Trying to find answers

[Golden30]

Hello,

I have been in pain for 2 years now. Would like to know your thoughts on my symptoms:

Symptoms I had (still have):

October 2017 to present: Ringing in right ear (all the time).


April 2019: Extreme back ache – middle top left side (shoulder blade area).



April 2019 to present: Very easily irritated – I am more snappy than usual.



May 2019 to June 2019 – August 2019 - November 2019: Severe night sweats --- I would say 15 to 20-night sweats total.



July 2019 to present: Dizziness / light-headedness / blurry eyes. When I go into a grocery store or mall with bright lights. Eyes seems to float around. Difficulty focusing. Brain fog and loss of balance at times.



July 2019 to present: Facial neuralgia / left side only – It happened two times in July 2019 and August 2019. This was a very sharp pain that last a few minutes. It affected my entire left side. It was excruciating pain. Today, my left side upper lip/ cheek still feels numb – Like I went to the dentist.



August 2019: Constant itching.



August 2019 to September 2019: Foot would always fall asleep / tingle regularly



September 2019: Pain in low left quadrant of abdominal.



October 2019 to Present: Odd painful sensations in both arms (See in more detail section)



November 2019 and June/July 2020: Weird sensation when swallowing like something was stuck in my throat.



November 2020 to present: Radiating sensation in left buttock to thigh (See in more detail section).



In more detail:

Right and Left Arms:

Starting in October / November 2019 - Present, I would have the following sensations:

• Arms would fall asleep, when I am in bed.
• Hands and arms feel numb – very limited sensations and can feel but can’t feel when I touch something. Feeling like someone wrapped a tight band around my bicep.
• Radiating nerve pain from armpit to wrist (both).
• Radiating nerve pain in forearm (both).
• No weakness but just feel like my arms are get tired more easily.
• Pain in the middle of my neck (right).
• Tingling thumb (right).

Left Leg only:

Starting in August 2019 to present, my left foot would always fall asleep / tingling if I was sitting and/or wearing a shoe. To give you an example, I was taking my shoe off while driving, at a restaurant, at the office, etc. I would immediately have to take off my shoe for relief. This lasted a few months.

After that, in about September 2019 I noticed for the first time, when I did a backwards movement in the bathtub when i'd pick up my daughter; I would lose full sensation in my left leg and foot. I would have to sit down right away. I would be okay after I sat down for a second. This happened two other times, including in February 2020. Another interesting point was that in November and December 2019, I felt like I was walking on clouds. Like the arch of my left foot was swollen but it wasn't.

I also noticed when I would stand for a long period, my leg and foot would go completely numb. Throughout this time, I would have a pain whenever I sit and/or walk. The pain would be exactly in my left gluteal (buttock) but when I would sleep which I sleep on my stomach I don't have any pain. The pain in my buttock would only occur when I would wake up and again sitting or walking. It’s a weird radiating pain in my left buttock. Another interesting point is I feel like I have issues walking and making turns (almost like my hip doesn’t work properly).

 

[Nikki J]

You definitely need to see or continue to work with your doctor.

you are not describing als though at all. You have primarily sensory issues pain numbness tingling. ALS is a motor neuronissue and the usual presentation is some degree of lost function ( such as inability to button a shirt) that spreads even though we feel normal.

there is clearly something wrong from your description but your answers are not here.
good luck

 

[Golden30]

I appreciate it! I just haven't felt the same in 2 years. Just to be clear, ALS is not painful and you don't feel it right? .... meaning if i've felt irritated, nerve pain, fatigue, etc. this is not the forum i should be in? My issues all started when the following happened:

• Two accidents (hit from behind) in June 2016 on Décarie and July 2017 on Décarie (Potential Whiplash)
• Hit middle of head on pipe in basement in December 2018 (Potential Concussion + Whiplash)
• Backed-up into a cement pole (parking lot) in April 2019 (Potential Whiplash)

 

[Nikki J]

ALS often has cramping which is painful. But loss of fuction that doesn’t get better is the hallmark. It starts small and spreads. there are people with ALS who have pain yes but ALL your described symptoms involve some kind of feeling. It is something else. I hope you have had your spine and brain mried and have been evaluated by an orthopedist given your history

really this is not the forum for you. Be glad of it!

good luck

 

[Bestfriends14]

I think you may have accidentally posted in an ALS forum instead of a general health forum. Nothing you have posted is related to ALS, so this would not be the forum for you. Definitely continue to work with your doc.

