Progressive symptoms

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Pdagmire

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Hi All,

New to this forum, I've been experiencing some strange symptoms over the last five weeks. It started with twitching in my right hand and some pain in my right shoulder, a few days afterwards, I felt a numbness, tingling or heat like sensation down my right arm into my thumb. There is now pain in that thumb which subsides when I crack the knuckle but still persists. Ultrasound on the thumb came back clear. I also experienced the same tingling, numbness and burning sensation in my right foot and from time to time this foot now feels tight and I feel like I need to push off it more. I then began to experience twitching all over my body in the weeks following, including in my face and tongue. The twitching comes and goes and I don't experience it when moving.

In the last few days my right shoulder has become quite painful and I'm having difficulty raising the arm to the side or bending it behind my back without some significant pain. I've also recently noticed what looks like a 'dent' or 'scoop' in the lower part of the right bicep when flexing. Flexing my bicep in the right arm is also now difficult compared to my left. I also experienced the same numbness, tingling, burning sensation in the right arm a day before the shoulder began to cause pain. With my face, it twitches when I smile and I'm having difficulty holding a smile, the tongue twitches also occur after smiling and I have a feeling of numbness in the face.

I've made appointments with my PCP, they've recommended me for a blood test and also recommended I take some magnesium. Naturally I'm concerned with the strangeness of the symptoms and would appreciate any guidance the forum could provide on questions I should ask from my PCP. Should I insist on an EMG? Are my symptoms consistent with ALS? Appreciate that you are not doctors, but would like some insights on what my next steps should be. Thanks.
 

Pdagmire

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Hi Nikki, my apologies. Will review the community guidelines.
 

Pdagmire

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Hi All, just as an update. My blood tests and CT scan were clear. Since my last post, Ice started to experience some additional symptoms. I'm still having twitches all over my body, but I've now notices that after exercising my right arm, I experience twitches in my right hand around the thumb and my pinkie and ring finger. When I make a palm with my right hand, the pinkie finger peels away from the rest of hand and I've noticed some dents which I think might be atrophy. I've attached a photo which shows the suspected atrophy. The pain in my thumb on my right hand I know experience on my left thumb. I've also noticed that my voice has become more hoarse. My face and lips continue to twitch, particularly when I smile. My tongue also continues to twitch. It's been 7 weeks since my symptoms first started. According to my physiotherapist, my grip strength is the same in both my hands. My next step is to try and find a Neurologist, but I'm concerned about the progression of my symptoms. Any guidance would be appreciated. Thanks.

I should mention, when I stretch out my right pinky to the side, the skin/muscle contracts forming the dent in the photos, I then experience some spasms after.

Apologies in advance, should I have created a new thread for my updated symptoms? Would appreciate any thoughts form those in the forum. Thanks again.
 

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lgelb

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Please stay in one thread -- this one, as our rules specify.

My thoughts match with those you have already heard. All of your "updated symptoms" are subjective and they do not mesh with what we know of ALS, regardless, especially as diverse a range as you report over only seven weeks. Pinkies are notoriously weak, and evidently your grip strength remains stable bilaterally. Twitches when you smile can be simple tremors, often made worse by anxiety and winter dryness. A virus or other infection may remain a possibility and I would stay in touch with your GP as regards your overall health.

I would think if your GP were concerned about neurological disorders, s/he would refer you to a neurologist, without your having to find your own. That would likely also facilitate an earlier appointment. But I am confident any further testing will be reassuring as regards ALS or anything like it.

Best,
Laurie
 

Pdagmire

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Thanks Laurie, I have an appointment scheduled with my Neurologist on 29 Jan. Will keep the forum posted on the results. I forgot to mention, I've noticed some dents in my thenar of my left hand. Prior to this there was significant pain in the thumb, particularly at the base of the thumb and movement is partially restricted. Is this consistent with anything? I've attached some images of my left and right hand side by side with the "dents" or atrophy circled.
 

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lgelb

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Yup, it seems consistent with an overuse or pressure injury, if anything.

ALS doesn't present with thumb dents or anything else you've mentioned. Since we've said it all for now, please don't post again until after your appointment.
 

Pdagmire

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Hi All,



The results from my brain and cervical MRI came back clear. The blood tests were normal except for elevated CK (my level was 400 and the upper limit of normal is 200). The doctor has asked me to take the test again. I'm still experiencing whole body fasciculations and my voice is hoarse/croaky and I feel like I'm out of breath when talking. I'm also experiencing some post nasal drip. I've also noticed increased stiffness in my walking around my lower back and hips. I can still walk on my toes and heels and do calf raises. My hands feel clumsy, I haven't dropped anything yet but they feel weaker. I've also noticed some thinning around the wrist on my left hand (picture attached) and my left palm. Should I be concerned about the progression of my symptoms and the elevated CK? Of most concern to me is the voice. I'm from Australia, it's summer here and to me I sound like I have a cold (my family say I sound normal but on some words I go soft or raspy).

I still have an appointment with my Neurologist and will push for an EMG when I meet him.

Thanks.
 

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Pdagmire

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Sorry, bumping this thread, would appreciate any guidance. Trying to stay calm but still concerned.
 

lgelb

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At worst, you could have an adult-onset muscular dystrophy or something like that. Still not seeing ALS in this picture. A mild CK elevation doesn't mean anything in particular. And yes, please stay in this thread.
 

Pdagmire

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Hi All,

Attended my Neurologist appointment and the report has been provided. I've attached the conclusions and would appreciate help in interpreting them. I'm particularly concerned about the conclusion:

"Changes of chronic partial denervation/reinnervation in ulnar-innervated muscles bilaterally,
more prominent on the right, without acute denervation."

Is this finding consistent with ALS in its early stages, will I need to undergo additional EMGs?

Thanks everyone for your assistance.
 

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Nikki J

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Only chronic changes nothing acute. Not indicative of ALS. since you saw the neurologist what did they say?
 

Pdagmire

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Thanks Nikki, appreciate your swift respinse. They've provided the report to me but I'm not due to meet them until Friday next week. Just wanted to see if anyone on the forum could clarify in advance and put my mind at ease. Should I be concerned about the chronic changes?
 

Nikki J

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No. We often see worried people with this kind of report. It never seems to come to anything. aLS is a constant process of denervation so you see acute changes. You don’t have them. It also involves multiple areas.

are you an elbow leaner by chance?
 

Bestfriends14

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ALS should not be a concern for you at all. If there was something concerning, they would have told you that. You really need to move on from this fear of ALS because you don't have it. Not by your symptoms, not by your clinical exams, and not by you non-ALS EMG. That's really great news that I hope you'll be able to digest and be grateful for.

Good luck to you and take good care.
 
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