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Leg Weakness and Mobility Issues
Hi! I’m new here and am sharing my situation in hopes one of you have heard of something similar to what I'm going through. For reference, I’m a 23 year old female. 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. 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 lack of use and get better if I gradually start moving 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.
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You might put the results of your MRI on A.I. or ChatGPT. A.I breaks down the results in Layman's terms and can be better understood. I put my results in from a past MRI and found out that my symptoms were from a pinched nerve in my spine at the L4-L5. It has been pinched for many years as I had no idea as it started with a "catch" in my knee. I have had neurological symptoms for many years and was told that it was a possible autoimmune disorder. I will be having a fusion surgery to fix the pinched nerve and other issues in my spine.
Best of luck to you.
Angie
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2 ReactionsI am on IVIG and take Panzyga. My balance problems have gotten a lot better. As far as mobility mine is caused by autoimmune problems so I am not sure anything will help with mobility issues. I walk with two canes that wrap around my arms. Depending on the floor depends how slippery the are.
My more neuropathy has gotten better. I can sign my name and my strength has increased..
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2 Reactionsgaboslastresort,
I am so sorry to hear about your physical challenges. The first paragraph of your story sounds very familiar to me. My only question at this time is: Are you on a statin, normally for cholesterol control? I have a very rare condition that affects 2-3 people in a million that was diagnosed in October 2024. The name of the condition is necrotizing autoimmune myopathy. High levels of 'Creatine Kinase (CK), S', 'Aspartate Aminotransferase (AST), S', 'Alanine Aminotransferase (ALT), S' were key initial indicators used to identify it in my case. I am in remission and have regained a great deal of my lost function with the excellent treatment I have received at Mayo. I wish you all the best in your journey to find answers.
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3 ReactionsI have a perplexing situation that I need help on. I was recently admitted to the hospital with profound weakness of both legs, mostly in right leg. Felt like jellyfish, and I could not walk at all. Never felt like that before. Attending Neurologist at hospital tried a 2-day course of IVIG. Remarkable improvement over 2 days. I could stand and raise my legs 90 degrees. I was discharged back to my routine neurologist as I returned back to nadir, and could not walk nor stand. That continues today, and has gotten progressively worse. My routine neurologist opts to “continue to monitor and continue pain management”. I also am in a lot of daily pain in these legs for which I take a full daily dose of Pregabalin. I have sent my medical records to a neuromuscular Dr. at a large University medical setting.
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2 Reactions@johnlagejr
Hi gaboslastresort,
I’m so glad to hear that you received excellent care at the Mayo Clinic.
Necrotizing autoimmune myopathy (IMNM) can be extremely debilitating if it’s not identified and treated early. While it is not a directly inherited genetic disorder, certain genetic factors—particularly the HLA-DRB1*11:01 allele—can significantly increase susceptibility. This risk appears to be higher when individuals are exposed to specific triggers, such as statins.
I carry the HLA-DRB1*11:01 allele myself and therefore need to avoid statins. Unfortunately, many healthcare professionals are still not fully aware of this association.
Actually, while there is no known cure, prompt treatment can lead to significant improvement, according to this YouTube video. https://www.youtube.com/watch
Wishing you continued strength and the very best in your recovery.
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1 ReactionHi - did you figure out what was wrong? I have same issues and no one can figure out whats wrong.
have they tested your muscle enzymes?
@itsmeagain
I have a very similar problem-CIDP which is determined by a spinal tap.
@rutgersmom123 , how is that done?
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1 Reaction@artemis1886
How long and what dose of IVIG you’ve been on?
I just started last week 4/3/26 60g, supposed to be twice a month.
I’m not sure I’m feeling any different, regarding regaining my muscles strength, it’s tone, which is completely gone, casing severe spasms increase I’ve been suffering from for the past three years leading me to the state where I’m now, became bedridden mostly with the exception of the PT in home 3 times a week.
Not sure what to expect from IVIG, since I’ve received my first dose last week my muscles got even weaker. Although I’ve been taking benzos for the past three month prescribed for the muscles spasms initially, first Xanax then switched to Clonazepam due to the sever X side effects, drug induced Dystonia, muscles tone Disoder, it’s total loss. I’m desperate to get off it, although it seems almost impossible right now due to the horrific rebound, withdrawal it causes when I’m trying to taper it.
Not sure what to do at this point, feeling hopeless.