21 Months into Body Wide Twitching - Still not diagnosed with ALS

[Kinabe]

Hello again. I hope this is my final post.

I wanted to update everyone with what has been going on. I continue to have the same body-wide twitching that I have been experiencing since January 2019. I twitch many times per day, and nearly constantly in both foot arches. I also experience a lot of pain, stiffness and other sensory issues. My life changes forever in January '19 and has never been the same since.

I previously posted initially and at my 6.5 months. This is a further update for anyone who has followed my journey with these symptoms.

I had a clinical exam which found nothing eventful at 3 months in.
I posted at that time.

I did not have an EMG until 11 months, when I requested one, hoping to find closure. The EMG was uneventful, and it abated my concerns for a while, but it never totally satisfied my fear.

During that visit, the Neurologist recommended an MRI to search for other causes. He also indicated that he could examine my MRI for "subtle early changes related to ALS/MND." Apparently there is research demonstrating that an MRI can be used to check for subtle pre-clinical changes in the spinal cord.

Due to COVID-19 and the fact that I live in a remote area, I have still not had that MRI, but I hope to have one soon.

I am attempting to defeat my health anxiety. The anxiety actually got worse with time, because I had hoped if it was benign that it would eventually stop. When symptoms continued on indefinitely, the anxiety monster began to creep in again, telling me I was certainly a rare and exceptionally slow progressive case.

I post this here because I hope others will read this and understand that their journey may be very long. They may never find the direct cause of their twitching. I am 21 months into this and there is still no answer for why I battle these twitches and related sensory/pain issues. No one here can definitively diagnose you or tell you what is happening. You have to rely on your doctor and you have to know that this process can be extremely long. I never dreamed it would take 21 months and still not have definitive answers.

I now try my best to accept that for me to suddenly have an ALS onset after 21 months of this is extremely unlikely. Especially with an EMG 11 months in, which almost certainly would have detected changes at that time. Since nothing has changed even 10 months after the EMG, this only gives more evidence that nothing ALS/MND related is taking place.

I have attached my EMG explanation for anyone who is curious.

Please try to control your anxiety and work with your physician to find a cause. The overwhelming vast majority of people who come to this forum will not be diagnosed with ALS.

I welcome any comments from the moderators who do a fantastic job assisting people here.
I also welcome any thoughts on any further avenues I could take on my journey of trying to find out what this is.

 

[ShiftKicker]

Past posts here for folk who wish:

Waiting on Neuro, scared.

Hi, Thank you in advance for your time. I've read many of the posts here and I am in a similar situation. My grandmother died at age 76 from ALS, and it has given me a lot of anxiety over the past 10 years related to it. I also had a more distant relative (a cousin of my father) who I believe...

www.alsforums.com

Update 6.5 Months into Twitching

My old was closed, I believe due to inactivity. It has been close to 18 weeks since my Clinical Exam. I am still experiencing fasciculations daily, which are widespread. Nearly every area of my body has had fasciculations for at least a few days at some point in this journey. It has been 6.5...

www.alsforums.com

Thanks for returning to update.

It really is so hard for internet strangers, even those involved in the medical field, to speculate about possible causes for issues. With covid and your remote location, things must seem doubly difficult to get answers, so I understand your temptation to ask folk on this forum for further reassurance. I am not sure a forum dedicated to those with ALS and their caregivers is a good place to crowdsource possible causes for your symptoms though- the will to help may be here, but actual ability might be a bit difficult. It sounds like you're getting some support for health anxiety, which is excellent self care- and in no way means a dismissal of your concerns for physical issues. Many people find it helpful to have someone walk with them through search for diagnosis to provide support in a stressful time. I am hoping you continue to do so while you wait for your MRI.

 

[lgelb]

The title of your post is perhaps the most revealing piece of information here. "Still Not Diagnosed" suggests that you expect that is still possible, with all the evidence against, from a normal EMG to a lack of progression in motor dysfunction, as well as sensory symptoms not associated with ALS onset. It also suggests that you ultimately expect to be diagnosed with "something" and 21 months in, that seems like a low probability bet, though not impossible.

So I concur that continuing to treat your anxiety will be the most effective therapy you could have overall, a statement that is true for many in this subforum. The anxiety isn't just "do I have ALS" but "what do I have" and often the answer is, nothing more serious than health anxiety. You do not say whether you are getting counseling for the anxiety; I hope you do if you need it, as that is a condition that self-care doesn't always work for long-term.

Thanks for stopping by with your update.

Best,
Laurie

 

[Kinabe]

I'm sorry the title was taken that way. I actually meant it as a more positive note - that despite twitching every day for that long of time, it hasn't progressed to a point where ALS is suspected.

People are so afraid of their twitching. I myself am still scared some days. But the good news is that a person can twitch for this long (and longer) but still never be diagnosed with ALS.

I do believe *something* is causing my health problem. I don't know what that is. I hope to someday find a definitive answer, but that may never happen. The BFS forums online can be helpful for anyone dealing with long term twitching problems. There are others on those forums who are in longer than I am, and sill have no progression to ALS. You all have said it many times, and its hard for many of us to believe it, but twitching truly is "meaningless in the absence of muscle function failure." Is it possible that I could go on to ALS? I guess nothing is impossible, but at this point it would be an exceedingly rare instance of an already rare disease.

Thank you all for your support and insight. My biggest regret is not getting health anxiety treatment from the beginning.

 

[Bestfriends14]

Thank you, Kinabe, for updating. It's an important step in getting better when you recognize that your fear of a disease can actually be health anxiety related. There are many, many, many folks on the "Could I have" forum that sadly are never able to see this. They post relentless questions in an almost frantic manner, disbelieving what folks here say and their doctors tell them. They argue with this symptom and that symptom, none of it relating to ALS. I have seen it a hundred times.

Self reflection, such as you have done, and recognising that counselling could be a better path to feeling well, is winning half the battle. Good for you; you should be proud of yourself.

I wish you well; please have faith in yourself that with counselling, you can lead a more productive life that is not centered around your health anxiety.

Good luck and please take care.