Scared I might have als

[Pumba7]

I’ve experienced this for a while

• right shoulder pain for about 8-9 months it started with some light pain and stiffness then while in the shower I was going to wash my hair but it felt like something snapped, it didn’t but that was the feeling, I did lose all power in the arm for a while. so I couldn’t use my arm for like a week due to pain and mobility issues, I couldn’t raise my arm above my head. I still have pain in my shoulder and a little stiffness and the bone cracks while I try to stretch the arm. The pain and stiffness in the shoulder can disappear for a couple of days and then return. I don’t know if it’s really gone or if I’m not thinking about it?.

• stiff right hand
I’ve had this on and of for maybe a year where i feel resistance when I try to extend my fingers fully and the thumb is really stiff. 2 days ago I noticed that the area around the thumb stared to twitch visible, it lasted for maybe 20 sec and hasn’t happened since. I have a hard time using a pen, I can write but it feels very tiring and I get pain from it but I’ve thought this was because of stiff hand but now I’m worried.

•right arm feels heavy, the left arm feels light and normal but the right is stiff and I sometimes get tingles shooting in the arm when I lift something or fully extend it. It feels like my arm never relaxes.
Face• i have had a tingly sensation in my right cheek for a year at least, it is sensitive to touch, the cheek is a little puffy and when you touch it I get a tingly sensation.

I don’t know if I’ve lost muscles or strength it’s not something I’ve noticed.
I can get small twitches in legs chest all over the place really but it’s mostly on twitch and then it’s over it’s not like it was with the hand.

I didn’t think of it then but I remember that maybe a week ago I smoked a cigarette and I started to produce very much salvia nothing like I’ve experienced before but that when away after like 5 minutes.

I work at a warehouse driving a pallet truck and while you steer the steering wheel your shoulder makes a bad motion I think and you use the thumb to accelerate I’ve thought this was the cause of my troubles but now I’m worried it could be something serious

Is any of my symptoms consistent with als symptoms? Should I see a doctor or am I worrying to much.

The Twitch that happened in the hand was where I marked it on the pic, i think I’m a little more swollen on the right hand, could that be muscle loss? I have since that twitch experienced it more often just for like 15 minutes ago I felt and could see it twitch in right bicep and then in the outer hand near the pinky and then in my left thigh I don’t now what to do I’m so worried.
I’m 27

 

[Nikki J]

Should you see a doctor? Of course if you have painful or worrying symptoms? Does it sound like ALS? No.

the hallmark of ALS is clinical weakness manifested by inability to use an affected muscle. Soreness and stiff feelings are not signs and twitching is so incredibly common and meaningless without accompanying weakness. Even when those occur there are many other less malignant and more common causes but you don’t have that anyway. Swelling is not muscle loss

best plan see a doctor ask your questions and stay off google

 

[Pumba7]

Hi I felt both arms and the right arm feels smaller, like it’s less muscle there and I’m right handed but I measured it and I got the same number as the left one. I tested my strength with dumbbells, I held them over my head and I started to shake faster on the right side, and the scary part is I started to twitch like crazy on the area between the shoulder and the head. I want to think this is due to existing shoulder pain that it might be weaker because of that? but I’m scared it could be als, I might be overthinking this, I hope so but I just can’t let it go.

 

[Bestfriends14]

Yes, you are overthinking things. How can a muscle "feel" smaller? My advice- Let it go because life is way too short to fall apart because of innocuous issues that have nothing to do with a horrid disease like ALS. Please go see a doctor. There is nothing the dying folks, or their exhausted caregivers, on this forum can do for someone who has their (physical) health.

I wish you nothing but the best.

 

[Pumba7]

Hi i meant that when I touch both upper arms the left is bigger and the muscles are more firm but I’m right handed, I feel much softer on the right side and that worries me since you read a lot about muscle loss. I’m so worried and I’m sorry if I’m wrong for asking this here.

 

[lgelb]

The muscle loss in ALS is much more than one side softer or smaller. Handedness is not all that -- my right upper arm is firmer than my left, though I'm left-handed. It has to do with heredity, what you do with each arm, etc.

More importantly, in ALS, the muscles that no longer have enough nerves to control them atrophy along with not being able to work any more. It is not just that they look soft or disappear. They don't work.

You may have suffered an injury, with or without nerve damage, but nothing to do with ALS. Seeing someone will be much more productive and reassuring than fishing around here.

