Rapidly Progressing Leg Weakness

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nightOwl13

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Hello all, I would much appreciate your input on what's going on as I'm currently waiting for an EMG/NCS, but that's not for two months and my symptoms are worsening at a pace faster than that.

I'm 30F, and I'm having significant leg weakness that started in one leg and rapidly spread to the next.

I went to a neurologist on 11/2 because I had a single leg spasm that left my right leg feeling weirdly tight, and had burning pressure/pain on that side when sitting. I didn't expect him to find weakness in that leg but he did (4/5 hip flexor). Reflexes were all normal, Babinski absent, etc. He sent me for the full brain/spine MRI thinking that it could be MS. He ended up sending me to an MS specialist for some "suspicious" lesions in the brain MRI, but spinals were clear.

While I waited for the specialist appointment, I would walk around the house frequently as it hurt too much to sit. As time went on, I noticed the leg getting weaker, but I could still walk on it relatively alright. I started noticing a lot of twitches in both legs as well, but tried to ignore it.

The night before the specialist appointment (1/11), I had a terrible cramping pain shoot down the OTHER leg. 20 minutes later, as I was falling asleep, I had an episode that felt like my leg/foot was having a seizure, and after that that leg felt weak as well. I have to admit I cried when this happened, as up until this point I was trying to tell myself it was an entrapped nerve, but now I was significantly terrified of ALS. It honestly felt like a muscle died or something in my leg. I've also had intermittent fatigue/discomfort of my right shoulder as well as a squeezing sensation in my right inner elbow.

The MS specialist told me that I "definitely did not have MS", and that the lesions in my MRI are non-specific. He tested all of my reflexes, which were normal again. He tested my senses, which were all normal except for some mild vibratory loss in both legs. He did not do all of the motor tests that my general neurologist did, just had me walk down the hall and back and stand with my eyes closed. He basically said "I don't know what is wrong with you, but it's not MS". He suggested possible piriformis syndrome for my initial leg (and honestly, the initial symptoms did seem like it) and kinda just shrugged about the other leg and said "maybe it happened there too." I asked about ALS and all he said was "you are too young for ALS, maybe in 30-40 years." He wants to do EMG/NCS though, and thinks there may be something going on with my hips. He ordered a CK test, which came back on the low end of normal, and I'm awaiting the aldolase test results. The new neurologist wrote in his notes that "the weakness was not apparent" even though he didn't do the motor tests that initially found weakness in the first leg. His notes DID say that he suspects a neuromuscular issue "like piriformis or sciatica" despite no pinched nerves in my spine and bilateral piriformis syndrome being basically unheard of.

I'm currently at a point where I can only walk slowly. This was not the case two weeks ago. I cannot run. I pedaled on an exercise bike for maybe ten seconds before I had to stop, and my legs felt horribly jelly-like for the rest of the evening. The bottoms of my feet are constantly twitching, and they cramp frequently—the bottoms of my feet have always been prone to cramps though due to flat feet. I still have full mobility of the feet though, as far as I can tell. I have frequent twitches in my legs, but not constant like on the bottom of my feet. I have no more pressure pain when sitting, but the weakness in my hips is there and the weakness is a different kind of uncomfortable. I have moments where I get an overwhelming sense of "I need to change positions NOW" that comes with a rising sense of discomfort if I do not move. I feel the weakness mostly in my hips and quads. My lower back is mildly sore/burning, and I'm starting to get muscle twitches there as well. I've also lost ten pounds (which is a lot for me at 5'10", now 130lbs), but I have not been eating nearly as much as I should due to severe anxiety. I can't tell if I have muscle atrophy or not because I've always been extremely skinny to begin with, and my last year has been fairly sedentary due to the job I had.

So my questions are:

1. Has anyone here had ALS start in the hips/quadriceps? Everything I'm reading says it USUALLY starts distally, but can start with proximal muscles. My feet and ankles so far still have full range of motion, and I'm confused that all of my reflexes are still 2/normal across the board.

2. Is such a rapid onset (totally fine and mobile to significant weakness in both legs in a month) possible? If it was both at the same time I would be inclined to think it was something else, but it started in one and spread to the other). Days before this started I was able to do squats with my boyfriend, now I cannot imagine doing one.

3. Is the weakness that happens instant? And does spasming happen at the moment of loss? I don't know what happened with my second leg, but it was fine and strong one moment and then suddenly not after the strange spasming episode.

