Health Anxiety or ALS - Synkinesis?

Status
Not open for further replies.

PeterPinecone

New member
Joined
Sep 27, 2011
Messages
1
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
Hello All,

First, thank you in advance for viewing this thread (whoever you are) and apologies if I am way off base.

Background:
In Feb 2021 I started having a tight, strange sensation in my right middle toe at night. This later progressed to my calf on the same side as well. Eventually, I started having this strange tight sensation in both legs and it spread to the thighs and quads. Most typically it would be in my left leg but occasionally on the right as well (80/20 most likely). Occasionally there would be twitching in the muscles in these areas included the feet, but it was not terribly common and easy enough to ignore. Occasionally I would get twitches in random parts of my upper body as well. Perceived weakness was also there. However as I had a newborn daughter I really didn't think about it too much despite how annoying it was.

In March 2021 I made the mistake of Googling the symptoms and landed on ALS. This set off what I can only describe as Health Anxiety and all that goes with it (compulsive body checking, googling symptoms, reassurance seeking, etc.).

In April 2021 I went to a neurologist who did a physical examination and saw nothing wrong with me but said for my peace of mind I could visit his colleague for an EMG which I did the following week. In between these visits the physical symptoms largely went away. When I visited the second neurologist she did an EMG and well as a NCS on my left leg and said after the EMG that I do not have a MND although there was maybe something in the NCS but nothing to worry about. I didn't receive the results/sheets etc. and just took her verbal assurance.

As with most health anxiety sufferers, I felt better after this and symptoms subsided - for a while. I started seeing a therapist and although I haven't started medication I have started CBT.

However I recently noticed a couple new things I am fighting with telling myself it is OK. Note: To fellow health anxiety readers out there who visit this forum, this is reassurance seeking and really should be avoided, let my mistake be a learning for you if possible.

1. I have noticed that the webbing and base of my thumb is sore - no other symptoms. I have largely made peace that this is from picking up my daughter.

2. I have noticed that my left inner ankle bone (that sticks out to the side) feels tight or strange. My fear I cannot get out of is that although sensations point away from ALS maybe a smaller muscle in the ankle or foot has atrophied and this feeling is some other muscle struggling to compensate?

3. I have noticed that on my left hand when I type on the computer, tap my fingers or knuckles on something hard, or even tap my left elbow/wrist/forearm/shoulder my upper right lip twitches in response. I work in IT so am constantly on the computer so this really is distracting since I can feel it most of the time. I understand from fearful Googling that this is indicative of Synkinesis which is brought about my reinnervation of a nerve after denervation - which I understand is a process that happens in ALS.

This third point has really sent me for a loop in a bad way. Is what I am describing something that would be exhibited in ALS at any stage? The second is my fear that the EMG done on my left leg may not be indicative/missed something on my upper body/around my mouth. As the forum title says, 'Could this be ALS...?'.

I have a GP appointment on Friday and will update then to hopefully close this out. Predictably this anxiety has caused muscle tension and twitching to come back in my left leg.

Thanks so much in advance for your knowledge as well as for making this venue available for people like me.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
10,279
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
You can't self-diagnose synkinesis. The "chain reaction" you describe is seen in a host of benign situations and frequently relates to fatigue and/or anxiety. Since you are in IT and have a newborn, you could probably use some longer walks and stretching morning and night to loosen things up. And of course sleep is always worth catching up on.

The EMG was not done too early and not done in the wrong places. The hallmark of ALS is that certain abnormal findings are widespread, including asymptomatic muscles.

I'm glad you're doing CBT but don't neglect the physical things you can do to settle things down.

Best,
Laurie
 
Status
Not open for further replies.
Top