Leg Weakness and Mobility Issues

@gaboslastresort Welcome to MayoClinic Connect. I’m sure some members will see your discussion and stop and give you some help and tips. I honestly don’t know what’s wrong and we can’t diagnose on MCC because we’re not medical professionals. I would suggest that you find a comprehensive medical center or a university teaching hospital near you. The doctors are usually a step above the community doctors. Just call. The operators will know where to send you. Don’t be surprised if there is a wait to be seen. That’s just the way it is. While you wait for an appointment, you can summarize your discussion for use with the doctor. You want just the main points that relate to the problem of not being able to use your legs. You might also want o follow this discussion group: Bones, Muscles and Joints: https://connect.mayoclinic.org/group/arthritis-and-joint-conditions-268850/ And you want to continue PT and do your exercises at home.
What, of all your symptoms, makes you think it’s an autoimmune disease?

Hi! I’m a 23F. Since mid-January, I have been experiencing symptoms in my legs including weakness down both legs, decreased range of motion, and lack of endurance which inhibits my ability to walk distances longer than a minute or stand for a couple minutes without getting fatigued/feeling like I just ran a marathon. As a result, I no longer drive. I also struggle getting down/up from the ground due to decreased range of motion/flexibility and can only go up the stairs one by one with my left leg leading and hold a rail going down one step at a time. These symptoms have significantly impacted my daily life.

Some background is I was having bad anxiety/consistent panic attacks in Dec/start of Jan. In mid January I did a Pilates workout targeting the legs (tons of squat variations including pulsing, calf raises, etc) and I instantly knew I overdid it when my legs were shaky and stairs were tough right after. Everyone has overdone it before, but it typically always resolves itself. For me, it became extreme DOMS, I had a heavy sensation as if bricks were weighing my legs down, and even lightly pressing my legs hurt. Probably irrelevant but I also got a really bad cold around that time. It’s as if my body freaked out with everything and somehow turned the DOMS into weakness that never got better.

Since then, I have seen a neurologist, rheumatologist, orthopedic dr., musculoskeletal dr., and primary and urgent care. All are stumped and don’t know what’s going on, saying it’s an unusual presentation and weird I have no other symptoms.

I have had an MRI on my lumbar spine and brain which were both clean and rule out MS. My EMG/nerve conduction came back normal. I have gotten lots of blood drawn 4 different times and everything is in normal range. From my autoimmune blood panel, only my ANA was positive (abnormal), but my neurologist said women often are positive even though they don’t have autoimmune disease. Mine was a speckled pattern and titer was only 1:80.

Since mid-February, I have been going to physical therapy 1-2 times a week and have seen slow, small improvements, but still not close to where I was before all this.

Since I struggle with walking a normal pace/cannot walk far before my legs feel completely wiped out, I only average about 1,000 steps a day if even, and my legs (especially my right which is worse), have visible muscle atrophy.

Any thoughts/suspicions on what's going on? Could my symptoms simply be caused by my lack of use and get better if I gradually start moving more or have someone stretch my legs each day? Or is it some rare autoimmune disease that got triggered from the leg workout/bad anxiety I was dealing with in January? Or does it sounds more like a muscular condition? Thank you in advance, I just want my life back.

I can’t believe I saw your post! Omg! I can’t provide any answers, except say that I had almost identical symptoms years ago when in my 40’s. I don’t think anyone understood just how stiff, sore and weak my leg muscles were. It was torture. I was very worried. I had all the tests you describe and they weren’t helpful except to exclude certain things like ALS, MS, etc. I saw Neurologist, orthopedic, primary, endocrinologist (have Type 1 diabetes), and rheumatologist who would have diagnosed me with polymyalgia rheumatica , except, she said I was too young, according to her. That theory has now been challenged from what I read. So, I never got an answer or diagnosis. I had other issues too, like frozen shoulders, muscle knots….anyway, they all resolved over time, even the sore, stiff, weak legs. Eventually, I was back to working out. Before it happened, I ran 3 miles a day, plus biking and strength training.

I hope you find answers. Be your own best advocate. Keep trying to get help. I gave up too early. Oh, also, ask for B12 test. That’s bit me from behind and I’m not sure how long I’ve had it. I’m suggesting to everyone, since I had no warning.

Best of luck with everything. I look forward to seeing what you discover. Take care!

