ALS Anxiety for 3 months (28 y/o Male)

[MoeG]

Hi there, 28 here and for three months, I've had excessive anxiety that I could have ALS. I know the chances of this disease in my age range are very rare also because I don't have any familial ALS in my family as well.

This anxiety started 3 months ago when I noticed many muscle twitches around my body, starting with my legs and then moving up to my arms. I went to my GP and he gave me some anxiety medication and told me to get tested for any magnesium deficiency. The test came back and my magnesium was completely normal. Fast forward a few weeks later and I started noticing heavy weakness in my right leg. I could still walk, run, and jump, but it felt like at any moment my leg could give up and I would fall but I wouldn't. After seeing 2 neurologists, getting an EMG done on my right leg, and having an MRI scan of my head and spine, all results were normal with both neurologists saying that this isn't ALS.

Now to the present day, this weakness has moved from my right leg to my left leg, and I'm worried since they didn't do an EMG on my left leg at the time since I wasn't having any symptoms that they could have missed something. I also have had times where I feel I slur my speech (I do have a stutter from childhood so it could be a mixture of that and not that noticeable) or have trouble swallowing, I'm still able to swallow but I think it goes very slowly down my esophagus. My doctor has given me a referral to see a GI specialist regarding this.

Now I don't know how much of this I can contribute to my anxiety as I'm taking antidepressants to keep myself stable. Im also getting a very private blood test done to check for NFL chain levels in my blood which is a diagnostic biomarker for ALS. I am also getting reassessed by my neurologist in the next 3-4 months to check if anything has changed since I never was given an EMG under the chin to test for any bulbar symptoms. Athough I should be confident that if everything was normal during my first EMG then it will be the same for the next. Im hoping as soon as I get those results I can finally move on with my life and even though I might still have this unexplained weakness in my legs or arms I won't have to contribute it to anything serious.

Thank you for taking the time to read all this, hopefully, my story can be similar to what other people are going through right now. Any support would be great. Thank you.

 

[lgelb]

The hallmark of an EMG when someone has ALS is certain abnormalities in areas that seem fine. So you don't need to worry that the wrong leg was tested.

Many screening EMGs for people with limb issues don't include bulbar muscles; that is not unusual and not a reason to doubt the results. Presuming there continues no evidence for ALS, you could work with your GP to understand if this might be a post-viral syndrome, even if you think you haven't had Covid or last had it a while back.

 

[MoeG]

Ahh I see, I received the COVID vaccine back in 21' but never knew or had any COVID symptoms since then. My only lingering symptoms from the past three months are just restless and very weak muscles in my legs. Even with all these tests being done and showing everything is normal, these symptoms that are still here are what contribute to my anxiety. Hopefully, after the NFL chain test comes back I can be reassured and start treating my anxiety with a counselor. Thank you for your response.

 

[MoeG]

Hi there, firstly I want to thank Igelb for your quick response to my last post and wholeheartedly say I feel very sorry for your loss and hope you are taking care of yourself. I also appreciate you taking the time to answer questions on this forum. I know for myself as I have been dealing with health anxiety for the majority of my 20's that this is something that reoccurs from time to time and this time with ALS being at the forefront of it, I've been very much struggling.

For me, it's a vicious cycle of experiencing symptoms and then relating those symptoms to ALS, and the cycle keeps going on and on. I know there is so much reassurance a person can receive here until it's not beneficial for them in anyway, and I want to keep my thread open as I want to keep it updated as I get my blood results and 2nd EMG done. All that said for the past few days I feel I've been experiencing bulbar symptoms. Firstly I'm curious, since I have been experiencing limb symptoms for the past three months, wouldn't bulbar symptoms surface later on? Ive heard it's rare to have both limb and bulbar onset symptoms occurring simultaneously.

Also in terms of my legs, I've noticed when I scratch both legs from behind the ankle and up to the calf, I get this static nerve-tingling feeling but then when I stop scratching it stops.

I've also noticed when I sit on my leg for too long It's normal for it to fall asleep, but then my calf muscles get very hard and spastic, not to the point of pain but more just a spasm, it then subsides once the numbness goes away. I'm not sure what to make of it.

Now in my head, I have been attributing these bulbar symptoms to the medications I'm currently taking daily to keep myself stable from my severe anxiety which are:

- Buspirone 20mg
- Clonazepam 1mg
- Cipralex 20mg
- Seroquel XR 50mg
- Quetiapine 25mg

These Bulbar symptoms I'm now experiencing are random throat spasms that come and go when talking, slurred and slowed speech at times, and tongue soreness on the right side that then connects to the right inner lower jaw and right ear as I swallow. Ive also seen my tongue at rest and I do see some movement or twitches at times but ive been told that it's normal.

