Is this ALS

[sg1000]

Hi everyone,
Stumbled upon this forum after struggling to make sense of my symptoms in the last 5 weeks. I Have been scared as these symptoms have never occurred in the past

- It started on 7/25/21 with twitching of right index finger (moving quite too much). Happened quite often for a few days
- Did all blood tests and all normal including B12. Doctor asked to take B12 shots for 3 weeks as I had B12 deficiency long time back.
- Right hand and right calf felt heavy at times
- Twitching happened occasionally in left index finger too (movement)
- Stopped most physical exercise as I thought it could be exertion
- Twitching started near eyes both sides and then abs within 10 days
- A couple of times had vertigo feeling and thought it could be B12 after effect. Stopped B12 shots. Didn’t have this in last week.
- Some cramps started in different muscles but not too frequent. finger twitching died down.
- Met a neurologist but she did not find specific diagnosis after simple clinical evaluation and asked to come back in 3 months
- Currently, have twitching in abs and sometimes in shoulder, arm or buttocks. Heaviness in left feet and right hand some times. Feel pain in right hand and right leg after exercising or long walks. No pain on left side. Can’t tell much about weakness but some pain in right fingers as well.

I know these are too many varied symptoms but the constant in last 5 weeks has been some sort of twitching and pain after working out in right leg and hand. Went for a brain MRI but normal. Trying to get an EMG done now.

 

[lgelb]

This sounds like some longstanding issue that has worsened, not the onset of ALS. B12 deficiency doesn't usually just happen -- there's a reason for it, from diet to GI dysfunction, and systemic issues like neuropathy that often go with it. Staying consistent with exercise helps you measure what is happening in a way that makes diagnosis easier. The shots themselves may be too much, not enough, or have no effect.

I would find an internist who is willing to work with you over the long haul to assess the differentials, B12-related and otherwise, and develop a treatment plan. Blood levels are not always reliable guides to the action steps. As you will have read, ALS is the disease where you stop being able to do things, not where you experience pain after exercise or long walks.

Best,
Laurie

 

[sg1000]

Thanks for your response Laurie. I couple of weeks later my symptoms are more focused now.

1) I can’t type on my keyboard for long time. My right fingers start paining and tired. Feel better after rest. Standard neuro strength test for right hands are still okay but increasingly getting tired after typing or using right hand fingers.
2) Also starting to feel pain in other right body muscles like butt, shoulder. Even though I am doing bilateral stretching and other bilateral normal activities.
3) Twitches are all over the body.
4) Also having a feeling of tremors/shakiness on upper body a few times a day.
Going for CPK tests and nerve conduction tests today along with another clinical tests with a neurologist.

 

[Bestfriends14]

I will second Laurie on her response to you that what you describe is not ALS. ALS is about failing to do something, not getting tired after doing something. Please reread the sticky.

Good luck to.you and take good care.

 

[sg1000]

Met a neuro and got done with Brain/Spine MRI, CNV and EMG on right side. He said it’s all clear but my symptoms are still there and in fact increased. No lesions in MRI so they are ruling out MS. But my ANA testing was positive but non conclusive. Getting more extensive ANA tests done for auto immune.

1) Pain in right hand and forearm after using it too much. Same for right leg after I walk for long distance. No pain on left side.

2) twitching continues all over the body randomly Some correlation between twitches and the usage of that part of body. If I walk too much, later twitches in legs.

3) Periods of time (5-10m) during day where I feel nervous/confused and slight shaking/tremor weakness in hands.

waiting for results from more blood tests.

 

[Bestfriends14]

Congrats on your EMG and clean clinical exam that states you do not have ALS. I do wish you all the best. Take good care.

 

[lgelb]

I would work on nutrition/hydration/sleep with a symptom diary and your team, which can make all the differences with the issues you describe, whether you have an autoimmune disease or not. The good news is, you don't belong here.