Question about finger weakness/sensation

[LastResort]

Here we go,

I'm a 23 years old healthy male (well before this worrisome) and had developed some kind of weakness or functional differences in my left pinky and ring finger. For example, I found it rather awkward when I'm typing and while handling an egg. Now before you send me swiftly to the psych ward, can you guys confirm a question that I have regarding weakness.

From what I've read around here, people with ALS usually find out about their onset from 'failing' something while everything else feels normal. In my case, I consciously have this weird annoying sensation that my hand on the pinky side feels kind of heavy while the rest of my arm and shoulder has this weird sensation. In a typical ALS case however, the individual usually finds out about his/her weakness from failing to do something without any prior suspicion from 'feelings'. Am I right in this assumption?

I've had episodes of BFS before (and freaked out about it already) so I'm not too concerned for that, considering how inconsistent they are. I've went to the GP today in the hope that it was an Ulnar entrapment of some sort but alas, that was not the case. Of course she did some physical checks and found no clinical weakness. Needless to say, she laughed at my mentioning of ALS (but her response of "isn't that the one where it starts in the leg and you get weak all over" greatly made me doubt her credentials in the topic. Do you guys think just getting an EMG to ease my mind is a good choice or is it just a waste at this stage?

Thank you so much and I greatly admire the positivity and courage displayed in these forums.

 

[Clearwater AL]

"Do you guys think just getting an EMG to ease my mind is a good choice or is it just a waste at this stage?"

If you're in concern to possibly having a terminal disease such as ALS. and being that you posted here... go back to your GP and ask for a referral to a Neurologist. There have been several "pinky finger" symptom inquiries here lately... might be something there.

 

[ECpara]

Yes, you are right in your assumption. Any "feelings" point away from ALS. "Sensations", "heaviness", not ALS. Suit yourself if you want go through the expense and painful testing by a qualified neurologist, but I think you'd be wasting your money and time. But good luck just the same!

 

[LastResort]

After some thoughts on the subject, I did have a slight concussion 2 weeks ago and it could only now be manifesting itself. The fact that I have this constant mild headache may be testament to that. Regardless, I'll go back to my GP and mention the problem (I actually forgot to tell her about the fact that I hit my head!? duh!) and probably get an MRI to get that checked out. I'm grateful for the responses and have learned a lot about this horrible disease in the process of this panic episode. Thank you and good luck to you all.

 

[JWAN]

Yes, you are right in your assumption. Any "feelings" point away from ALS. "Sensations", "heaviness", not ALS. Suit yourself if you want go through the expense and painful testing by a qualified neurologist, but I think you'd be wasting your money and time. But good luck just the same!

Pardon me, but I can't help but feel that your response is a just a little off.
Please believe me when I say that I'm not trying to start an argument here, but I think it's wrong to tell someone that "any feelings" point away from ALS. Especially feelings of heaviness. I think after lurking here for months on end and reading thread after thread from people who have posted one description of heaviness, cramping, tightness, and pain in general, it's safe to say that SOME people actually DO have feelings of heaviness and pain that are connected with their symptoms of ALS.

 

[Nikki J]

Certainly many people with ALS experience all of the above during the course of their disease. I can not think of an example though of someone whose initial presenting symptom of ALS was heaviness in a limb which is what this op describes. I think the typical arm onset person would be like my sister who suddenly was unable to do up a button but experienced no sensory component with it.

 

[JWAN]

I don't know, maybe I'm just confusing ALS with other MND's their symptoms. But here is an example I found of where it is stated that some patients complain of a heaviness in their limbs. I know that is one of my husband's complaint.


Motor neurone disease (MND) is mostly a sporadic disease of middle and elderly life presenting in the sixth and seventh decades. However, it can present in much younger patients, usually with familial MND.

•The classic form of the disease is also called amyotrophic lateral sclerosis (ALS). It tends to be focal in onset, with a particular group of muscles affected first. This presents:•With a mixture of upper motor neurone (UMN) and lower motor neurone (LMN) features (for example, with a wasted fasciculating biceps with a brisk, easily obtained biceps' reflex).

