Have an aunt with ALS.. young and having body-wide twitches, spasticity, possible atrophy, could this be the start of it for me?

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nfly27

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Hi all,

This is my first post. Thank you in advance to this community and to those folks who support others touched by this disease. I wouldn't post here unless I was truly existentially worried.

Summary of my situation:
  1. Aunt was dx'd early in her life (<30), around my age. She's still alive ~15yrs later, so very slow progression. No other known case in my family tree.
  2. About a year ago, after possibly some trauma while in the ocean/rough waves, I started having body-wide twitching
  3. I've had multiple non-blackout concussions in the past 3-4 years, which seems to be a risk factor for ALS. Possibly had one during this ocean/waves episode, not sure.
  4. Twitching started primarily in thigh/quad area of legs, probably 90% of the time originally but is now more evenly distributed (60% legs, 40% elsewhere)
  5. The twitching was accompanied by tightness/stiffness/weird type of pain also in the thigh/quad area. Pain was not "burning" or "pins and needles", something else.. duller, maybe cramp like. Severity of the symptoms varied greatly day to day.. but never went fully away. Sometimes had lower back pain on/off.
  6. I found my legs getting more easily fatigued, e.g. when trying to do a stationary bike.
  7. I saw two Neuro's earlier this year.
    1. 1st neuro (local, generalist) - January
      1. Only saw me once, follow-ups were with a resident in his office. In his initial assessment, he seemed to find weakness in my thumbs.
      2. Ordered MRI. MRI showed neck straightening and two bulging + 1 protruding (herniated) disks in lower back. However, the report does not note obvious impingement on the nerves by these findings.
      3. He did an EMG/NCV in legs and arms, found nothing in legs, saw a few fibs that in his analysis indicates C5/C6 bilateral radiculopathy.
      4. To be honest I don't know how to interpret his analysis. He didn't seem particularly trust worthy and my follow-ups were with someone under his wing, not he himself. I also heard him be anti-mask.. Never got a DX, they just offered a prescription for marijuana and referral to pain doctor.
    2. 2nd neuro, ALS specialist in Florida Mayo (~March)
      1. Did a physical exam, did not note any clinical weakness, overactive reflexes, etc.
      2. Hypothesized it may be anxiety-caused, suggested "fasciculation anxiety syndrome" similar to what happens in physicians
      3. Ordered an EMG+NCV anyway. EMG+NCV were taken by a different doctor who only tested right side. No fibs or any disturbance found at that time.
Situation as of last few months:
  1. I tried to relax and convince myself that it was indeed just anxiety.
  2. Twitching/stiffness/etc. in legs never fully went away but overall "became manageable". Body wide twitching continued.
  3. In ~August, I started feeling weird things in my hands, and this is really when I started to freak out again
  4. Hands get tired e.g. when folding clothes, grinding pepper, etc. Don't think I've lost dexterity but this is "easy fatigue" of sorts. Arms also get tired when holding over head e.g. when shampooing for a minute+.
  5. I feel almost constant dull, slight pain in my left adductor pollicis. If I press on something too much - like a lid - it'll hurt. I have a similar but less prominent sensation in the same area on my right hand.
  6. Sometimes I get "cramp" like sensation on my outter pinky in both hands. This kind of comes and goes from time to time and is somewhat infrequent.
  7. A chiropractor did a 'grip' test with one of those hand grip measurement things. Noted a ~25% weakness in left hand. Not sure how medically objective this was. My left hand did hurt all day after doing this in the problem areas mentioned above.
  8. I sometimes feel that my tongue gets fatigued when chewing on something difficult, like meat or when sucking on a suction-water bottle. No swallowing difficulties and I can still chew and eat fine in the end. But I have noticed it.
  9. I also sometimes feel like the outer edges of my lips get wet easily. In fact, they have visibly become irritated there once or twive. This more or less comes and goes though.
  10. My left shoulder has a day here and there in which it feels quite sore and easily fatigued. This goes away but has happened a few times.
  11. This has been accompanied by often with severe neck pain, in particular when looking up and in-between the shoulder blades but in general lots of neck discomfort.
  12. My touch/sensation + reflexes seem normal per PCP I just saw. I have felt some 'tingles' here and there on my right hand, but fairly rare. It's partly what makes me hope it's just neck radiculopathy + bfs.
  13. PCP did basic clinical weakness tests and didn't note anything. A Physical therapy doctor did the same and only noted a bit of possible weakness when pushing down on my left arm when having it lifted and to the side. I had left shoulder pain prior to that meeting which could have been correlated.
  14. Most worrying of all, I seem to have visible atrophy in the same left adductor pollicis where I feel that dull pain. I think I saw some on my right side too. I thought maybe it was in my head but I showed a PCP the other day and he didn't deny/confirm atrophy, said he wasn't sure and ordered an NCV. When hand is wet it becomes more apparent. I attached pictures, sadly I don't have previous pictures to compare. I did see from a fuzzy previous picture of me holding a receipt from 2yrs+ ago a slight 'dimple' in my left hand (colored green in picture). This doesn't worry me too much.. it's more so the ridge (colored red in picture). If I pinch and look at the outside, I also see a 'ridge' in the outside thumb area of my left compared to my right. Again, this is around where if I press on it, there's pain/discomfort.

