ALS fear - on and off 5 years - scared again
I have been in an ALS fear zone on and off for about 5 years. 5 years ago I started with the typical symptoms of twitching and what I believed was weakness in my legs and hands. I went to two different neurologists and had two EMGs clearing me of ALS. I was so convinced that I had it that my neurologist sent me for MRIs, swallowing tests, etc. After all was cleared, I decided to see a professional therapist. It helped and I was able to stop obsessing. Fast forward 5 years....
Well, about a month ago my ALS fears started coming back. I started having a weird feeling in my hand especially in my thumb. It feels like I am having dexterity issues. My thumb doesn't feel like my own. So, like I did in the past I started self testing. I started picking up coins, screws, and even bought a dexterity test to manipulate little rods into holes. I have been able to do all of it with no problem, but the thumb feeling remains. Around a week later the twitching returned, and has settled in my calves non stop almost for a month now, small pops happen.
I'm worried every day and can't stop thinking about ALS. I'm on forums and reading ALS stories trying to relate symptoms to my own.
It was very time consuming and expensive the first time around to get all the testing completed. I went on the ALS forum and posted again.
I was told not to worry about it cause in the 5 years if it was ALS I would have been fully compromised. I'm just wondering if ALS has been laying dormant and is finally coming full on and if its just a matter of time before the failures start coming.
I appreciate anyone's point of view and for reading this post. Take care.
Re: ALS fear - on and off 5 years - scared again
Quote:
Originally Posted by
Rise1220
I have been in an ALS fear zone on and off for about 5 years. 5 years ago I started with the typical symptoms of twitching and what I believed was weakness in my legs and hands. I went to two different neurologists and had two EMGs clearing me of ALS. I was so convinced that I had it that my neurologist sent me for MRIs, swallowing tests, etc. After all was cleared, I decided to see a professional therapist. It helped and I was able to stop obsessing. Fast forward 5 years....
Well, about a month ago my ALS fears started coming back. I started having a weird feeling in my hand especially in my thumb. It feels like I am having dexterity issues. My thumb doesn't feel like my own. So, like I did in the past I started self testing. I started picking up coins, screws, and even bought a dexterity test to manipulate little rods into holes. I have been able to do all of it with no problem, but the thumb feeling remains. Around a week later the twitching returned, and has settled in my calves non stop almost for a month now, small pops happen.
I'm worried every day and can't stop thinking about ALS. I'm on forums and reading ALS stories trying to relate symptoms to my own.
It was very time consuming and expensive the first time around to get all the testing completed. I went on the ALS forum and posted again.
I was told not to worry about it cause in the 5 years if it was ALS I would have been fully compromised. I'm just wondering if ALS has been laying dormant and is finally coming full on and if its just a matter of time before the failures start coming.
I appreciate anyone's point of view and for reading this post. Take care.
With all due respect, knowing the ALS rabbit hole is deep.... Something I posted to another member recently...
Quote:
Originally Posted by
Fishmanpa
In the time I've been participating on the forum, not one ALS/MND/MS fear has come to fruition.
Not. One. Many here have also posted their fears on the ALS forums only to be told to seek professional help. In fact, the main ALS forum refers HAers to this site!
A reply to a member here....
"You need to get help, and evidently not from us. No More Panic is one place to start if you're not ready to see someone on your own. Please do not start another thread here-- it wouldn't be healthy for you."
I hope you as well as the dozens of others here read this and seek help for the real issue.
Please do not bother the people on the ALS website (or other serious illness sites) with your irrationality.
FMP
Re: ALS fear - on and off 5 years - scared again
FMP, I can appreciate the reply. It is hard to come to terms with issues when you know what you are feeling on a daily basis. The biggest difference this time around is that I am wanting to talk about it openly. I hid alot from my family particularly my wife the last time. It took many months before I could admit that I needed help. I am trying to catch myself before I really go down the road again even though by posting here I might already be at that stage. I want to keep talking about my fears and hopefully get resolution with the help of this forum if it's possible.
Re: ALS fear - on and off 5 years - scared again
Hi..... I’m in the hole with you, waving at you in the darkness. I’ve also had this fear on and off for years. Neurologist visits etc.
This particular bout was also triggered about a month ago when I was trying to peg out washing after being out in the cold for a long time. My right hand had lost all strength. I felt an immediate spike of fear and even though my hand worked again as soon as it warmed up, the fear didn’t go. So then other symptoms began. The twitching, little pops all over, and weird feelings of clumsiness or stiffness in my fingers (which I can’t actually pin down because my strength and dexterity tests are all normal). I also think I am walking strangely even though I am told I am not. I feel like my left foot is a bit slower to pick up off the floor. Even though I can still easily walk on tip toes and heels. It is so so odd, the things our brains can do.
