Scared

[Swede]

(Previous thread here: Concerned)

Hi everyone, I am a 48 year old man from Sweden who has had some very scary symptoms lately.

It all began early December last year, when I noticed loss of strength in my right (dominant) hand. I didn’t fail at anything, but things like writing and opening bottles became more difficult than before.

A few days later, I woke up with twitches all over my body. That went on for about a week, and then the twitches gradually started moving to the right side of my body over a month or so, finally settling in my right calf and foot.

About two weeks later, probably mid January, I began to feel stiffness in the right calf, as well as pain and twitches in the right shoulder. Balance also became a slight problem, not that I ever fell, I just started to feel kind of unsteady when I walked.

I went to my local doctor, she performed a basic neurological exam and found exaggerated reflex in my right knee. All other places were normal. She ordered an MRI and a battery of blood tests, which ruled out any brain issue or infection. Inflammation such as rheumatism and similar stuff was also ruled out by a rheumatologist.

So then my doctor ordered an EMG, which will be done on the 20th of March, i.e. Wednesday next week at the time of writing.

While waiting for that, I noticed atrophy of my right (dominant) hand. I had an inflammation in that hand when I was in my 20s, and since then it’s kinda clenched when not in use, and I have never really felt a need to look at it before. But the other day I did, and was shocked. Half of the big meaty part below the thumb is gone, and there is just floppy skin where that half used to be. That’s on the palm side. On the non-palm side, I can see that the entire meaty area between the thumb and the index finger is sunk in rather than slightly protruding, as it used to be. There is just no meat in there, it’s mostly loose skin. And this is my *dominant* hand, the one that I use the most. If anything, it should be meatier than the left, not the other way around.

And on my right foot sole, I noticed that the meaty part just below the big toe is basically gone, it’s totally flat and replaced by floppy skin, and the area between that part and the heel, including the heel itself, is so sunk in that a good portion of the foot sole does not touch the ground at all. I'm not talking about the natural bend of the foot. The skin is really sunk in. That might explain the slight lack of balance.

Granted, I checked the hand and foot after I got all these symptoms, so there will of course be the risk of confirmation bias. However, I am aware that some assymetry is normal, and this is not a matter of the right hand and foot ‘maybe’ being ‘slightly’ less meaty than the left hand and foot. They are *considerably* less meaty in the areas that I have described. My guess is that this wasting has been going on for quite some time without me noticing.

So that’s where I’m at now; weakness in the right hand, twitches and pain in the right shoulder, twitches and stiffness in the right calf and foot, balance problems, exaggerated reflexes in the right knee, plus right hand and foot being considerably less meaty than the left hand and foot.

I may have an exaggerated reflex, but it’s no exaggeration to say that I’m pretty scared right now.

What do you think about this? Might there be a small chance that it is something else after all?

 

[lgelb]

A small chance? Much more than that, that this is not ALS. It does not present all at once as you describe, even if your self-perceived atrophy is clinical. Confirmation bias is indeed likely in your case. Wasting without weakness across the sites you describe, over the period of time you describe, isn't ALS. You would be much more disabled. Nor is it true that your dominant hand is always "meatier."

You may have an old injury that is causing some of the differences, and you might have a real foot problem that a podiatrist/physio can help with, but it sounds like you're weaving lots of things together to make ALS. I would think your PCP would have run labs to look for postviral markers and other systemic conditions as well.

Anyway, I expect your EMG, which is in a week, to be reassuring as regards ALS, and would encourage you to stop reading about it until that time.

 

[Swede]

Thank you for your reply Igelb. I will do my best to stay positive and not think about ALS until my EMG next week.

 

[Swede]

Thanks again for your reply.

I would just like to point out that although it is probably true that atrophy without weakness would point away from ALS, I do have weakness and had so from the start, mainly in the hand, and I believe that the balance problems could be a sign of weakness in the legs.
And while you are also probably correct in stating that the symptoms don't appear all at once, I don't feel that they did in my case.
It is a time period of almost 4 months, during which one symptom came after another, not all at once.