Long and complex situation.. but please, if you had onset that somewhat mirrored this or opposite: if you had similar symptoms but in the end had BFS + some type of radiculopathy or it was all just anxiety or something else, please share. I don't see another neuro (that specializes in ALS/neurodegenerative diseases) until Dec. Any thoughts would be greatly appreciated.

I'm once again am super fearful for my life. Too many things that sound ALS-like even though I don't have outright disability of my muscles at this time.
 

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Clearwater AL

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nfly27, here are some key paragraphs of your post... along with your long lengthy description of symptoms
that many point away from ALS and kind of comparisons to your Aunt.

“Long and complex situation.. but please, if you had onset that somewhat mirrored this or opposite: if you had similar symptoms but in the end had BFS + some type of radiculopathy or it was all just anxiety or something else, please share.”

*As somewhat of a policy we refrain from having others (“Could this be ALS’ers”) on someone else’s thread and current members too.

“2nd neuro, ALS specialist in Florida Mayo (~March) Did a physical exam, did not note any clinical weakness, overactive reflexes, etc. Hypothesized it may be anxiety-caused, suggested "fasciculation anxiety syndrome" similar to what happens in physicians. Ordered an EMG+NCV anyway. EMG+NCV were taken by a different doctor who only tested right side. No fibs or any disturbance found at that time.” Great news !

*Golly, “2nd neuro, ALS specialist in Florida Mayo (~March)” that is one of the best. Are you doubting their
findings? That's two Neuros and the second one an ALS specialist.

*Pictures do nothing for us… any atrophy has to be determined by a Neurologist. No one here is going to post anything affirmative from looking at your pictures.

I am very familiar with “Split Hand Syndrome”… none of your thumb muscles indicate that possibility.

“Most worrying of all, I seem to have visible atrophy in the same left adductor pollicis where I feel that dull pain.”
*That’s what you seem… only a Neurologist can determine that.

Like many before you… the “limbo” until December can best be served for you is to just refrain from more research
of your symptoms. And… searching old threads here looking for comparison.

Please ask you PCP for help with your anxiety until December. Again, many, many before you have been through the same.
 
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affected

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Wow sorry you live in such fear.
Your Aunt can't have passed ALS to you, only the parent she is related to and it seems they do not have ALS, so if they don't have it they can't pass it.
It doesn't sound like you read this thoroughly, please do it will really answer all your fears and worries over what you are feeling.

Please work with a doctor, but we see nothing at all of ALS in your situation so can't help you I'm so sorry.
 
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