dwaynehicks

Another ALS worrier - going insane

Recommended Posts

Hello all,

first of I would like to thank everyone who will take time to read my story and reply. You have no idea how much it means.

Late December I woke up with my left arm numb with very weird dull pain. At the beginning I thought I slept on it after night of drinking. Since no painkillers I visited orthopedist and started doing physiotherapy which helped a little. 

However after that painless weakness remained for several weeks I decided to visit other orthopedist and also neurologist. The second orthopedist ruled out shoulder impingement and neurologist did some basic clinical testing and to my question he said its not ALS. But he sent me to other neurologist to do NCS and EMG testing (end of January). He poked 4 muscles in my left arm which showed no major active nor chronic denervation / reinnervation and even asked why do i fear of it (i replied cos of painless weakness). Kind people on the ALSforum told me it is not the dreaded disease since the neuro cleared me, had clean EMG and asked me not to come back. My fears remained though. 

Weeks later in February my muscles in my legs (foot arches and calves) started twitching. I visited psychiatrist as per recommendation of my family and started doing CBT but so far with no improvement. During March I went to Thailand to visit my friends who were vacating there. No crazy partying, I thought it will help to relief my stress but one day I started feeling weak also in my left leg. Also couple of days later, I woke up and my shoulder muscle twitched for like half hour constantly. I shortened my trip, since I also had some nightmares and visited the psychiatrist who prescribed Cipralex. Currently I had second half of the first pill (he said first five days 0.5pill, later on full pill). 

I am 34 years old, male. My muscles in my legs twitch couple of times a day, especially calves and foot. From time to time also some quick muscle jerks randomly in different areas of my body (stomach, arm, thighs). Last couple of days I have trouble falling asleep due to these twitches. I understand that fasciculations and perceived weakness (since I tried running and I have no clinical weakness) are common with health anxiety, but my mind is always saying the damned "what if" question since the neurologist tested only 4 muscles in my left arm (where I have no fasciculations) and there are cases with clean EMG. At this point I am very very scared to see another neurologist or neuromuscular specialist, my psychiatrist did not even recommend to see one actually. I also stopped exercising since it seems it increases the muscle twitching. 


So the question is, if anyone can relate. I understand no diagnosis can be done via the internet but I cant think about anything else every second during the day. I dont enjoy anything what used to like before (watching movie, reading, excercising) since every time I try to think about something else, the jerks bring me back to anxiety state. I do understand I have health anxiety (in november/december i was diagnosed with acid reflux and I feared of throat or pancreatic cancer), however I fear of the crywolf scenario (that this time it is actually something serious). My logical mind tells me this was triggered by my friends funeral who passed away early in January from gastric cancer (I do not usually go to funerals since when I was 7 my 2 year old brother passed away from heart disease). 

I had big plans for 2022, registered for triathlon in summer, I just miss my oldself and hope to wake up one day that this was all just bad dream. Any thoughts are highly appreciated.

 

 

 

Share this post


Link to post
Share on other sites

I have responded to a number of posts about ALS as I had to watch my brother die from it.  

I'll make 3 points-

1- ALS is extremely rare.  I understand that while true, but people get it. Even rarer yet are cases of clean EMG's turning out to be wrong. It almost never happens. When it does it is generally a specific type of ALS that presents unique symptoms (that you will certainly get if I tell you).  
2- Twitches are part of life.  Everyone gets them.  And as your stress level increases you are far more prone to them.  I have pretty chronic twitches.  I dealt with one in my abs for months.  In ALS, the twitches are very much unlike what you see.
3- ALS is a disease of CAN'T, not FEEL.  You just lose the ability to use the muscle.  This progression is rapid.  So if it were starting in your arm, you would see atrophy and REAL muscle weakness, not perceived weakness.  

Share this post


Link to post
Share on other sites

Thanks trainwreck for your reply. I am sorry for your loss. 
 

I really hope that you are right, altough today I woke up and today my right deltoid was twitching. 

From my research, I am really not sure if twitches from the disease and twitches from anxiety and stress actually are different. And I am really not sure if the perceived weakness in my left leg is not real one. I guess time will show. I am scared sh*tless.

Share this post


Link to post
Share on other sites

Also my worry is not very comprehensive EMG (4 muscles), however I understand my symptomatic limb at the time was just my left arm (now also left leg).

