Please convince me it's not ALS

[joshf123]

About a month ago, I noticed some weakness and unsteadiness in my legs.

I was working as a cable installer, which at times could get really physical. In fact, just before I noticed the weakness, I had one of the most intense jobs in the year and 4 months I had been working there. I had to haul a 24' extension ladder (about 80 lbs, and I'm a small guy) across a small yard and around the side of the house through 6 ft of mud (they had just refilled a 6ft hole from working on water lines). I probably spent an hour messing with that ladder trying to set it in the mud. I was also up and down a small hatch into the attic around 20 times. While I was hauling the ladder back to my truck, I lost my balance on my right foot and had to catch myself due to the unsteady terrain, but quickly recovered. I didn't notice any pain or other odd sensations at the time.

I tried to ignore the leg weakness for a week; was even able to jog a mile and a half twice that week, but it wasn't improving, and just a few days into the week I noticed the twitching. It started in both the tops of my calves and thighs, but I noticed it mostly in the left leg. Naturally, I became curious and googled my symptoms... and of course the first thing you see on the searches with leg weakness and twitching is ALS.

I paid my GP a visit. He didn't seem too concerned, especially after doing the basic neuro push/pull test, but went ahead with an MRI which came back normal. I must also add about a week prior to this GP visit (just before I noticed the leg weakness) I paid a visit to him for constant dizziness. They tested for potassium, sodium, and wbc. WBC was a little low, everything else normal. The dizziness has completely gone away.

They did the same blood test again, WBC was even lower than last time, but they said they wanted to wait 3 weeks and test it again before referring me to a hematologist.

It has been nearly a month since I noticed the initial weakness, and I have not seen any consistent improvement. There have been a few moments where my strength seemed to be returning, but they're always short lived. All I have to do is stay on my feet for more than 10 minutes or so. The twitching appears everywhere now: feet, thighs, calves, shoulders, butt, back, abs, forearms. Sometimes, and especially if I move my legs a certain way, I can feel a buzzing/vibrating deep in my thighs, but still mostly in the left. It feels exactly like a cell phone vibrating. Last week I was able to walk about a half mile at a music festival and had to sit down because my legs were shaking like crazy. After sitting for about 2 hours, I was able to make the half mile walk back to the car, legs shaking and all.

There has also been some intermittent weakness and heat in my arms and just an over all awkward feeling in my fingers. I haven't noticed it as much lately.

The problem is starting to become most apparent in my left knee. It feels stiff and sometimes pops. There is some pain if I move or twist it a certain way, or press in the right area, but the most prevalent symptom is weakness right above the knee in my thigh. It doesn't take much for it to start shaking. I find myself holding my weight on my right leg while standing, and attempting to walk normally just feels awkward.

I have not fallen (yet), although sometimes I feel off balance and have to put extra effort into holding myself up. I often catch myself reaching for doorways and other objects for support. I think that might just be out of fear. I can wiggle my feet and toes effortlessly, and I can even stand on my toes and briefly hop on one foot on each leg.

From what I've read, it doesn't sound like the classic signs of ALS right now, but I'm afraid I may be in the beginning stages and it's only a matter of time before I lose my left leg, especially since the weakness seems to be getting worse. Then again, I keep telling myself I may have suffered an injury at work without realizing it. But why would that cause weakness? I figure I would be in pain, but not shaking as if I had just leg pressed a thousand pounds. Or maybe I am suffering muscle atrophy in my left leg and it's putting more strain on my knee, so my knee is hurting as a result? Or is the low WBC related to an autoimmune problem causing the weakness?

Does anyone know of something else that could be causing these symptoms? I'm otherwise a very healthy 28 yr old male. The only family history of medical problems include depression, rls, and non diabetic peripheral neuropathy.

I'm forcing myself to continue just living my life best I can. What else can ya do? I'll be returning to the GP on monday hopefully with a referral to the proper specialist. I love to go jogging, and I can't right now. Sometimes I feel like I never will again. I hate to be so dark, but it's tough when just doing things around the house is a challenge.

[puppyswan]

From what I see your symptoms may be because of your anxiety. Because most of us on AZ are not doctors, we cannot be sure. I recommend going to the doctor's one last time and tell him about all of your symptoms and all of your fears. It may be completely unrelated to ALS (i.e. old age etc.). You need to also make sure to eat right if you have been have this serious of hypochondria. When we are anxious, out body sends adrenaline throughout our body which can cause long-term stress. We may have a loss of appetite and thus you may have less energy/protein and that may be why your body is acting that way. Go to the doctor, tell him all your fears, and he may recommend treatment or a therapist to help you overcome this fear. Do not worry, you are in safe hands at the doctor's.

[Catesykes]

I've had similar symptoms and I've been diagnosed with anxiety and depression. I'd convinced myself of all sorts including ALS. Are you anxious? This can cause the feeling if leg weakness. I've had sooo many physical symptoms its unreal.

[joshf123]

Thank you for the replies and encouraging words :)

I have a life long history of depression and anxiety. In fact, just before the weakness came about I was convinced I had a heart problem. I was so convinced I had a hard time making myself get up just to go to the bathroom for fear of my heart rate increasing.

I'm still paying on the bill from the cardio, which ran a full workup finding nothing, and I'm no longer worried in the least about a heart problem. I am still anxious, but I recently started prozac which is helping with the compulsive thinking and worry.

I want so badly to believe it's an anxiety thing, but it just feels so real and has been going on for so long now I can't believe it's "all in my head". I just spent an hour helping my dad fix a light fixture, which took a great deal of physical endurance. I had to climb up on a footrest and stay on my feet while holding the light fixture. My legs were weak the whole time, but I was able to do it. After resting for a few minutes, I got up to get something to eat and my legs felt extremely heavy and jelly like. I was convinced I was about to fall.

