Feeling defeated and worried

[Cleary2349]

Hello all,
I have been experiencing some symptoms that are concerning me. I seem to have gone down the path of researching ALS, like many other on this thread.

I am 33 years old and have two young children. Close to 20 months ago I started to have some issues with my hands. Initially I felt like it was due to typing so much at work but I started to get really anxious about it. I went to the doctor and she prescribed me Lexapro and I started taking it immediately. Fast forward a couple of months, I started to get some muscle twitches. I would have a repetitive twitch in my arms for a few seconds and then later in the day feel one in my leg and and soon all over my body. The issues wirh my hands resolved. I really tried to keep my anxiety at bay and thought maybe it was a side effect of the medication, so I ignored it. Within a week or two the twitching had escalated and it was happening everywhere all the time. I went back to the doctor and weaned off the Lexapro to see if the twitching stopped. It never did.

Over the past 18 months I have been dealing with widespread twitching. When I saw widespread, I mean from my toes to my ears. However, its substantially worse in my arms, legs, torso, and back. These twitches are like 20-30 "pops" in a muscle at almost every period of the day.

I have a neurosurgeon that removed an AVM in my brain, and he was not really concerned. He specialized in endovascular so it wasn't really his thing. I've had tons of CT scans and MRIs on my brain. I had a craniotomy less than a year ago. He could say that it had nothing to do with the AVM or the surgery. My PCP chalked it up to anxiety because I did score very high on the GAD scale.

I had researched ALS and gotten worked up about it but so much time had passed that I felt like it couldn't be ALS. Now for the last two months, my anxiety has returned. The issues with my hands have started again. Starting with a twitch in my right hand that lasted for weeks. This was on the ulnar side of my hand. Then it seemed to have spread to the thenar side of my hand and when I pinch something or use my fingers to grab something, it just ripples wirh twitches. Then I started to have ulnar nerve spasms where it would contrast and not let go. Now I seem to just be having a lot of random twitching in that hand and a stretching feeling between my thumb and index finger. Also, my hand feels weak and if I use it to much the twitching goes crazy.

I of course got back on the internet and started to think about ALS. My twitching seems to be out of control and the twitches seem different. They are more rapid and almost feel like a long contraction of the muscle. Before it would be "pop, pop, pop" and now it seems to be very quick and then it almost feels like it gets stuck". I have also been experiencing twitching in my tongue. Sometimes I will lay down and just count how many times I get these twitches and I always exceed 50 in a ten minute period.

For the last few weeks my thigh has felt tired. Also on my right side. I know this is a random spot, but it feels like I just ran a marathon. When I sit down it's worse. It's not painful, but it feels like the muscle is tight and contracted and won't let go. I have also been biting my tongue in my sleep. I bit it three seperate times the other night. Also, experiencing what I believe are myoclonic jerks. When I fall sleep my body just jerks and wakes me right back up. Sometimes this happens over and over.

I went back to my PCP. I didn't bring up what I feared. She referred me to a neurologist and gave me some more anxiety medication and a muscle relaxer. I am currently waiting to get into them to see what they think, but I'm a mess. Does this sound like the beginning of ALS. I know I've had the twitching for quite something but I've read a few posts of people who had the for years before onset. I know that no one hear can give me the answers that I'm looking for, but I'm feeling really lost and alone.

Thank you.

 

[lgelb]

No, it does not sound like ALS. Tbh, I would think about counseling before more anxiety meds, which have their own side effects especially combined with a muscle relaxant. I would also ask about a sleep study, to rule out movement disorders as a cause for the jerking.

With young kids, you are using your hands a lot and repetitive motion injury is very common, as are weird positions and stretches that can strain a muscle or two. This would be especially likely if your sleep is disturbed.

 

[Cleary2349]

That is a possibility. Thank you for the reply. I am worried that my hand twitches more than I realize because I can't always feel it. When I pay close attention I can see all the fine little twitches that I can feel. I'm definitely in my head about it.

 

[Cleary2349]

I have been trying to talk myself down and I feel like as soon as I do, some other symptom pops up. The right feeling in my thigh has progressed to painful cramps that happen randomly throughout the day. I am also experiencing cramps on the entire right side of my body. These are painful and in my feet, legs, hands and abdomen. For some reason it seems to be all on the right side. I have also noticed the last few nights I have a feeling that I need to urinate, even right after I went.

I have an appointment with a neurologist at the end of January, but I feel like I can stay in limbo like this. It's making me crazy.

 

[lgelb]

Again, problems all on one side can easily relate to positioning in sleep (or while doing something else). Check your posture and mattress, chairs, seats, sofa, etc.

While you wait for the neuro appointment, you could be doing a sleep study at home, or starting with a wearable to track your sleep stages/restlessness (which can also relate to incomplete emptying or the feeling thereof).

 

[Cleary2349]

Do you think that it makes sense with the widespread fasculations? My thigh just felt so weird and now still feels weird with painful cramps. Would ALS affect one side like that? My hand has not gotten any better. The cramping tonight seems to bounce around pretty rapidly.

I do wear an Apple Watch some nights. I don't seem to get much REM sleep. Honestly, my anxiety keeps me up quite a bit. I want to believe that Anxiety is to blame here but feel like there is just too much adding up.

 

[lgelb]

No, the reason I suggest other causes of your issues is that ALS does not cause cramps that bounce around, etc. as you describe. Widespread fascics also argue against it.

Anxiety and reduced/fragmented sleep are pretty much a recipe for physical issues' becoming more prominent. As anxiety ramps up, so do physical manifestations, which in turn amp up your vigilance...and we do not function very well on too little deep and/or REM sleep.

Whether there is something else treatable or not, no harm to try things to break the cycle: counseling, sleep, doing things during the day that test you mentally and physically to help build your confidence back up, to help you deal and make good decisions.

 

[Cleary2349]

I went back to my PCP this morning. She said she has no pull to get Neuro to see me sooner. Things seem to be getting worse. I've been having continued issues with my leg and cramping mostly on my right side.

For the last 5 hours I have a twitch or spasm in the top of my right hand that has been causing my middle finger to jerk side to side. It's firing non stop now for 5 hours.

 

[lgelb]

I will stand by the suggestions I made above, none of which requires a neuro. You seem to be talking yourself into a corner where you are powerless to help yourself, but I really believe that how you feel from here to January is largely on you.

 

[Cleary2349]

Can you help me understand how ALS normally spreads. I know I have the diffuse twitching but the issues in my hands are progressing. From my hands the next was my right thigh and now whatever has happened to my right thigh, has spread to my left thigh. From my understanding on what I have read, there a many different ways it could progress, right? I also feel like the twitching in the thighs is way more prominent than in any other part of the body.

 

[ShiftKicker]

Hi Cleary-

Have you read the Read Before Posting? I describes what neurologists look for, as well as provides information about ALS. We simply can not provide the kind of feedback and reassurance you are looking for. If you are experiencing a change, increase or spread of symptoms, go see your doctor. We can not examine you, nor are we doctors who can provide you the diagnostic help you are wanting.

Please understand that this forum exists to provide support for those who are affected by a diagnosis of ALS/MND and caregivers and is limited in what we can provide to people who are seeking diagnosis. This is not a place to be used as a replacement for in-person medical care, nor for help with anxiety about health.

Please, no more posting here, as it's clear we are not able to provide you the reassurance you seek. I will be closing this thread, please do not open another.

 

[lgelb]

None of the distinctions you are compulsively drawing relate to how likely it is that you have ALS.

There are multiple possible patterns of ALS onset. You're not describing any of them.