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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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@larochka81 It took six months to a year for it to work on my balance, dizziness, CIDP and motor neuropathy. Mine is autoimmune. I am predosed with 125 mgs of sol-medrol aka cortisone before each infusion by IV. I take Bayer baby aspirin in the morning and at night to help prevent blood clots for the week of the infusion.
It takes six hours to infuse. Sometimes longer if we have to slow the infusion sometimes my mouth breaks out. I have a port. I am a very hard stick. 1 take one 500 mg Tylenol and 2 Benadryl before infusion starts for three days. There is a predose when you first start it for five days then you go to every three days. I take 60 grams/600 ml. I get infused three days a month on the Panzyga. Mine wears off by week 3 looking at having it changed to every three weeks verses every four weeks. I took IVIG from age 10-18. I was told I should have remained on it after age 18. I can finally sign my name. Due to the motor neuropathy my tremors were so bad I could not write. I can walk without assistance until week three. Then my balance starts acting up. It also gives me more strength in my arms and legs. I would be lost without and it helps my sinus infections.
The neuropathy is severe axonal sensorimotor peripheral polyneuropathy, small fiber neuropathy, dysautonomia and CAN ( cardiac autonomic neuropathy) my BP goes everywhere and I have bradycardia/tachycardia your heart beats too slow or too fast , dystonia (muscle spasms) and CIDP. My body does not regulate my body temperature. I stay either freezing or hot.
My autoimmune causing the neuropathy lupus, mixed tissue disease, Hashimotos and Sjogrens. It does not work immediately. It has to build up in your system. It wears off at three weeks for me. I have muscle atrophy from the neuropathy and autoimmune problems. Every two weeks how many days? Mines every three days that’s a total of 1800 mls total. 600x3 days =1800. So are you only getting 600 mls for a day and wait two weeks and do you get predosed with cortisone through your IV? The cortisone helps I have seen a big difference my son has severe traumatic brain injury from a drunk driver hitting his motorcycle. On week three I have problems turning him and changing him. I noticed the change in balance on my third dose. I also do not get sick as often. It’s a crash and burn for me on week three. You can take it every three weeks for three days or every four weeks for three days.
Targeted Conditions: IVIG is primarily used for autoimmune neuropathies, including CIDP, GBS, and MMN. It may also treat vasculitic peripheral neuropathy.
Effectiveness: Studies show roughly 65% of patients with peripheral neuropathy report pain relief from immunoglobulin treatment.
Administration: Typically given at a dosage of 2g/kg, administered over 2-5 days in a daycare unit. A maintenance dose of 1-2g/kg may be given every 3-4 weeks.
Side Effects: IVIG is generally well-tolerated compared to steroids, with lower risks of serious adverse reactions.
Efficacy and Considerations
While successful for autoimmune nerve damage, IVIG shows no significant effect on pain for all types of peripheral neuropathy, specifically painful Idiopathic Small Fiber Neuropathy. A trial of IVIG is often recommended to determine individual patient
Your first dose is called a loading dose. 600 mls for 5 days.
Then every 3 or 4 weeks 600 mls a day for 3 days. You have to be given the loading dose then depending on you every 3 or 4 weeks. It talks about the loading dose on the chart. 2grams/kilogram of weight
https://labeling.pfizer.com/ShowLabeling.aspx
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1 Reaction@itsmeagain thank you so much for sharing . . . I have various autoimmune conditions but am starting to show more neurologic signs (tremors, weakness, hyperreflexia). Rheumatologist is concerned that I am pre-something neurologic and was thinking spinal tap for me, but I now have a clot in my brain so coming off blood thinners to do the spinal tap isn't on the cards.
Do you mind further sharing whether there were other tests that you did that confirmed the CIDP or were they all negative and it was finally the spinal tap that definitively diagnosed it? I have had 6 brain MRI's in the last few months, 4 sets of neurologists, 2 teams of MS specialists and they all concur it's not MS and it's autoimmune in nature . . . but nobody is quite sure what is going on right now. My rheumatologist believes something is brewing it's just early on enough not to show on imaging. I'm so frustrated 🙁
@pm56
@itsmeagain
Well I had nerve conduction tests but one told that the spinal tap is the final determinant. I had two of them.
It’s a rare and crazy disease with symptoms and actions that can vary from time to time.
I’m learning to walk again and getting Iv treatments twice a month. But lots of numbness, tingling, and some pain.
It affects everyone differently and I’m 83 so that’s probably why I have apparently reached a plateau and don’t seem to be improving any more. It’s a nasty affliction but a lot of people reach remission or recovery.
I certainly wish you the best in your journey.
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1 Reaction@itsmeagain thank you for the information. I hope the IV treatments help. I’m scheduled to start SCIG soon and hope it will help me too.
Best,
Pauline