Catesykes, has your leg weakness been this severe and lasted this long? Did you experience twitching immediately after only a small amount of exertion?

[Catesykes]

I've had leg and arm weakness to the point I know longer wanted to exercise for fear of weakness- very unlike me. It's lasted 3 months. But it is getting better now. The more you focus on something the more you feel it. It's hard but try to ignore it. If you can still actually do things it's not real weakness. Shaky/trembly weakness and fatigue is classic anxiety.

[Catesykes]

As soon as I googled 'weakness' I freaked out. Then the muscle twitching started with a vengeance!!

[puppyswan]

Stop googling, this will make your anxiety/depression worse

[Catesykes]

I've certainly learnt my lesson the hard way! I've stopped googling.

[joshf123]

Catesykes I'm glad to hear yours is improving. 3 months is a long time to deal with something like this! I've also stopped googling my symptoms. Now I just try to relate to folks on the anxiety forums and spend more time with my friends and family. That plus the prozac has helped.

[colls22]

I've been the same way re not wanting to exercise for fear of something happening.

I've had left shoulder issues for a month or so now. Weakness and aching. Truth be told, it may have started a year ago, but once I had a clean EMG, I didn't care what else it could be and didn't treat it. So they tell me it's a long standing rotator cuff issue,Mobutu I remain unconvinced.

Anyway, I've developed this left leg issue too. Don't know what it is - tight, achy, is it weak? No idea. But like you, I feel like it tires so much more easily, and that freaks me out. Of course, we could be tensing the muscles up more without realizing it, which could add to (or cause) the issue as well. It's all very confusing.

Here is what I've been told - if you're feeling anything, you really have nothing to worry about. My neurologist even told me that not one person who has come to him with fears of *LS has actually had it. It's the people who come not really thinking anything is wrong who end up having the issues. They don't FEEL anything, they just start noticing problems doing things, and don't know why, since everything feels normal.

That's what, I think, we have to keep telling ourselves. If we feel something, it's probably ok. It's the people who don't understand why they're tripping or dropping things who might need to be concerned.

At least, this is what I think!

[joshf123]

Colls thank you so much for that little piece of information. It's exactly what I needed to hear. I don't know if you've seen any other als fears threads, but that would probably offer the peace of mind so many others are looking for.

Thanks again.

[sassparella]

You say you started prozac recently. I googled prozac and weakness and found that weakness can be a side effect of the drug. Did this start before the prozac or after? It's just a thought but might be worth looking into.

[joshf123]

sass the weakness came before I started the prozac.

[ejmommy]

Hey Josh it seems like your doctor didn't find any weakness on this exam?

I have a lot of "perceived weakness." My muscles tire easily, I tire easily! And of course I get a lot of all over twitching. I've had all the neuro tests and gotten the all clear a few times over the last 6 or so months. Is the Prozac helping at all?

I know this anxiety thing is SO hard, but remember how convinced you were of your heart issues. It can convince you of anything! Hope everything turns out fine with your appointment tomorrow.

[Ihadcancer]

Hey Josh,  are you eating well?  When I was getting chemo for colon cancer, I wasn't eating well and had the leg problems you're describing.  My potassium was low.  My legs would shake, ache and feel like rubber.  I felt like I couldn't stand up at times. 

A couple of bananas will NOT help if it's low potassium.  Do a websearch for foods high in potassium or ask your doctor to do a simple blood test.  Potassium will throw off your heart beat, too. 

[joshf123]

ihadcancer, congratulations to you on defeating your colon cancer!

My eating habits are pretty much the same as they've always been. I usually eat raisin bran or oatmeal in the morning, a turkey or roast beef sandwich with chips for lunch, and lately good home cooked meals for dinner. (beans and rice, meat loaf, ham, vegetables) My initial blood tests included potassium, which was normal according to the doctor. The weakness seems to have "leveled out". I'm not noticing any improvement or increased weakness, although I've developed some tenderness in my thighs since I forced myself to stay on my feet longer than usual yesterday.

ejmommy, I think the GP was just doing a basic test to see if I had normal neurological function in my legs. He didn't comment much on it other than "well everything neurologically seems to be fine". I also noticed on my report he wrote "unsteadiness in legs" rather than weakness. I know there must be quite a distinction in medical terms.

When you say your muscles tire easily, do you literally feel like they're going to give out on you without much exertion? It doesn't feel like some vague sense of weakness. Just a couple of weeks ago I could easily pull off a 1.5 mile jog and last friday my legs were jello and shaking from a .4 mile walk downhill from a parking garage to a bar, not to mention the twitches are worst immediately after activity.

I'm trying to get some more perspective on this "perceived weakness" as I've never heard of it before. I figured weakness is weakness. Either your muscles are able to do something or they're not. Does it typically feel so real? I used to run 2 miles every other day and I could feel the tiredness in my legs, but it would always go away, and I could still walk around, do house chores, etc... immediately after without even thinking about it.

And you bring up a good point about me having once been so convinced of a heart issue. The situations seem almost identical but with different symptoms.

Thank you for your replies. I'm no longer in a state of panic thinking it's a MND or anything terminal. The prozac has helped somewhat with the compulsive thinking and worry, but I think just spending more time with my friends and family and having their reassurance has helped the most.

[joshf123]

Just a quick update.

Dr visit went seemingly well. WBC is back up to normal. All electrolytes are normal. They're testing for a couple of more things in the blood specifically related to the muscles, and those results will be back in a few days.

Dr says I should stay as active as possible, and depending on the blood tests and my progress will refer me to a neurologist or rheumatologist.

I'm trying to stay on my feet, but it doesn't take long for my calves to start burning out followed by the twitches. My worry is directly proportional to the intensity of my leg weakness at the present moment.