Looking for advice/Chronic leg weakness

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ragnar855

New member
Joined
Jul 13, 2019
Messages
3
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
TX
Age: 34
Sex: M
Height: 5'11"
Weight: 243lbs
Race: Caucasian
Duration of complaint: 3 months
Location: Lower back/quads/calves
Any existing relevant medical issues: Out of all tests, only thing fatty liver and arthritic changes in L4/L5
Current medications: None


Hello!

I'm at a loss and unfortunately I just can't seem to get myself put in the right direction to figure out my medical condition that is going on.

About three months ago, I slowly started realizing it it was getting harder to stand. At the time, I thought maybe I just needed better shoes, so I got two new pairs. It was working at first, but something just seemed off.

At first, I went to my family doctor. We discussed what it could be, but nothing extreme was thought, which blew my mind. Did lots of blood work, everything came back okay. No diabetes, pre-rheumatoid panel looked okay, CK okay, all other muscle enzymes okay. Only thing was vitamin D was low. Made sense, I'm normally inside and very sedative (gamer, etc) -- After weeks go on, i'm still struggling, I even started working from home quite a bit, because it getting to the point where I would struggle standing for longer than 10-15 minutes before my legs should just start feeling shaky and weak. Even sitting down, always sore and achy! Marked down as "anxiety" as I do have a history of health anxiety.

My symptoms are pretty much muscle twitches, in quads, calves, hands, biceps, etc. My quads and calves are always sore/stiff, its feels like I just did 15 squats, all the time, never really going away (Except for maybe first 5-10 minutes when I wake up) even sitting here typing, my legs just have this sore, achy, and almost like constant inflamed feeling. Sometimes my arms even feel weak, hands, but sometimes i can attribute that to anxiety of googling, etc.. I'm very confident the leg issue can't be anxiety related, as I've seen a psychiatrist and they didn't medically think it was that. I'll get a big muscle twitch in my right bicep, then i'll fixate on it all day, and then i'll feel "weakness" The hardest part is just simply standing still, I suppose pressure is most constant when doing that. My feet also hurt when I wake up, both of them. Most of my symptoms are pretty consistent in both limbs, to a certain extent.

So the on-set was gradual, I don't even remember the expect condition it came in, just remember the slight struggle standing. Now, what is important to note maybe, it's completely bi-lateral, both legs feel the exact same in almost the same spots to this day
So I head back into my family doctor, we get more blood work done, xrays of my back etc. Notes were: L1/L2 mild spondylosis. L4-L5 moderate arthritic change involving the apocryphal joints "pedicles are intact" -- He really didn't even discuss my x-rays, at this point he sent me to a neurologist.

Weeks later, I had an appoint with a neurologist. He examined me up and down, looked at muscles, strength tests, etc. At the time of the appointment, I mentioned dizzy, weird eye vision (was anxiety) -- but he still believed to be no major neurological at play during the time of the physical evaluation. I pleaded for a test to be done, he agreed we could start with a brain MRI. All clear, nothing even major.

Second neuro appointment, he explained the MRI was clear, ruling out MS, etc. He didn't believe I had any neuropathy type stuff going on, as I never get tingling/numbess in the limbs. He was the only one to mention the x-rays about the lower lumbar findings, but still he didn't fully think it was anything neurological related. Unfortunately, I still fear for ALS, and it's something my brain won't let go, so I asked for EMG and MRI of my spine. Those are still pending and unknown times. The reason I fear ALS, my mom mentioned it. My uncle unfortunately passed away from the disease and I did bring this up, but apparently there are no true definitive links to it being something that runs in the family.

So next adventure, I went to a Chiropractor, he took x-rays of my back. He said my L4/L5 are subluxated, my hips were off, and he fairly confident he could fix my issues over several months. He wanted a ton of money for the treatment, so I went to another for a second opinion. This chiropractor was just a simple co-pay, he said let me check you out. He looked over, saw kinda what the other chiro did, but this one did some hip adjustments and spine. Now, in regards to "lower back pain" up unto this point, I never really felt any, but I definitely do now. Maybe it was always there, I was just use to it over the years (always kinda ached I supposed in lower back because of gaming for hours) Forgot to mention, I told the neuro this and he said he didn't think this would work and don't let them touch my spine.