Thank you for sharing! My B12 is okay (425 and the normal range is 230-1,050), but maybe I should start taking it cause it can't hurt.
May I ask how long it took your legs to get back to normal function? And how did it resolve, did you gradually start exercising more/walk more each day? Or was it medication?
It's been about 6 months of this for me. Granted, I have been very sedentary because when I overdo it with walking or at PT then I am super sore and wiped out for a few days after. It's just a delicate dance and so hard when I don't have a diagnosis/answers.

Thank you for the response! Yes, I will reach out to university/institutions in the hopes they take interest in my situation.
The weakness in my legs is what makes me think it could be autoimmune, especially since bloodwork and other tests were not pointing to anything nerve related or something else. My neurologist and several other specialists were suspecting that too, but I honestly am not sure if it is, as my symptoms did start rather suddenly after a workout, I don't have family history of autoimmune, and autoimmune bloodwork has returned negative for lots of various autoimmune markers.

You may have something different from me. But, I don’t recall all my tests. I do recall I had high inflammation. I have type 1 diabetes, hypothyroidism, and psoriasis. Most of my dad’s side of the family has autoimmune too, mainly rheumatoid arthritis, some lupus, psoriatic arthritis and Type 1 diabetes.

As I recall, my weak legs lasted about a year. The improvement was gradual. The strength took a long time to regain and I wish I had gotten PT for it. I might try myofascial release or some kind of hands on treatment. I would if it happened again. I wasn’t prescribed any med, except Ibuprofen. Maybe, I needed a med….idk.

I kept moving everyday though. It was very difficult to get off the couch or to get in snd out of my car. It was a struggle. I felt very scared and frustrated. But, I worked most days and was hardly ever out due to it. I pushed hard to keep going, but run my own law practice and had no choice. I would handle things differently today.

I certainly hope they can figure yours out. I know that kind of thing can be very stressful and painful. Please post your findings. I am so curious, as I’ve wondered what caused mine.

Sorry to read your post. These "Mystery illnesses" have a whole different level of concern for you. And we in our modern world expect to find answers: as @celia16 says, there sometimes just aren't.
But we must not be complacent. Well done you, for hunting down various disciplines in trying to sort out this scenario.
The one thing that jumps out is that "really bad cold". Have you had a Covid test. I believe at this point a blood test may be the only way to determine if you have had Covid. Perhaps another manifestation of "long-covid"?
The wonderful thing that you point out is this: "slow, small improvements". Yea, we want those symptoms to be gone, yesterday. But consistent, positive changes in the right direction is pure gold. You may already have found the key to eventually getting back to yourself.
Our own experience with this was my son, when 15, became very ill, a "mystery". At one point was diagnosis with a brain tumour wrapped around the hypothalamus"... with just a few months to live. ..... ! There was no tumour.
The final medical answer was: "we may never know what was wrong. but he is making very small gains. We hope this continues". His recovery took 3 years.
Today he is a tall, handsome 46 year old - and his mom's joy.
I so wish for you the same future. You are to be encouraged to hunt for answers and treatments. If you are in the States, why not go to a Mayo Clinic? Use every possible advantage to find answers.
Remember that for all the amazing advances in our medical 'modern' world, we have discovered so much more that remains to be discovered. Stick with your physio and celebrate each new improvement, no matter how small.
All the best. Let us know how your journey progresses.

@gaboslastresort
I would have them check your cervical spine. I had spinal cord compression and flattening which affected many things below c5-c6 (arms/hands/leg weakness and heaviness in legs when walking, bladder control affected, etc.). I needed to have ACDF surgery to relieve the pressure. It is an urgent issue to address because it can cause permanent injury to your spinal cord. Viruses can also wreck havoc on your nervous system. Did you ever have or get tested for mononucleosis (Epstein Barr), chickenpox, Covid, etc.)? You may want to look up AIDP/CIDP to see if your symptoms align and get testing for it (believe special bloodwork and spinal tap is needed). Best wishes getting answers…you are so young and need proper diagnosis and treatment.

Low B12 can cause leg weakness. I am battling this right now.

I would have your primary to check your B12 levels, CBC & iron levels.

I am walking as much as possible and doing leg exercises to try and get my strength back. It happened quickly. I am very careful when I am walking outside, getting in and out of a car and standing from a sitting position.

Praying for you to get better. Keep me posted. I care.

I developed some of the same symptoms about 4 months ago. I am 76 and have been fighting chronic pain for 8 years. These are new and puzzling. I just ran across an article regarding CIMP. or Chronic Inflammatory Myeliting(?) Polyneuropathy. May just be grasping at straws but worth a look.