•In three recognised patterns:•Limb onset - by far the most common.
•Bulbar onset - 20% of cases.
•Respiratory onset - the least common.


•The rarer variants of the disease can present in two ways:•With pure UMN features (primary lateral sclerosis).
•With pure LMN features (progressive muscular atrophy).


Symptoms

Patients or their families often notice problems occurring in one or more of the patterns below:

•Limb weakness - usually affects the upper limbs:•Causes patients to drop objects or have difficulty manipulating objects with one hand (turning keys, writing and opening bottles).

•Wrist drop, stiffness, weakness or cramping of the hands may also occur.

•Patients may also notice a change in the appearance of their hands (due to wasting of the intrinsic muscles).

•Fasciculations of the muscles of the limbs may be noticed prior to weakness developing.

However, occasionally problems in the leg or legs may occur:•Foot drop (early).

•Gait disorder.

•A sensation of heaviness of one or both legs.

•A tendency to trip.

•Difficulty in rising from low chairs and climbing stairs.

•Excessive fatigue when walking.

 

[Nikki J]

Source? And I still do not think that is a first symptom. I have noticed some of the online references especially ALSA tend to mush a lot of symptoms together implying they all could occur at the very beginning.

 

[JWAN]

Sorry, I haven't learned how to edit a post yet... here is the source I got that one from. But there was a pamphlet from the Cleveland Clinic where I took my husband two weeks ago that lists the sensation of heaviness as an initial complaint as well. That's why I questioned it yesterday too. Motor Neurone Disease. ALS information. MND information | Patient.co.uk

 

[JWAN]

I posted the source, but I got a message saying my posts won't be visible until a moderator okays it.

 

[Nikki J]

Thank you. It can be confusing to read British sources as they lump PLS and the bulbar palsies in with ALS and call them all MND. I am not sure how good or bad that source is but I am not seeing this is a patient saying my first symptom was heaviness. I can see by the time someone gets diagnosed they might have it but if you tease it out maybe it was I tripped then I walked funny then my leg was heavy or tired. For a lot of people a lot has happened by the time they get diagnosed and it can be hard to remember the exact order and I suspect often the doctor does not bother to get an exact timetable as it may not matter

 

[LastResort]

Ok I have to be completely honest with you guys, my fear had not completely subsided and I will probably have my GP refer me to a Neuro. This mild hand weakness (without any form of pain) is bugging the heck out of me and I really need some peace of mind to continue for my university works.

A final question, why is it that sometimes members on this forum have initial clean emgs but have dirty ones later?

 

[Nikki J]

Going to your doctor is a great idea
I copied my recent post addressing your question
As Dusty says those claims of normal EMGs are mostly vague but some people I know to be genuine began with upper motor neuron disease which is found on physical exam and went on to develop lower motor neuron disease which is found on EMG. I do not know about your husbands case and the rest of this comment is to the DIHALS who are reading this. There is a major difference between seeing the neurologist and having a normal exam and EMG and being one of those people who have documented upper motor neuron disease that progresses to ALS with an abnormal EMG UMN symptoms can be severe and send someone to the neurologist but those people are not told they are fine even if their initial EMG is ok

 

[LastResort]

Thank you so much for that reply Nikki!

Guess there's no point speculating until I get an EMG then. If it's abnormal, I'll probably just quit school and just travel the world haha but lets not hope it comes to that eh

 

[Dusty7]

I have heaviness in my legs. In fact I remember telling my wife during our first visit to Mayo (Jax) that my right leg felt "dead". But this was after I
had already been diagnosed with ALS. And this heaviness or dead feeling was not a symptom I presented with. My presenting symptoms were the classic weakness and atrophy. As Nikki has been trying to explain, "presenting" symptoms are way different from "symptoms in the course."

Obviously, when posters are posting in the DIHALS forum, the symptoms they are talking about have to be "presenting" symptoms and not "symptoms in the course" because they have not been diagnosed with ALS yet. Therefore, for purposes of the DIHALS sub-forum, I don't believe heaviness is a symptom that points to ALS.