In terms of the low vitamin D, a nurse practitioner in my family said it shouldn't be such a huge impact to someone in mid 30s at this point in my life, it should be corrected, but not the cause of someone my age. Who knows.

I can't reasonably say there's been any difference in the several months, but my overall "pain" I call it does seem to slowly be intensifying. I struggle daily to even stay standing, but it's not that I can't, it just seems to intensify and that's where I want to sit down. Nothing is "failing" per say, I can walk where-ever I do (limited amount I do because of this) stairs, etc. I also focus on every step, because each stride is "achy/painful" I always find sometimes in my steps they are a bit off, one stride might be a bit off from one foot to the other, causing a minor correction.

A little more history. I've been a pretty sedative person most of my life, bad posture, gamer, so the whole spine thing makes the most "logical" sense to me, but the most irrational thing my brain says is ALS, because I truly feel weak in my lower legs. I believe maybe I have "perceived weakness" who knows. Also, it's been very challenging to pin-point a person who has gone through this before, which surprises me, or maybe I haven't hit the right spot. I have this terrible thing I do i'll look at my legs and say "Oh my god, my right leg is smaller than left, and it's getting smaller" -- It would be natural for someone to muscle waste for the diet/inactivity I have, but I'm still not sure.

I also want to say I'm very grateful to come to this forum for advice. I'm sorry if anything wasn't clear, sometimes putting this into writing to make logical sense is difficult. I know most of the very amazing sticky information points away from this, but its my constant fear due to my family thinking/uncle. I know the MRI spine and EMG will definitely help, but I'm reaching out before-hand to reassurance or even comfort. I'm a father and I truly hope I can get answers/get better.

Again, truly thankful for any advice and help.

God Bless!
 
Dear gamer,

First off, please read this if you have not already done so: Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms!

I don’t see ALS at all in your post. I do see someone who is overweight, sedentary, sits a lot, has bad posture, anxiety, and some mechanical issues affecting the lower back. That’s a set up for the symptoms you are experiencing. You need a major lifestyle adjustment focusing on body mechanics, diet, and attitude. You’re young enough that you can turn things around, feel 100% better, and potentially have a long, healthy, active life ahead.

I would start by getting a physical therapy assessment. Your family doctor can refer you. The physical therapist will set you on a program to strengthen the muscles that extend your hips (glutes), and this will enable you to stand more comfortably. They can also help you with your posture and core strength. You’ll be amazed at how much better you will feel. Ultimately you’ll want to be going for a walk daily and doing a regular exercise program.

I’m not a big fan of chiropractic treatment. There are some good ones out there, but a lot of them miss the boat and can actually do damage. You need a program you can follow for life. I think with the physical therapy, a change in diet, and counseling, your prognosis is excellent.

There’s nothing wrong with gaming in moderation. 😉
Best of luck to you. There’s no ALS here.
 
Hello,

Sorry for the delayed response. I wanted to come back with more results.

MRI of lower back checked out, no disc damage. EMG of my entire left leg was clear. My latest symptoms are just pain, weakness. Hard to stand sometimes, like my legs almost want to buckle. I'm trying to workout etc, taking it slow, but just lots of pain. I feel like I'm at a loss, no doctor is really leading me anywhere further from this point.

I have this constant checking of my leg muscles, seeing if they get smaller. Ugggh :(
 
Hello,

Sorry for my return, but I just wanted some advice, because I wasn’t exactly sure what this meant.

I had a second neurologist check me out, however this time he found I was positive in the babinski test on my left leg. He ordered and mri of my neck/spinal area I believe, since my overall brain was clear.

Due to suffering from health anxiety in other aspects, I looked up babinski and then of course, ALS is in the picture for this. I definitely knew something was off with my left toes, they are always stiff at times.

No weakness found in his physical exam, I’m only on further pain. He is going to try Gabapentin. EMG was clean in July, done on my left leg.

Should I have any concerns? Also, thank you so much for the help.
 
Karen gave you a lot of excellent advice earlier. I am sure it would still stand, and I'd second it. A positive Babinski isn't suggestive of ALS absent clinical weakness that you fortunately don't have.

PT, exercise and weight loss would seem much more to the point than gabapentin, which has its own side effects and for which you have not reported an indication.

Best,
Laurie
 
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