Numbness anyone?

Mdntcowboy

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While difficulty swallowing was my first symptom, i developed an ulnar nerve numbness in my left hand and it's never gotten better. It affects my little finger and ring finger and that side of the hand. Not really painful as it is annoying. Sometimes my limb and neck weakness feel better. Good days and bad days, but progressively worse.
Does anyone else have profound numbness in a hand, foot or anywhere else?
Thanks
 

Clearwater AL

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Maybe before you get any responses you might share a little more info about your
diagnosis. Maybe when, where and by who. Do you have a clinic?

Most new members share their road to becoming a PALS. It is optional.

That info helps the very ALS knowledgeable members address your issues.
 

KarenNWendyn

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Peripheral neuropathies are common in the general population. So it would make sense that some people with ALS can have peripheral neuropathy, and therefore numbness.
 

BK2011

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Well, I have had some “tingling” sensation in my left hand. Feels like my hand went “to sleep” if you know what I mean. At the same time, my right forearm had a very uncomfortable burning sensation, my neck hurt (uncomfortable), and my shoulder blade hurt/burned (most uncomfortable symptom). After a couple sleepless nights I went into the VA. After a MRI they found some bone spurs in my neck (cervical Osteophytes) as well as severe to moderate foraminal stenosis C4-5 and unconvertebral joint and facet hypertrophy with severe left and moderate right foraminal stenosis at C5-6. SO, probably not caused by ALS (originally I thought it numbness/pain might be caused by muscle wasting). From the report it sounds more like age and a lot of years of football (junior high/high school/college). In general I kinda feel like I’ve been “rode hard, put to bed wet.” VA sent me to physical therapy which didn’t seem to help much. Then they put me in a contraption that stretched my neck. That helped considerable and immediately. They also gave me a soft cervical collar to wear at night and that helped as well. Pain and burning eventually went away. Numbness and tingling in my left hand is still there but not as bad.

Bill
 

Clearwater AL

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Bill, I don't see you've given a confirmed diagnosis of ALS. (from the VA?)
Have you had an EMG?

If so what was the summary report?

A lot of what you have described so many others have said are not ALS in replying on
another sub-forum related in most cases... tingling, burning, pain and numbness.

PS. I'm from Clearwater too... are you going to Bay Pines VA Medical Center?
 

Nikki J

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Thanks for pointing out Bill and Karen that just because you have ALS it doesn’t mean every symptom thereafter is due to ALS Unfortunately we are not immune to having other things go wrong.

asking for an evaluation of an unusual symptom may lead to the discovery of a second, unrelated condition which in Bill’s case was happily treatable
 

BK2011

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Sorry if I wasn’t clear, Nikki’s point is the one I was trying to make. Not every issue we have is linked to ALS.

AL, was your question for MDNTCowby or me. I was diagnosed a long time ago at the Kessenich Family ALS Clinic at the University of Miami before ALS was presumed service connected. Now I go to Bay Pines. Because my progression is so slow VA neuro at Bay Pines sent me to the neuromuscular specialist at James Haley to be checked again (EMG, nerve conduction test, blood work, physical exam, history; the whole work up). VA doctor walks in and says “I am sorry, you have ALS.” “Yeah, I kinda knew that.” She actually set up genetic tests since two of my cousins died of ALS (one survived ten years, his sister died nine months after diagnosis). Tests came back negative for known genetic links to ALS.

Bill
 

Nikki J

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Bill did you connect with Northwestern ? They collect PALS DNA and are looking for other mutations they will tell you or your family if they find one When c9 was discovered some of my friends found out their family mutation from there. They also discovered Anthony Cabarjal’s family mutation. While your ALS may be SALS even with your cousins being presumptive FALS it might be worth doing. I say the SALS piece because I actually have a FALS cousin who has an apparently SALS cousin on his other side

oP sorry for hijack
 

Clearwater AL

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Ok, not so much a hijack. Mistake. Maybe others have never made one.

However, Midnightcowboy (the OP) hasn't replied to my post following his.

Excuse me. Sorry Bill.
 

BK2011

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KimT

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I have lots of sensory symptoms which my doctor said may or may not be related to the disease. When muscles weaken in your back, you may experience back pain even if you are still walking. Last year my GP thought I had an appendicitis and the CT scan showed my scoliosis had worsened and I had some degeneration in my lumbar spine. She said weakening of the muscles could have made the scoliosis worse or it happened because my lumbar spine is starting to degenerate, probably from years of running and hiking.

Anyway, he ordered a MRI with and without contrast for next month to see how bad it is and the scan will help him know if the pain can be helped with something besides Oxy and Valium.

I have acid reflux and, early in my diagnosis, I thought it was bulbar symptoms. It wasn't. The swallow test was normal and the ENT at Mayo referred by my neuro said I had pretty bad reflux, no doubt aggravated from gaining weight and eating all the wrong food.

Sometimes, there won't be answers. Sometimes there will.
 

nona

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@Mdntcowboy , I experience periodic numbness in my right hand as well. It is usually because of nerve impingement in my shoulder or elbow and my PT has been able to resolve it.
 

Dee Dee 0617

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Thanks for the smile. Reading this as an observer was like watching couples tennis. Hello Bill, I am sorry you're here, but you are most welcome sir. And as I am sure you have noticed we have people here who have a vast knowledge of ALS.
 

lisa g

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I have constant burning and tingling of my lips. I addressed it with my neuro but she couldn't tell me if it was related. It seems to exacerbate after eating anything acidic. Feels like I've had novocaine and my lips are swollen even though they're not. Quite annoying. Impedes my speech at times.
 

old dog

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I'm experiencing numbness in my right arm. It's been going to sleep periodically over the last few months, but I have always been able to "wake it up." Today, it has stayed partially numb all day. I mentioned it to my PC last week. She suspects it is a pinched nerve in my neck. I have dislocated the right shoulder and have had a large lipoma removed from that side of my neck, so who knows what the trouble may be. I also have scoliosis. This thread is timely for me. Thanks, everyone.
 
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