Share this post


Link to post
Share on other sites

My friend, listen carefully because there's only one way out of this hell of a rabbit hole. The more you search for information about the disease, the more you pay attention to your twitches, the more you test you strength, the more you compare your limbs against each other to find atrophy, THE MORE YOU FEED THE MADNESS. 

You have to let go of all that. Ignoring symptoms is enormously difficult but there's no way around it. I'm into 5 years with that ALS folly and I know what works and what don't. What you're doing up to this point won't do, trust me. 

ALS is not the kind of malady that can be cured if spotted early. You have a clean EMG and no clinical weakness so you most likely don't have it, but rest assured that you can ruin your life with this looping obsession as efficiently as if you really had it. 

Don't let a fear rob you if your life. 

Share this post


Link to post
Share on other sites

Thanks Zencube

you are 100% right, thats why i started taking cipralex since i came to a point where i have realized that i cant do it without help/medication/just by myself.

not paying attention to twitches is obviously the hardest, due to that i have stopped working out (since it makes it worse i believe).

Share this post


Link to post
Share on other sites
16 hours ago, dwaynehicks said:

Thanks Zencube

you are 100% right, thats why i started taking cipralex since i came to a point where i have realized that i cant do it without help/medication/just by myself.

not paying attention to twitches is obviously the hardest, due to that i have stopped working out (since it makes it worse i believe).

Jumping onto the opportunity to firmly advise you against stopping sport. 

To overcome anxiety I, also, stopped going to the gym in fear I would notice a decrease in muscular performance. Going under the bar or grasping at dumbells had become a topic of nervous anticipation, to such an extent I quit the sport altogether. Turned to benzos, morphine, alcohol, all that crap, which was a poor option to say the least. 

Then came the point where I had to choose between getting buried alive or react. I studied physiology and came to the conclusion natural endorphins where the high end stuff to keep panic at bay. Bought a diamond sharp road bike and started hammering miles, up to 15 a day, preferably at night time when the roads are smooth and empty. 

Let me tell you it saved my life, literally.

Share this post


Link to post
Share on other sites

I run 5 miles three times a week.  Exercise is CRUCIAL to health!!!!

Share this post


Link to post
Share on other sites

My friends wife passed away of ALS in December 2020 at age 62 and she had no twitching. 

Share this post


Link to post
Share on other sites

I really appreciate everyones response.

it is very difficult time for me, since i understand that left leg weakness and sensation can be sciatica, twitching can be anxiety and arm weakness (where the emg was done) can be perceived.

last 3 months have been hell to me and i was told that cipralex might take time to show effect, i am hoping it will help in next couple of weeks

Share this post


Link to post
Share on other sites

same here bro l have been having weakness in my right leg

 

Share this post


Link to post
Share on other sites

Hi. I'm a 37 year old mom of 2 (8 & 14) I'm lost in the ALS rabbit hole right now as well. I went to the doc for leg stiffness and a multitude of other things. They want to get my anxiety under control first so started me on meds, but my muscle twitching has become worse, waking me up at night, and its all over my body, though really likes to happen in the leg I've been having problems with.  5 days after my appointment I came down with covid for the 2nd time. My anxiety is through the roof, I can't eat (haven't had much more than a couple bites in days) my legs are cramping (both now) and twitching feels like it's everywhere. I am convinced it's ALS, since my blood work all just came back clean. My anxiety is through the roof, and I'm having breakdowns several times a day as I think of having to leave my children. My daughter is scared something is wrong and has heard me loose it to my husband. She came to me crying because she doesn't want me to go to Heaven yet. This is gutting me. I want so bad to get better. I hate this and the complete and total fear I have of this being ALS is crushing me. I have a follow up with the doctor in 2 weeks, but have a note in for a phone call tomorrow about my labs and fears. I don't know what to do. It just breaks my heart to think of having to leave them and not being here as they grow up. We are so very close. I feel like I'm losing my mind. I feel broken. I just don't know how to deal or what to do. I've never posted on a forum before so if I'm going about this wrong I'm so sorry. 