4: Pain? I know pain is not a direct symptom, but I don't know what else to think. My first leg had burning pain down the back of the thigh and in the hip for WEEKS, but now that pain is gone and only weakness remains. The other leg did NOT have the burning pain, only the initial cramping pain and then weakness.

5: CK test: I've read this is usually elevated in PALS but not always? Is it still possible if it's kind of low? I assumed mine is on the lower end because I'm skinny, but I also read that the CK drops in patients as they lose muscle mass.

6: Is there anything else this could be? At this point I'm hoping for like... functional neurological disorder or malabsorption or ANYTHING that isn't ALS or something similarly terminal. My B12 was fine though, so it isn't that at least. I'm so terrified and I'm afraid that by the time the EMG comes around in two months I'm going to be completely non-functional with how fast this seems to be spreading.

I know you guys cannot diagnose me, but honestly I feel like I'm running out of other things it could be, and Google of course has done a fantastic job of scaring me senseless. I'm only 30 and I know the likelihood of someone my age getting it is less but... The clinical weakness combined with the twitching is scaring me, and the fact that the neuro only gave "you're too young" as a reason for me not having it isn't necessarily comforting.

Thank you all for spending what time you have to respond to this.
 
Your last paragraph before... "Thank you all for spending what time you have to respond to this."

Says a lot.... really not leaving much to reply to. Maybe someone will recommend something.
 
Hi, sorry for what is happening.
I've had sciatica for over 40 years. It can be miserable.

Now to your questions:
1. no

2. no

3. no, but you really aren't describing clinical weakness. twitching/spasms really mean nothing.

4. pain - no, truly not

5. CK means nothing alone

6. hundreds of things it could be and you have even been given the 2 highest possibilities. I'm not sure why you won't believe that as they fit when ALS doesn't

You are not running out of things - you are googling yourself into a nightmare. Stop doing that.
Follow your doctors advice and concentrate now on sleep habits, hydration, nutrition, ergonomics (my sciatica responds hugely to what I do and how I sit), exercise, mindfulness and try some yoga/pilates for hip problems.
That will get you a long way.

All the very best.
 
Agree, there is so much on the table besides ALS. Among other things, I would be thinking of movement disorders like RLS/PLMD and post-viral syndromes. There could also be more than one condition at play.

Not eating isn't going to help any physical problem, and anxiety makes everything worse. I would seek counseling to help you through the diagnostic process.

Best,
Laurie
 
Thank you all so much for replying and for being so patient with me, as I know you guys get questions from anxious people all day long. I've been lurking the past few weeks, afraid to post anything myself.

I have a few more questions, if it's not too much—I thought clinical weakness was weakness found during a clinical exam? My general neuro found weakness that I wasn't even aware of initially in the first exam. As well as the whole "I suddenly can't do this thing that I could do previously"? Am I misunderstanding what clinical weakness is? I can accept that perhaps the other leg is not clinically weak as it wasn't tested in the same fashion as the other one was.

I was totally on board with the sciatica/piriformis syndrome diagnosis until the other leg went weak without pain and the fact that there were no pinched nerves in my spine. I thought that there was always pain, and that it was always only in one leg. I will try to reassure myself further that that may be all it is.

I really do appreciate you guys giving extra insight into why you feel it's likely not ALS, besides just "you're too young for it". It seems like a small thing, but it does help. Hearing that it doesn't start proximally helps.

In the meantime, I'll focus on eating better and perhaps talking to my PCP about possibly having malabsorption issues. I am aware that I have severe anxiety, and unfortunately I have the purely somatic kind, so I will pursue help for that as well. Thank you all for being so lovely, and I'll post back when I have my EMG results with hopefully good news.
 
Starting in the hips/quads is what you asked about concering weakness and the answer is no, most unusual for ALS. We expect it to start with foot drop.
As I said, I have had sciatica for years, and I get it both sides at different times, worse on one side. Sometimes a leg can just give way without pain.

Please, take all this to your doctor, they can discuss all your concerns in light of your examinations. Really, the more 'ideas' you give your doctor on what you think it might be (even if some were suggested here), the longer your diagnosis might take as you can take the doctor away from what their findings were directing them to.

Be the patient, not a google expert and talk to your doctor about all concerns and changes.

All the best.
 