Best of luck.to you.

 

[Golden30]

Sorry for the reply again.
If i have a searing pain in my left buttock (and it's aggravated with activity like walking or sitting like in the car or on a chair) and my arms fall asleep when i am sleeping at night and my thumb is numb. You are saying this points away from ALS? Like pain is NOT a symptom? I also feel that my face feels numb - like i went tot he dentist and it's in my left cheek only. I feel weakness (like i get tired more quickly) but i haven't lost any strength in my opinion. Can someone explain? Here are copies of my Cervical and Lumbar MRI.

 

[ShiftKicker]

Oh, yikes- it sounds like you haven't read the Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms we ask every new member looking for answers to read. It covers what you're speaking of. It also seems like you are hoping this forum can help you track down the reasons for your non-ALS symptoms by providing us your MRI scans. That's not really what this forum is about. It's a support group for those with ALS and their caregivers. As Nikki has said above, it's really important to keep working with your doctors, as they are the ones who can help you with this.

 

[Golden30]

Thank you and i am sorry
The only reason why i added something was i found this article online. https://pmj.bmj.com/content/postgradmedj/38/441/383.full.pdf
It does mention sensory issues.

 

[ShiftKicker]

A journal from 1962, which reports that sensory issues are uncommon is a bit of a reach. Please keep working with your doctors and best of luck. This forum is not the place for you- which is excellent news for you. I hope you are able to move on from here now.

 

[Nikki J]

the primary symptoms of ALS are motor and manifest in loss of function ..cramps are common and painful ;otherwise Involvement of the sensory system is rare especially early and if present occurs as well as the main symptom of muscle failure

not only was the article 58 years it had references that were as far back as 1920. Diagnosis was not nearly as sophisticated then. Emgs were not generally available and mris did not exist

 

[Bestfriends14]

I think you may have accidentally posted in an ALS forum instead of a general health forum. Nothing you have posted is related to ALS, so this would not be the forum for you. Definitely continue to work with your doc.

Best of luck to you.

 

[Clearwater AL]

(Were the attachments you posted above from your previous mishaps?)

Regardless to your previous mishaps... have you seen a doctor for your
recent health worries?

If not.... until then.

 

[Golden30]

Hello,

My left and right arms are in excruciating pain when i sleep, especially around the forearm and bicep. The only way i can sleep now is on my back and my arms to my side. I never slept like that before. I typically would sleep on my stomach and my arm under my pillow. Moreover, my left thumb face is completely numb. Is this a symptom of ALS? During the day, when my elbows are at 90 degrees, they tingle from the armpit to the hand. My don't think i lost arm strength however i can say my arms fatigued much quicker.

Thank you.

 

[ShiftKicker]

Hi there-

I have moved your new thread and combined it with your old in order to keep your posts all together. However, there is no purpose in your posting here. It is hoped you visit with your doctor and do not ask folks with ALS about your symptoms. It's been made pretty clear to you by the previous replies that your symptoms do not match the normal pattern that indicates ALS. Persisting in posting here means you are not seeking appropriate help. Please only post after you have seen a doctor and they indicate ALS is on the table.

 

[Golden30]

Hello,

I have an update to share.

I conducted a Nerve Conduction and EMG last Wednesday.

Neurologist confirmed that Nerve Conduction was clean and EMG has slight denervation but he confirmed it was not ALS. I asked him why i was feeling all this nerve pain / weakness (tingling in right thumb and pinky left and radiating pain in my arms, especially when they are bent at 90 degrees + pain in my left buttock and numbness in my left foot) and he replied it might be stemming from my neck due to my accident (hitting my head on steel post). He's asked to re-run a MRI of my cervical. I also have extreme dizziness when i move my head quickly.

Before closing this task once and for all can someone confirm ALS is not painful or you feel nerve pain in any way. This has been going on for 18 months and i have not lost any limb movement.

Thank you and god bless.