 

Share this post


Link to post
Share on other sites
9 minutes ago, Momof2 said:

Hi. I'm a 37 year old mom of 2 (8 & 14) I'm lost in the ALS rabbit hole right now as well. I went to the doc for leg stiffness and a multitude of other things. They want to get my anxiety under control first so started me on meds, but my muscle twitching has become worse, waking me up at night, and its all over my body, though really likes to happen in the leg I've been having problems with.  5 days after my appointment I came down with covid for the 2nd time. My anxiety is through the roof, I can't eat (haven't had much more than a couple bites in days) my legs are cramping (both now) and twitching feels like it's everywhere. I am convinced it's ALS, since my blood work all just came back clean. My anxiety is through the roof, and I'm having breakdowns several times a day as I think of having to leave my children. My daughter is scared something is wrong and has heard me loose it to my husband. She came to me crying because she doesn't want me to go to Heaven yet. This is gutting me. I want so bad to get better. I hate this and the complete and total fear I have of this being ALS is crushing me. I have a follow up with the doctor in 2 weeks, but have a note in for a phone call tomorrow about my labs and fears. I don't know what to do. It just breaks my heart to think of having to leave them and not being here as they grow up. We are so very close. I feel like I'm losing my mind. I feel broken. I just don't know how to deal or what to do. I've never posted on a forum before so if I'm going about this wrong I'm so sorry. 

 

Are you getting enough vitamins and hydration?  Muscle issues could be a need for magnesium or something.  The nerves themselves are made worse with the increasing anxiety.  Your tests came bsack normal, but you aren't convinced.  You have to see things the way they are and what you think they are.  It's tough to do, but you have to think about how much you are reacting.  

Share this post


Link to post
Share on other sites
13 minutes ago, Ironman said:

Are you getting enough vitamins and hydration?  Muscle issues could be a need for magnesium or something.  The nerves themselves are made worse with the increasing anxiety.  Your tests came bsack normal, but you aren't convinced.  You have to see things the way they are and what you think they are.  It's tough to do, but you have to think about how much you are reacting.  

According to my blood work my numbers were fine (this was done 2 days ago). They tested for nutritional deficiency, thyroid, A1C, and inflammation markers. Everything was normal. They didn't test magnesium though, so maybe I should ask about that. I want so hard to believe that it's all my anxiety. This last year has been hell for that. A year ago I got bells palsy, at the same time my husband went into AFib randomly, as we are both dealing with these 2 things we also came down with covid. We were hit pretty hard and at one point he passed out on me and I had to take him to the ER. I developed long covid that attacked my gut and I couldn't eat much for almost 2 months, during that time our house was hit by a tornado (no damage at that point thankfully) and our fridge went out (because why not) About the time I was getting over it my husband had his heart shocked back into rhythm and 2 days later woke me up in excruciating pain and I took him in to the ER for what we thought was kidney stones. Turned out it was kidney clots and he was ambulanced to a bigger hospital to be treated. I was told there it was a miracle that the clots went to his kidneys instead of brain... I could have lost him. A month later our dog got sick and died. These are just a few of the stressors of the last year. I started having shoulder pain due to my job and developed some nerve damage in my face after bells. Everything Keeps happening on my left side. I don't know what is going on. It's so frustrating, and one of the reasons I am fearful of ALS.

Share this post


Link to post
Share on other sites
35 minutes ago, Momof2 said:

According to my blood work my numbers were fine (this was done 2 days ago). They tested for nutritional deficiency, thyroid, A1C, and inflammation markers. Everything was normal. They didn't test magnesium though, so maybe I should ask about that. I want so hard to believe that it's all my anxiety. This last year has been hell for that. A year ago I got bells palsy, at the same time my husband went into AFib randomly, as we are both dealing with these 2 things we also came down with covid. We were hit pretty hard and at one point he passed out on me and I had to take him to the ER. I developed long covid that attacked my gut and I couldn't eat much for almost 2 months, during that time our house was hit by a tornado (no damage at that point thankfully) and our fridge went out (because why not) About the time I was getting over it my husband had his heart shocked back into rhythm and 2 days later woke me up in excruciating pain and I took him in to the ER for what we thought was kidney stones. Turned out it was kidney clots and he was ambulanced to a bigger hospital to be treated. I was told there it was a miracle that the clots went to his kidneys instead of brain... I could have lost him. A month later our dog got sick and died. These are just a few of the stressors of the last year. I started having shoulder pain due to my job and developed some nerve damage in my face after bells. Everything Keeps happening on my left side. I don't know what is going on. It's so frustrating, and one of the reasons I am fearful of ALS.

That's a LOT of stressors, which would make it that much easier for anxiety to take hold.  My latrest issues haven't been to that extreme, but the anxiety came back a bit despite my meds.  I had to learn to manage it to keep from having to go up in dosage (I have been on meds for 18 years at various levels, worst at the beginning). It's a daily grind to get through, but learning how to process our thoughts so we aren't overreacting as much ends up being an advantage.

  • Like 1

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.