ALS Anxiety

[Heatti]

Hi - I’m sorry to even ask this of your time but I have done something really stupid and I don’t know if it is from doing this or if it is ALS. I am a 50 yr old female. The stupid thing I have done is self test my hand for strength. I don’t mean one time but seriously throughout the day, sometimes unaware I am doing it. People point it out to me. Now what has happened is my left hand in the morning, I awake with it stiff and I have to move my fingers around to loosen it up - Fear #1 - Stiffness with ALS. Then I test my fingers by spreading apart and pushing down on each one (something I have seen my neuro do many times). My pincer grasp is strong but my ring and pinky fingers not so much. I also do the spread fingers out and have someone push the fingers together. They can close my pinky and ring finger pretty easily. All this testing has now led me down the path of my top hand hurting, my forearm hurting/burning, and still I am none the wiser of my strength dexterity - Fear #2 - Clinical Weakness and Forearm burning. I am going to preface this that I have read your explanation of weakness defined as failure. I don’t think I have failure per say but every morning I wake up to a panic because my hand is stiff and does this precede weakness?

I would be eternally grateful if you all would provide feedback even if it is “Heather, you are being ridiculous, go live life”. I just have high anxiety because my fiancé passed away at the age of 26 from this and his happened with a foot drop and not in the hands. His neurologist told me that forearm pain is not out of the norm so of course my head is spinning. Would you mind sharing your thoughts? I also had a normal EMG in September 2021 but that has been awhile.

P.S. my top of shoulder, shoulder blade and neck have tender spots. Maybe a pinched nerve and not ALS related 😞? I also am a twitcher but have been already years ago diagnosed with BFS.

Again, thank you incredibly much for your time. All my prayers, positive vibes, to all who are either a PALS or CALS. Your willingness to help is awe inspiring 💗

 

[lgelb]

I'm very sorry about your fiancée. I don't think you have anything to worry about as regards ALS, but your primary care doc is best equipped to baseline and track your strength. Many of us wake up a bit stiff and stretches in the morning are very helpful. Shoulder and neck tender spots are also very common, especially when you are anxious or focusing on your body. Making sure you are moving throughout the day and doing something you enjoy at some point before bed is also of benefit.

Best,
Laurie

 

[affected]

I'm so sorry for your loss, and that you have experienced being a CALS and looking after someone you loved through to the end.

Now to your current situation - you cannot test yourself, you simply cannot and it sounds like you are injuring yourself. That is dangerous.
What you are feeling is not the precursor to clinical weakness. It is the difference between feeling weak and being weak.
I hope you can talk openly with your doctors about all of this so you can be helped.
Please get help to let this go - a fear of ALS is common after watching someone die from it and it can be treated very successfully.

 

[Heatti]

Hi - can I please have someone be so kind and give me some feedback on this. I went to my double board certified neurologist who happens to be an ALS specialist. I went with my notes of mainly saying I have left hand stiffness every morning to where I have to move my fingers and new symptom after I saw him was right upper forearm burning. He did my clinical and said quietly you don’t have ALS. He was even smiling through it all.

I walked out of there feeling relieved but then was retriggered by someone posting on my Benign Fasciculation Syndrome group that he was just diagnosed with MND/ALS and yet he kept saying he didn’t have failure just couldn’t lift a jug of milk as high as he used to. He said he has stiff fingers his thumb and 2nd finger which put me into a deep depression like maybe my neuro missed it. My neuro didn’t even offer to do the EMG and said see you in a year. I have been seeing my neuro since 2004 because I have a benign brain tumor so he knows my body well. Why can’t I believe him?? The reason I believe people who have ALS or cared for a person is because they lived this disease just not went to med school. I’m sorry I am wasting your time and I do appreciate all your feedback even if it is to tell me to get therapy and trust me I am. Much love and prayers to you all 🙏🏻💗

 

[affected]

I'm glad you went to a reliable neuromuscular specialist.
I can assure you that the person who couldn't lift the milk jug had clinical weakness which prompted further testing.
You did not.
That is the huge difference.
I hope you can get past this fear soon so that ALS does not hold a shadow over your own life. All the best.

 

[Clearwater AL]

Heatti, key sentences from your Thread…

“I went to my double board certified neurologist who happens to be an ALS specialist.”

*Good.

“He did my clinical and said quietly you don’t have ALS. He was even smiling through it all.”

*Maybe he was smiling because you showed no signs of ALS.

“I have been seeing my neuro since 2004 because I have a benign brain tumor so he knows my body well.”
“My neuro didn’t even offer to do the EMG and said see you in a year. (Knows my body well)

*When he said see you in a year… just covering his legal butt.

Very very few of us PALS have had Neuro care for nearly 20 years. If any. Maybe a few FALS.
Much much less the same one.

I have no idea what it will take for you to let go of ALS. Golly.

I hope you can get help for your Health Anxiety.

 

[Heatti]

Thank you both Affected and Clearwater AL for your responses. Oh how I wish I could find a therapist who could work with me on my Health Anxiety. I have been to so many in the Tampa Bay Area and they all make the promise of help and come to find out I am the first person they have treated. I do appreciate your feedback. It is so disheartening that I live like I have a terminal disease and can’t cope and look at all of you living life and providing such a kind service to help people like me. You truly are special people and the world is a better place with you in it. Again thank you is not enough to convey my appreciation and gratitude but it is all I have to offer.

Fondly,
Heather

 

[lgelb]

Heather, telemental health is another option if the help you need is hard to access locally. There are several good networks on line (one I know of, e-psychiatry, is a client of a client) where you can find help for health anxiety; you are not confined to Tampa.

All the best.

 

[Clearwater AL]

Heather, I am familiar with the Tampa Bay area, Clearwater, St. Pete,
is a huge metropolis, most of my family is down there. How it happened
is very unusual that you found you are the first person they have treated.
Even with that… they’ve had training to do that job which could
have been helpful.

Please believe what you have been told by our extremely ALS
knowledgeable members and your Neuro has assured you don’t
have ALS.

Yes, Health Anxiety is tough but a lot of it can start with you which
a therapist will start with. I hope you get the help you seek.

Until then… try real hard to believe what you have been told. For
your own self help/mental health… sign off from this site and
avoid Dr. Google.