’t want to be prodded or tested any more. Kevin
 
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