So I know what you are feeling.
Re: ALS fear - on and off 5 years - scared again
Re: ALS fear - on and off 5 years - scared again
Rise... Since you've been on the ALS forum, you're probably familiar with the Sticky at the top of the page as it's a 'READ BEFORE POSTING' sticky there.
This part applies....
Clinical Weakness—ALS is about failing, not feeling.
ALS is about failure—falling down, being unable to stand on your toes, being unable to button your shirt, being unable to lift your hand, etc. It is not about these things becoming more difficult. It is about these things being impossible… no matter how hard you try. If you can do normal things, but it is more difficult, you do not have ALS. If you used to be able to do 100 curls and now one arm can only do 50; that is not ALS. If you used to run 2 miles and now you can only run 1; that is not ALS. If you used to run 2 miles and now you can’t lift up one of your feet, you may have clinical weakness.
It really does happen that something stops working all of a sudden. It is generally one muscle so it will not be a whole limb but the movement done by that muscle is suddenly gone. An example is a calf raise. It won't happen. Think of it like your wifi signal. You are surfing the net, then signal is lost and you can't do anything online no matter how hard you try or how long you wait for a page to load. This is what happens to a muscle in beginning ALS it has lost the signal from the nervous system that tells it to work.
You posted this....
Quote:
Originally Posted by
Rise1220
I started having a weird feeling in my hand especially in my thumb. It feels like I am having dexterity issues. My thumb doesn't feel like my own. So, like I did in the past I started self testing. I started picking up coins, screws, and even bought a dexterity test to manipulate little rods into holes. I have been able to do all of it with no problem, but the thumb feeling remains.
You wouldn't be able to do any of the things you've done if it were ALS. Thing is, I truly believe deep down you know this thus the reason you're on an anxiety site. Just like 5 years ago, seeking real life professional help for the real issue will be the best course of action.
If you've done any reading here, you have the solace in knowing that you're not alone in your fears and struggles but again, I believe deep down you know what the real issue is and just can't find a way to put the dragon back in his cave.
I hope you find some peace with this.
Positive thoughts
Re: ALS fear - on and off 5 years - scared again
Jojo, its a weird feeling for sure when your body starts doing things you are not accustomed to and you immediately jump on the internet for answers. I tend to always go worst case scenario with all issues and my anxiety takes off. It is really really difficult for me to admit it is anxiety, probably more than anything cause I think it makes me sound crazy or it makes what is happening to me not real. I am super self aware of what is going on in my body and know what I am feeling as I'm sure you do as well. I'm glad to have found this forum to open up about what is going on. It is starting to help.
FMP, I was reading that sticky every morning after I did self testing to reassure myself that I was ok for that day. It has been a never ending cycle of self testing. I feel one thing that feels off and I immediately self test or start to think to myself, well here is the start of the downhill spiral of muscle loss. It's nerve racking and I'm tired, exhausted actually.
I have been doing grip training on and off for years. I actually got into it when all this started happening 5 years ago as a way to self test. I actually enjoyed it alot and kept doing it as therapy. I have started it again and my strength for grip is at the same level it was before and even stronger in one of the hand grip exercises. However, my head goes into a vicious cycle and says, well it might be stronger today, but tomorrow it will start the weakening process and you won't be able to grip as much.
In the end I searched out ALS and have focused on it to the point of nausea. I think it explains what is going on with me and I start self testing to get through another day. Like I said above it's a vicious cycle that I'm working hard to break free from and discussing it on here is a start. I have given myself a time line to seek professional help and if I can't get it under control I will have to move forward with that plan. I am hoping openly discussing with you all can help me cope.
Re: ALS fear - on and off 5 years - scared again
Hope everyone is doing well. I've had some better days since my last post, but then a day like today overwhelms me with fear again. I went for a 3 mile run last night and felt accomplished afterwards. Today I get up and my toe next to my big toe on my right foot feels like its dragging. Well I go into the kitchen this evening and I trip on the carpet by the sink. My head immediately goes into overdrive and the twitching that has been there consistently for about 2 months is now popping like crazy. I'm trying to get out of my head, but with my hand still feeling awkward and I'm just waiting in my head for the next issue to arise.
I appreciate anyone who reads this as it is reassuring to get these things off my chest.