Now I see very visible atrophy on top of the right foot (was only a small dent last time I checked), where the lower leg meets the foot.
Standing on one leg is no longer possible with the right leg.
I'm experiencing increased balance problems, cannot walk in a straight line anymore.

Those of you who are diagnosed, how was your ability to walk and do other things when you started to see atrophy?

 

[Nikki J]

In my experience people with aggressive disease that spreads to multiple areas in a few months are pretty disabled in their original area at least. Your emg is in 5 days - less than 120 hours away. You will soon have answers. Let us know when you have results

 

[Swede]

Thank you very much for your reply, Nikki.
I live alone so it's not easy to deal with this fear, but I will try as best I can.
I have not been to a neuro yet, but I am guessing the EMG will give a strong clue if this is ALS?

 

[ShiftKicker]

Hey Swede,

This has been a pretty long term concern for you, as you've posted here a few years ago as well. It might be time to also find someone who can help you navigate health anxiety while you also work with your doctors to track down the causes for your physical symptoms.

Yes, EMGs provide information for a variety of different conditions along with ALS.

Please take care.

 

[Swede]

Hey Swede,

This has been a pretty long term concern for you, as you've posted here a few years ago as well. It might be time to also find someone who can help you navigate health anxiety while you also work with your doctors to track down the causes for your physical symptoms.

Yes, EMGs provide information for a variety of different conditions along with ALS.

Please take care.

Thank you, ShiftKicker. You are right; I do need to work on the anxiety as well.

Update:
Went to the ER 5 days ago, because of weird stiff/tingling sensation in the face plus slight tremor of the chin.
Since then, my speech has been kinda stuttery. Not a lot, just kinda stopping mid-word sometimes.
Have been experiencing excrutiating upper back pain radiating to the shoulder blade and neck, on and off, for the past few days.
Now, since about an hour, I see very obvious fasciculations in my tongue. It looks like 100 worms crawling around in there.
Time is 01:40 AM here. EMG is in 11 hours and 20 minutes.
Needless to say, I cannot sleep. I absolutely know for sure by now, that I have ALS.

 

[Swede]

Hi everyone, sorry for the late update.

So I had the EMG on the 20th, and it was abnormal. In my country, the doctor that ordered the test is supposed to give
the diagnosis after being sent the results, so the EMG-examiner won't say "You have ALS" or anything similar.
But he gave pretty clear hints.
While having the needle stuck in my left leg, he said "That's not good, it's not supposed to sound like that",
and then he put the needle somewhere else, can't remember where, to check the neck/head/facial area, and said that there I had
"a problem which needs an MRI". He also asked me when I left if I llive alone or have family present.
So I think it's pretty clear what is going on. Just waiting for the doctor to call me.

 

[Nikki J]

Emgs can be abnormal in many different ways. Needing an mri sounds like something else but of course you need to hear from your doctor. Hoping for better news

 

[Swede]

Doctor just called me. She read through the notes, but stopped at the EMG (he did a few different ones) and said after some silence that he hadn't written anything there (clearly untrue), and that she'd try to get a neuro appointment asap. So yup, here we go. I have a feeling I'll be seeing you all in another sub forum shortly.

 

[Swede]

Still haven't heard from the neuro. Wating is killing me. Seen increased atrophy in right thumb, right calf, and left forearm. Can hardly use right thumb anymore. Both legs now look like sticks. Walking very unsteady. How does one cope with just waiting to hear the obvious, living alone and watching the changes happen? Any advice? How did you all deal with it?

 

[Clearwater AL]

Swede, just a note... You have 14 messages, you joined Dec 2017, you asked
questions, they been answered by extremely ALS knowledgeable members,.
You've quoted replies. Your last two questions maybe answered. It is clear
you are dealing with long term Health Anxiety.

You are waiting to hear the "obvious". If is not... will you accept that?

When you finally get the report be sure and post the Summary/Conclusion.

 

[Swede]

Thank you for the comment, Clearwater AL. Yes, if the doctors were to conclude that this is something other than ALS, then I would accept that, as I did in 2017.