Leg Weakness and Mobility Issues

Posted by gaboslastresort @gaboslastresort, Jun 29, 2024

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.

Profile picture for hettingr @hettingr

@altabiznet Don't wait to find someone to take this seriously. We had an experience where the (new, young) primary doctor knew it was CIDP. We said it was getting worse, he said something on the order of " when you can't feed yourself, that's when I want to know." So we went home, and long story short, within a month or so, F couldn't feed himself, needed ventilation, was in line for a trach. We were lucky someone turned it around, largely because a family member insisted. It's a year later and progress is close to where it was previously.

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@hettingr

Thank you for sharing. What was the treatment that turned it around and what kind of doctor administered it? A neurologist?

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Check out Miasthenia Gravis. It’s an auto immune disease. My husband’s first symptom was weak legs. You need a blood test to diagnose it. Your neurologist should know. If s/he doesn’t, find another one.

Another thought is Fibromyalgia. Speaking from experience I know it can make you very weak.

Good luck to you. I hope you find an answer.

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Profile picture for Alta Net @altabiznet

@jarrell1

If you do not mind sharing, how did your CIDP start? Any other conditions that you may have?
What is your level of physical activity? Can you walk one block, do you drive, do you cook, can you do light laundry? Can you work on the computer? How did your condition change within the past 15 years?

Any insight is much appreciated, as I have similar symptoms and my doctors do not know what it is.

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@altabiznet feet started getting numb back in 2011 but not bad . 8-10 different doctors over the years had different ideas. There are 4-5 types of cidp and ever one
if different, I never was so bad i couldnt walk. Im 69 male
since 2022 ive tried ivig, rubxtex, steoroids. been on Vyvgart for about 15 weeks best my legs and feet have been in years. I only have numbness in feet and legs
no problem with hands.one of the biggest problems is cipd is so rare doctors are not aware . A lumbar punture should give results on cidp. anything else just ask, keep fighting

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Profile picture for jarrell1 @jarrell1

@altabiznet feet started getting numb back in 2011 but not bad . 8-10 different doctors over the years had different ideas. There are 4-5 types of cidp and ever one
if different, I never was so bad i couldnt walk. Im 69 male
since 2022 ive tried ivig, rubxtex, steoroids. been on Vyvgart for about 15 weeks best my legs and feet have been in years. I only have numbness in feet and legs
no problem with hands.one of the biggest problems is cipd is so rare doctors are not aware . A lumbar punture should give results on cidp. anything else just ask, keep fighting

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@jarrell1

Thank you. This is very helpful. If you do not mind, two more questions.
- Do you have any swelling around the ankles and toes with this condition?
- Also, do you have vasculitis, something that looks like reddish-purple toes and/or purple spots on the skin?

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Profile picture for sickofpasswordsu2 @sickofpasswordsu2

My first question is: Are you on any medication? I am asking because when I have a reaction to a drug, my muscles are hit big time. My neck, arms, legs become weak and have very limited movement - and the spasms as well as trying to turn my head is very painful. The CK sometimes is normal, but the SED and the CR are sometimes elevated. I am trying to get some pharmaceutical genetic testing done to see if my reactions (for the muscles) are a result of an impaired drug transport system. Like you, my ANA is high - over 1250 but everything else in the autoimmune area is fine.
BTW, even OTC drugs can affect the same way.

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@gaboslastresort and @sickofpasswordsu2 As for wondering about your medications causing leg weakness. I found out that they can cause problems with your muscles. You might see if you can make an appointment with your pharmacist and have a discussion about the side effects and interactions of the drugs that you are on. Drugs do wonderful things for us but they also cause problems!

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Profile picture for Becky, Volunteer Mentor @becsbuddy

@gaboslastresort and @sickofpasswordsu2 As for wondering about your medications causing leg weakness. I found out that they can cause problems with your muscles. You might see if you can make an appointment with your pharmacist and have a discussion about the side effects and interactions of the drugs that you are on. Drugs do wonderful things for us but they also cause problems!

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@becsbuddy
Thanks for your response. I have already completed those steps - no help. I found 2 reports that actually matched and explained my symptoms in -
Physiological Reviews Review Article
MUSCLE TOXICITY OF DRUGS: WHEN DRUGS
TURN PHYSIOLOGY INTO PATHOPHYSIOLOGY
Another study: https://pmc.ncbi.nlm.nih.gov/articles/PMC3110519/ goes into the CYP transports and how it affects the patient with an impaired system. This particular article breaks down some of the most important CYP’s transports etc. Since my mothers side of the family has issues with drug tolerance (cousins, second cousins) I think it has a possibility of a genetic oopsey.

I am in the process of having my CYP transport system genetically tested for any mutation(s) that impairs this system. Unfortunately the tests only cover some of the CYP's systems - the main ones - but its a start. Finding a Clinical Genetics Doctor in this area is very rare- but hopefully I can have this test soon. I am tired of the pain and paralysis and tired of the Doctors just shrugging or shaking their heads on this issue - as well as one Dr. telling me no one wanted to treat me because of my allergy/intolerance drug list - they were afraid of getting sued.
I hope these reports help - they are not from AI or from undocumented sources - Good luck!

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Profile picture for Alta Net @altabiznet

@jarrell1

Thank you. This is very helpful. If you do not mind, two more questions.
- Do you have any swelling around the ankles and toes with this condition?
- Also, do you have vasculitis, something that looks like reddish-purple toes and/or purple spots on the skin?

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@altabiznet i have had swolling legs before but noy now
i think the monthly steroids helps with that. my circulation is good and I dont have any spots on feet.Where are you located?the cold weather does make a difference with feeling in the legs

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Profile picture for jarrell1 @jarrell1

@altabiznet i have had swolling legs before but noy now
i think the monthly steroids helps with that. my circulation is good and I dont have any spots on feet.Where are you located?the cold weather does make a difference with feeling in the legs

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@jarrell1
You are making a good point regrading cold weather. I am located in cold climate, and this extremely cold winter is making my joint stiffness and vasculitis worse. Thank you for sharing your insights.

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Profile picture for caroldee1 @caroldee1

It’s my 1st day on this site, so forgive me for not knowing all of your details. Pls accept my hug.

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@caroldee1 Welcome to MayoClinicConnect! No need to apologize. We were all new at one time. Do you have an autoimmune disease the you have some question about?

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Hello,
At your age, I can well imagine how stressful this is for you. Have any of your doctors mentioned the possibility of MS? I am not for a minute suggesting you have this. I’m simply wondering because it is a very difficult one to diagnose and there is no specific test for it. Indeed, this is rather perplexing given all your tests. You may want to try a Functional Medicine Facility for further investigation? Did you have any recent inoculations or new medications or supplements? Do your own research until you have exhausted all possibilities. While the jury is out on AI (?Friend or Foe) it is a useful tool in finding answers doctors often don’t know or don’t have the time to investigate. AI hold far more information than a human which is where it is helpful. Sometimes it is simply finding that one individual who may hold the key to your malady.
I wish you all the best in finding the answers and your journey to better health and wellness.
Warmest Regards.

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