Leg Weakness and Mobility Issues

Posted by gaboslastresort @gaboslastresort, Jun 29 5:31pm

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.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Hi @gaboslastresort so sorry to hear you're going thorough this. I have been trying to get a diagnosis for years, sometimes it just takes a while to find the right dr and right tests. Have they assessed you for Myasthenia Gravis? There are a few specialized blood tests they can do. Also, 5% of MS patients have no visible lessons on MRIs, but it doesn't sound like this to me, because it started with an event. Although the anxiety may be the actual event that triggered this, not the workout, so I wouldn't rule it out. I agree with the other comment. Did you have any experimental medications or vaccines around that time? Doctors are looking the other way when people show up with strange symptoms within days of taking it, which is a sad comment on our medical system, but the stories are out there, so it's real. I also had a similar reaction to a popular antidepressant, extreme weakness in my right arm and leg wasn't able to even use my phone with my right hand. After 7 days off that, I stopped the med, and all returned to normal. Best wishes and how they figure you out. Keep fighting.

REPLY

Hydroxychloroquine helped me for a long time to use stairs and releave pain.
This is one of Lupus meds that do not get in your way of having children as young as you are.
I have 3 kinds of Lupus, most diagnosed over time.

REPLY
@slkanowitz

I had symptoms of CIDP for years and had normal EMGS x 3. It wasn’t until the 4th EMG that nerve damage showed up. A spinal tap sometimes shows high protein but not always. There are special autoantibodies against myelin and other nerve cell proteins that may be done on serum but only the neuromuscular specialists order those. You need a NM specialist who will take a stand based on your signs and symptoms even if all tests are normal. That is what is meant by a “clinical “ diagnosis and someone who has seen it enough times won’t require proof. I wish everyone going through this luck and strength.

Jump to this post

Thank you for sharing. I am going to schedule an appointment with a neuromuscular dr, but my rheum told me the ones she'd recommend are already booked til fall. I may just have to wait til then, feel like it's impossible to get appointments without waiting months.

REPLY
@supernat10

Hi @gaboslastresort so sorry to hear you're going thorough this. I have been trying to get a diagnosis for years, sometimes it just takes a while to find the right dr and right tests. Have they assessed you for Myasthenia Gravis? There are a few specialized blood tests they can do. Also, 5% of MS patients have no visible lessons on MRIs, but it doesn't sound like this to me, because it started with an event. Although the anxiety may be the actual event that triggered this, not the workout, so I wouldn't rule it out. I agree with the other comment. Did you have any experimental medications or vaccines around that time? Doctors are looking the other way when people show up with strange symptoms within days of taking it, which is a sad comment on our medical system, but the stories are out there, so it's real. I also had a similar reaction to a popular antidepressant, extreme weakness in my right arm and leg wasn't able to even use my phone with my right hand. After 7 days off that, I stopped the med, and all returned to normal. Best wishes and how they figure you out. Keep fighting.

Jump to this post

Thanks for your response. I believe Myasthenia Gravis was tested through my EMG/nerve conduction which was normal, and I have gotten so much bloodwork done (a lot specifically for various autoimmune) and all falls within normal range.
Yes, I'm wondering if the major anxiety paired with the intense leg workout just somehow threw my body into overdrive and it's not actually something seriously wrong. Just not sure if it can be repaired with only time/strengthening exercises, but I am seeing slight improvements since January when this all started like able to do more exercise reps, not such a heavy feeling in my legs, and some improved range of motion so I guess that's good it's not getting worse.
I did not have any vaccines around then. Only medication was this estradiol topical cream (not oral) but I only used for like a month and ended in November. Honestly wonder if that triggered my anxiety though since it contains estrogen and I think I am sensitive to any slight changes in my body/hormones.

REPLY
@hammock117

Hydroxychloroquine helped me for a long time to use stairs and releave pain.
This is one of Lupus meds that do not get in your way of having children as young as you are.
I have 3 kinds of Lupus, most diagnosed over time.

Jump to this post

Interesting! I was tested for Lupus multiple times but that ended up being ruled out for me.

REPLY
@ginger3344

Yes CIDP and most likely from the Covid Vaccine! UCLA nueromuscular is fast and great! They are honest about the fact that they see a lot more of it. Mine started a few days after the Vaccine , i started falling down and lost strength in my left knee, which would just give out and Down I went... It started in my left leg and they thought it was a spine problem . After fusing S-1
L-5 and L-4 and L-3 it just got worse over the next few months. At first local (Ventura CA.) docs thought it was GBS and started me on IVIG which helped some < 44 infusions for 4 hours each) Dr. Trikamji. put me on the rituxan (rituximub) and I am able to walk now with a cane.

Jump to this post

Interesting! I did not have any vaccine around that time, so mine must be something different but thank you for sharing. I will definitely schedule an appointment for a neuromuscular dr as soon as possible.

REPLY

Just to be thorough in your work up, muscle weakness, especially brought on by increasing muscle use, can be a sign of myasthenia gravis. It is another autoimmune condition that usually causes drooping of upper eyelids but not always. There are two antibodies in serum that can be tested ( AChR and MuSK) that a neurologist would order. Simple and worth crossing off the list of possibilities.

REPLY
@gaboslastresort

Interesting! I did not have any vaccine around that time, so mine must be something different but thank you for sharing. I will definitely schedule an appointment for a neuromuscular dr as soon as possible.

Jump to this post

Some reports are many months for the autoimmune thing to kick in,,,

REPLY
Please sign in or register to post a reply.