No matter what it turns out to be, you need to put some weight back on. You will definitely have atrophy if you continue to lose weight. Try some protein shakes in the morning to start your day. Add some good fat like avocado or even extra virgin olive oil to up the calories. I make a yummy chocolate health shake each morning with Greek yogurt, walnut milk, berries and raw cocoa. I sweeten it with allulose and a banana. You might also want to get a counselor to help you cope with going through the diagnostic phase.

It doesn't sound like ALS but none of us here are doctors nor do we know your body like you do.

Best wishes for an outcome that can be quickly treated.
 
Just a clarification that not all ALS starts with foot drop, and there are some forms of proximal onset, but as we have said, your picture does not resemble ALS.
 
I never said all ALS starts with foot drop, in case that is the statement that needs clarification. I do try to choose my words carefully so that I am not making black and white statements but I will pay more attention to the detail.
 
Hello all, I was able to get in early for my EMG/NCS—holy crap was it painful. I don't have access to the graphs but I do have access to the summary.

I have a telehealth appointment February 8th. They wouldn't test my arm that had pain because the order only mentioned leg weakness, and they mentioned there was some atrophy in my ankle(s?) Not sure if they said just one or both because there was some cross chatter going on between the doctor and the trainees.

Am I in the clear for ALS if the EMG was normal? The mention of "motor axonal neuropathy" in the NCS has me scared, and I don't really know the difference between UMN and LMN, or if one appears before the other. The doctor performing the test would not tell me anything and said it was up to the doctor to interpret.

Thank you all for your time.
 

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Your EMG, which they did in both legs, is normal, which, given your issues, rules out ALS. Your nerve conduction study suggests that one of the nerves in both your legs (R>L) has been damaged which is pretty common, and can relate to how you sit/work, such that PT or different shoes/inserts might help your legs. Your physician should discuss a plan with you.
 
Thank you SO much for replying. I really appreciate everything everyone on this forum is doing to help people sort through these things and assuage their fears.

What is a good way to support/give back to the ALS community? I will donate, of course, but I'm wondering if there's also another way that the community could use help.
 
Fantastic news. I mean, you have damage there, but it can be addressed.
 
Hello everyone, I have good news and just wanted to post here one more time in case it helps anyone else dealing with a situation similar to mine, or anyone second-guessing doctor decisions.

I ended up being sent to the ER by my doctor because he thought I had nerve vasculitis based on my EMG/NCS results, and said I needed to start Cytoxin (chemotherapy drugs) right away. However, once I got to the ER, none of the neurologists there (7 total examined me) could find evidence of any damage whatsoever in their clinical exams, and certainly not the kind the nerve study showed. At this point, I could barely walk (needing to use canes for everyday and wheelchair for long distance), BUT I was passing the strength tests that I had previously failed at the first Neuro, despite being in far worse condition. They kept me overnight, did all kinds of blood tests, and then sent me home with no idea what was causing my walking issues.

I ended up going to Mayo Clinic and seeing a neuromuscular specialist (coincidentally one focusing on ALS outcomes) and they pegged RIGHT AWAY what it was in the first appointment. She did a second EMG/NCS to be sure, which said I had no nerve damage, and the "bad" signal was reading a minor foot injury (she saw an abrasion scar on my foot) I had received MANY years ago, as well as abnormal muscle formation from flat feet.

I have post-viral syndrome—a mild fever caused my brain to short-circuit and get stuck sending incorrect motor signals to my legs. So I need physical therapy to remind my brain how to walk, but I will eventually be okay. I wanted to share this to assure people who feel that the clinical exam or EMG "missed" something:

The EMG/NCS picked up an old, healed injury in my foot from over TEN years ago. The doctor only knew this because she saw a scar on my foot, and my clinical exams did not match the type of nerve damage the test showed. The fact that I passed the exam, despite struggling to walk, ruled out ANY neuromuscular damage (keep in mind that I failed the exam at first!). They really can see everything from the clinical. The clinical saved me from being given unnecessary chemotherapy drugs, which would have happened if they just looked at the test results. I still cannot walk on my own due to leg weakness, have painful muscle cramping and twitching, but even then it's not ALS.

I hope this can reassure some people who feel like the doctors or tests missed something. The odds are far more likely that they will find something that isn't even affecting you anymore. And if your clinical evaluation is good, then you are absolutely in the clear. The only time a clean EMG can't be trusted is if there are signs in your clinical. The exam is absolutely the most important test.

Much love to you all, and thank you so much for the support through this difficult journey!
 
Thank you for sharing. Best of luck with your recovery
post viral syndrome has always been one pf the things we see here. With long covid it is even more common
 
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