I am seeing my GP very soon and I do have a GI referral coming up to address my swallowing issues, but I'm curious if I'll need a laryngeal or tongue EMG soon before my next EMG reassessment in a few months, or if the GI can investigate these issues by doing a barium swallow test? (Im still able to swallow but with the other bulbar symptoms occurring I'm not sure if it would be more important to see an ENT first?)

In any case, I'm curious if what I'm experiencing can have anything to do with ALS. Or is it more likely that the medications I'm on for treating my anxiety could be the culprit for these things? Once again I plan not to keep posting on my thread again before receiving my results from my doctor in the upcoming months, but I would love anyone's insight. Thank you so much for taking the time to read this again, and I wish you all love and happiness.

 

[lgelb]

You are taking a dangerous and duplicative array of drugs that can cause any number of issues in their own right, including death. See Drug Interaction Report: buspirone, clonazepam, escitalopram, Seroquel, Seroquel XR

There are several issues with your regimen, but the most obvious is taking two forms of the same drug (quetiapine, aka Seroquel). Please discuss with your prescriber.

I would see an ENT before anyone considers further EMGs or other tests.

I continue to see no reason to worry about ALS, whether limb or bulbar issues. If your thread closes before your followups, you can open a new thread with the results. It takes time and energy for those affected by ALS to read posts like these, so please do not post just to keep a thread open.

 

[MoeG]

I appreciate the concern and have talked to my doctor about my list of anxiety medications I’ve been taking and he has removed two out of the five I mentioned and now am only taking:

- Colnazepam 1mg
- Cipralex 20mg
- Serequel XR 50mg

I am seeing my ENT in the next two weeks and also having a reassessment of my EMG in the upcoming months which I will update this thread for sure. My NFl tests are also due in the next week are so.

My only concern as of now are the bulbar symptoms I’m experiencing such as excessive saliva being built up in my mouth as I talk and excessive tongue twitching. I know it’s not wise to watch your tongue as I have read the forum but I do feel it’s weak, even though I’m still able to move it around etc. At this point I’m hoping these bulbar symptoms are because of the medications I’m taking as I sometimes slur my words here and there but it gets really hard not to lead my head into a dark place. I have also been seeking a counselor and taking steps to deal with this anxiety.

Just to be clear involving bulbar symptoms, if I’m still able to move my tongue around and swallow then I should have no worry about anything als related? Even though I can see twitching in my tongue at rest, I can still stick it out and push it on both sides of my mouth and upper palate.

Just wanted to be sure what usually is the start of bulbar symptoms. Because for the last few months I’ve been fixated at my legs and now Ive just been hyperfixated on my mouth. Can als move from limb onset to bulbar onset that quickly? I can still walk around.

I find this forum to be reassuring at times so sorry for the posting. Hope you are all well.

 

[MoeG]

Hi there, this is an update on the specialists ive seen and what my results were, I would love anyone's input on the matter and I hope you are all well.

Saw my ENT on the 18th of December and after examining my mouth says that everything looked normal and he saw no tongue deviation and no pools of saliva that could explain my hypersalivation. He said everything in the upper region of my throat is normal and that a GI specialist can do a barium swallow test to just make sure the esophagus is working properly but he's sure everything is normal. I mentioned my speaking issues and he says he sees no tongue weakness in terms of slurred speech and only notices my stutter which I have had since childhood although it has gotten worse due to excessive anxiety.

I also received my NFL chain test results and the normal range for my age group is anything below 8.4 ng/L, and mine was at 6.73 ng/L. So hopefully I'm assuming nothing neurodegenerative is happening overall.

I also was seen by a Rheumatologist and they assessed my blood work ruling out any type of autoimmune disease going on.

Im currently waiting for my next EMG reassessment in a few months and also seeing my Neurologist at the start of the year again.

I know this is all good news and I'm doing my best to always be positive, I'm just still hyper-salivating and have been given pantoprazole to treat that but I'm on day 3 and still no improvement. This could be a mixture of my anxiety and also the anxiety medications I'm currently taking mentioned above that are causing all this, but until I stop them completely I won't for sure know. Ive also noticed that the tip of my tongue has a dent in it but I've heard it could be stress-related as we tend to push our tongue behind our lower teeth, especially during sleep. I hope you all have a great holiday.

Take care of yourselves.

 

[lgelb]

As you say, all the newest information throws a big red X through ALS. It is very likely that when going on/off meds, it takes a while for things to calm down and then you will have a truer sense of whether you need these 3 meds, still a pretty heavy-duty combo and one that can affect sleep. If this regimen is right for you from the anxiety standpoint but causing side effects, of course, it may still be worth it, but you need to "cleanse your palette" to see if this is so.

I would move on, block this site and anything ALS-related, consider allergies relative to the salivation, which can pop up in adults, make sure the counseling you are getting for anxiety is what it should be, and get on with living the best life you can, the one that you deserve.