 

[Pumba7]

So I’m back to worrying a lot I was just at a physical therapist for my shoulder and she did some exercises or tests you could say. She put her hands on my arms and told me to push her arms up as hard as I could. When I did this my right arm started to shake and she said she noticed that the right arm shook more than the left, if the left even shaked. She said that she believe that I have some problem with the rotator cuff but she didn’t know if that was why my right arm shaked so I got really worried that I’m getting weaker in that arm and that’s why I shake? I thought about when I was at the doctor for my other issue in my arm where I get a tingle when I flex it or lift heavy things, she asked me if I’ve always had so strong arms, she just felt the underarm, why would she ask this, did she think I was stiff? Could that be als? This was maybe 6 months ago. After the physical therapy I went straight home feeling my muscles and lifting dumbbells to see if I would twitch or shake more in the right arm. I think I shake more in the right arm but there is not a lot of difference in the time of how long I can hold the dumbbells on the arms it’s about the same. The physical therapist said that I should ask for a mri and she then said what freaked me out, she said that they could also do a emg on the arm I don’t know if she meant because of the shoulder or the underarm but why would she suggest that? I’m worried sick I notice more twitches all over the place. About a week ago before I started to think about als I didn’t even think about twitches so I can’t tell if they’ve been there always or if their new.

 

[Nuts]

Have you seen a doctor? The earlier response that you received from one of the most respected people here still stands. Please speak to a doctor instead of asking people who are dealing with this monster to continue reassuring you.

 

[Pumba7]

I went to see a doctor but they just said it’s only been a few weeks of twitches, that we should wait and see. They don’t want to refer me to a neurologist. I asked them to do a neurological test and this was just the ability to keep your balance on one leg, close your eyes and stand still with arms out and touch your nose with both hands. He did also check my tounge and told me to smile, he also thought I had good reflexes. I didn’t do any strength tests. I still feel very stiff in my right hand and my right arm shakes very easily let’s say I drink something when i take it to my mouth the arm shake a little bit but when I do it with the left arm it doesn’t shake, this makes me worried as I’m feeling I’m getting easily tired in right arm and hand. I’ve bought a grip strength tester and I scored about the same in both hands, maybe a little bit more on the right hand if that says anything but I pushed so hard and now my I have pain in right hand mainly the pinky and that area around that, Could my hand be weaker and that’s why I get pain?. I also have a very stiff neck according to my physical therapist she said that one side, the levator had increased muscle tone, I have been very stiff on one side of neck. I’m freaking out that this is spasticity that I’ve read about. Could all this be because of my shoulder problem, could the neck be because I’ve been so stressed lately? I still have twitches all over, on average one every hour or so. sometimes none for 3 hours and sometimes 3 in one hour. I read about ALS all the time and I’m so worried, I hope that it’s my anxiety that are causing the twitches and maybe the stiffness in the neck but when my physical therapist said that I lost it and started to worry more than ever. What do you guys think about this?

 

[Bestfriends14]

Please print this out and take it to someone who can guide you to the other side of your health anxiety. Your posts are becoming frantic and you are repeatedly piling on non-ALS symptoms by the post. Please know that the folks here are actually living with this disease and have no avenues with which to get treated or cured. You, however, have the luxury of getting yourself well. Again, please print these posts an take them to a professional who can help you much better than the forum members here can.

I sincerely wish you nothing but the best. Health anxiety can be crippling and can ruin your life. Take control and do not let it; be stronger than the voice in your mind that is telling you to look for reasons you have disease that you, in no way shape or forum, evidence having.

Best of luck to you and take good care.

 

[Pumba7]

The reason I’m extra worried is that I looked at my sod1 gene on 23andme and I saw that in rs1041740 I had T/T and it should be C/C

rs1041740 RefSNP Report - dbSNP - NCBI

www.ncbi.nlm.nih.gov

It’s not in clinvar but I’ve seen it in som studies about als. Link below.

Frontiers | Haplotype Analysis of the First A4V-SOD1 Spanish Family: Two Separate Founders or a Single Common Founder?

Despite the genetic heterogeneity reported in familial amyotrophic lateral sclerosis (ALS) (fALS), Cu/Zn superoxide-dismutase (SOD1) gene mutations are the s...

www.frontiersin.org

2 patients in that study also had T/T on rs 1041740.
it makes me worried that I have the same but I try to calm myself with that 6% of the world have the T/T variant.
I think that the study was focused most on
Rs121912442 who is in clinvar rs121912442 RefSNP Report - dbSNP - NCBI

But just it being mentioned in the study makes me so worried.
How likely is it that rs1041740 is causin als?

I can’t see Rs121912442 on 23andme so I don’t know what I have in it and maybe i should stop researching dna.
But please tell me if I should worry because of the T/T variant. I’m going so talk to a health anxiety psychiatrist.

 

[lgelb]

If you had a family history of ALS, you would know that, no? So no reason to worry about familial ALS.

A stiff neck is not spasticity, but if you are tense, you could certainly have more "tone" on that side, and overdoing it with a grip tester signifies that you're over the top here. We've already discussed twitches, which are not significant without clinical impairment.

By saying you could get tested to rule out the thousands of neurological problems that are not ALS, the PT was not pointing you to ALS.

Seeing someone for the health anxiety is a good plan, but hanging here doesn't seem to be reassuring you, so I'm closing this thread. Please do not start another unless you get an MND diagnosis, which I am not expecting.

Best,
Laurie