Doc said weakness in one leg, spread to other leg right after. Help!

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Telmo

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Hello everyone,

I have been going through some of the symptoms for early onset ALS for the past two weeks or so and I am terrified. I have read through the stickied threads at the top of this forum and I am still convinced that I may have some form of ALS/MND.

The first signs were an inability to lift my legs through my pants while getting dressed in the morning. While this eventually got better, I started noticing a lack of balance and coordination not only in my legs but with my arms as well. I've been having some difficulty walking around, like my legs are constantly tired.

I went to see my neurologist and she came to the conclusion that I had some weakness in my left leg, but not much. I am currently awaiting two MRIs: one for my back and one for my brain. However, shortly after this I started feeling the same weakness in my right leg. I am going to advocate for an EMG ASAP to clear my mind, but I must ask if this is in line with what the onset of the disease may look like if it starts in the lower body? The weakness and twitching are on both my upper thighs but haven't spread anywhere else yet.

Currently, I am freaked out because I am convinced that I have some sort of damage to my nerves. I'm only 26 years old. I understand that it's still possible, despite the numbers, to have this disease.
 

GregK

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ALS symptoms don't "get better", lad. Also, with ALS you don't "feel weak", my arms and legs don't work anymore, but I have never felt weak.

Do your tests, that's the only thing that will calm you.
 

Telmo

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So prior to your diagnosis, you had no feelings of weakness? What were your first symptoms like?
 

Vincent

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My first symptom was left foot drop. No sense of weakness, actually my wife noticed it on a walk while on vacation. Initially I ignored it and thought it would resolve itself. It has never come back, actually it has spread to the other leg as well. The disease effects only motor neurons, the nerves that control voluntary movement, and leaves your sensory nerves intact. So no, there is no sense of weakness, you just have a muscle that will not contract because the nerve that tells it to contract is dead.
Vincent
 

GregK

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So prior to your diagnosis, you had no feelings of weakness? What were your first symptoms like?
I have NEVER felt weak. Even now.

As to your other question, sorry buba, I try not to feed Health Anxiety with that sort of answer.
 

Telmo

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I have NEVER felt weak. Even now.

As to your other question, sorry buba, I try not to feed Health Anxiety with that sort of answer.
Heh, thank you for not enabling my Health Anxiety.

UPDATE! I have gotten MRIs on my brain and entire spine and am currently awaiting results. The weakness hasn't necessarily gotten better, but I am noticing that I am locking my knee involuntarily when walking on my left leg, which still has me worried. Not sure what my next steps should be, if I should be keeping an eye out for anything or what. Thanks for the replies so far, hope to keep everyone updated.
 

Telmo

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Heh, thank you for not enabling my Health Anxiety.

UPDATE! I have gotten MRIs on my brain and entire spine and am currently awaiting results. The weakness hasn't necessarily gotten better, but I am noticing that I am locking my knee involuntarily when walking on my left leg, which still has me worried. Not sure what my next steps should be, if I should be keeping an eye out for anything or what. Thanks for the replies so far, hope to keep everyone updated.

I can't seem to edit my posts even though the board says I have permission, but I can't tell if what I am experiencing in my left leg is spasticity or not, but it seems to have spread to my knees. Still worried :(
 

Clearwater AL

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For what it's worth and I hope it's a good sign for you... when this started for me the one thing I couldn't do was keep my knees locked back. It requires certain thigh muscles to do that. Again, that's my case. Ask your Neuro about that.

Hope for the best... something curable.
 

TomSanti

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My symptoms were symmetrical. Started in both hands and eventually both feet, then legs and worked its way up my extremities from there. Again mostly symmetrical. I did experience recently, complete loss of use of both arms and hands, however remarkable as it may seem to some, strength in my right arm has returned while the left remains essentially paralyzed. I'll see my Neuro next month and post an update. Like I have told many others I am not a doctor however yours sounds more like nerve damage. What about hydration, are you drinking plenty of water? A lack of proper hydration can cause lightheadedness resulting in a feeling of dizziness. I along with other posters never experienced a "feeling" of weakness, I just got weak. So try to remain calm, if you you have faith in the Lord than take a prayerful stance while you wait for results.

Good luck and God bless,

Tom
 

Clearwater AL

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TomSanti, if you were referring to me when you wrote...

"Like I have told many others I am not a doctor however yours sounds more like nerve damage."

Read my Bio.

And then...

"however remarkable as it may seem to some, strength in my right arm has returned while the left remains essentially paralyzed."

I'm no doctor either but... It ain't ALS. Nothings returns... that's why it's called progressive

I may know a little more than you do. Reading your last and previous posts... yours is more indicative of nerve damage coming from the cervical area of the spine.
 
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Telmo

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For what it's worth and I hope it's a good sign for you... when this started for me the one thing I couldn't do was keep my knees locked back. It requires certain thigh muscles to do that. Again, that's my case. Ask your Neuro about that.

Hope for the best... something curable.
Thank you for the kind words, and I am sorry if my post is offending in any way shape or form. I just got the MRI results from my Neuro, who said it was normal, but I'm still having fasciculations and awkwardness when walking. I'm hoping that one or both of these things get better in the coming months.. that would be great. Not sure what else I can do to ease my mind. My neuro won't even entertain the idea of getting an EMG, which tells me that either I haven't given the neuro the whole story or this really isn't ALS and I should be looking for other causes.

I'm still up and walking unaided, which is a good sign. Not sure what else I should be looking out for, if anything.

EDIT: When people talk about progressing weakness in ALS, they mean progressing clinical weakness correct? Am I wrong in thinking that I could go from feeling a little sore when I get up to not being able to get up at all?
 
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Lkaibel

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Hubs first symptom was foot drop, no feeling weak.

My first replies on this forum when I look at them now sound a little like prayers, like everyone knew the worst but were hoping along with me it was not so.

If you come here as a DIHALS and get a lot of "Does not sound like ALS", that's a very good sign.
 

Telmo

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Hubs first symptom was foot drop, no feeling weak.

My first replies on this forum when I look at them now sound a little like prayers, like everyone knew the worst but were hoping along with me it was not so.

If you come here as a DIHALS and get a lot of "Does not sound like ALS", that's a very good sign.

Thank you, and I hope things for you and your husband are going well despite the diagnosis.

I (as well as probably many others) still have this nagging feeling that things are only going to get worse, because they seem to have. I've seen posts on here of people who said their symptoms got better but were still dx'd with ALS at a later date.

I have an EMG scheduled with an ALS specialist in the upcoming weeks, and my neurologist suggested physical therapy for the leg that I am feeling the weakness in. FWIW, the specific motion that seems to be difficult is when I try to point my left knee to the left of my body. Seems to be difficult even without resistance. I'm mortified that it will progress into me being unable to do it at all anymore, which is why I'm feeling so much anxiety. It feels like weakness has spread to my other limbs already, including my shoulder and fingers, then my facial muscles (lower lip). Waiting for this EMG is killing me and I don't know how I'm going to cope with waiting for the results.
 

TomSanti

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T,

It looks like that based on a number of replies since my original reply, I stand corrected with regard to symmetrical vs asymmetrical. I admit that I was basing my post on personal experience of my own and others' with whom I met at clinic. I'm not too big or proud to admit when I'm wrong. You bring up a very good point with regard to my condition which one neurologist diagnosed as "progressive muscle atrophy" and then it was on the ALS "scale"

However, I'm going to push back on your statement that "it never returns so it's not ALS" I am living proof brother, and my story, while rare, is not unheard of. I have great faith, and with God anything is possible.

Good luck and God bless you today,

Tom
 

Telmo

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I am incredibly confused right now. My lower limb symptoms seem to have gotten better (I can walk around and get up without any struggle), but now my left arm seems to have become weak when I try to pull my left elbow back. My entire left side of my body feels like it's being attacked. The pain seems to point away from ALS, but I can't tell if it's from a muscle spasm or not. I don't feel any spasms, and my fasciculations seem to have migrated from my thigh to my calf, and is happening a lot less frequently.
 
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