Loss of strength in the legs after a virus

jason30

Senior Member
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561
Location
Europe
Hi all,

I have an annoying complaint for 6 years that I am still investigating to see what the cause is.
I get no strength in the legs, instability, so bad that I can no longer walk/stand on my legs.
Been to physiotherapy and physically there seems not much wrong.

After years I can be certain about 2 triggers, these 2 things triggers the instability and no strength in the legs directly!
The 2 things which causes it:
  1. When I get a virus (flu)
  2. When I am exposed to pesticides, and sometimes toxins.
When these 2 things occurs, then it's there and I can make it worse with certain body positions (such as spreading the legs).

Above 2 things have an agreement: immune system. I know pesticides affects the immune system as well.
I suspect there is something that comes up / flares up when the immune system is busy with other things (virus, pesticides) or been suppressed.
Then I wonder what can cause no strength in the legs and instability?
Multiple Sclerosis? Spinal cord issue?

Supplements that helps are things which boost the immune system (lysine, vitamin C, zinc).

Does anybody recognize this, maybe have some experience or have tips to look for?

Thanks for thinking along.
 

bad1080

Senior Member
Messages
436
when i am bad i get something that feels like my knee jerk reflex isn't working properly. my leg doesn't stay "under me" but instead it's giving way, not to the point of me falling but definitely to the point where i am unsteady and need to hold on to something (even worse with dizziness).

changes in gait are a common symptom of me-cfs:
https://me-pedia.org/w/index.php?search=gait&title=Special:Search&fulltext=1&ns0=1&ns4=1&ns6=1

but they could also be a sign of other neurological problems and should be discussed with a neurologist.
 

linusbert

Senior Member
Messages
1,758
i have since half a year since i got a new mattress problems that in special positions, some muscles can get partially or completely disabled for a time. i had it with my leg a few times and also my arms. it feels similiar to when limbs fall asleep.
i generally have the feeling limbs fall fast asleep in certain positions
 

Violeta

Senior Member
Messages
3,421
I am not saying you have Lambert-Eaton Myasthetic syndrome, but this might give some clues about your problem.

"As a result, the release of the acetylcholine neurotransmitter is reduced. "

Sar-CoV-19 can affect the receptors, I don't know about other viruses.

Organophosphates are a class of chemical compounds, often used as pesticides and nerve agents, that inhibit the enzyme acetylcholinesterase, leading to a buildup of the neurotransmitter acetylcholine in the body


Lambert-Eaton Myasthenic Syndrome​


https://www.ncbi.nlm.nih.gov/books/NBK507891/

Limb paralysis refers to the loss of the ability to move one or more limbs due to disruption of nerve signals between the brain and muscles. This disruption can occur due to various causes, most commonly affecting the nervous system. Limb paralysis can be temporary or permanent.
 

pamojja

Senior Member
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2,754
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Austria
Above 2 things have an agreement: immune system. I know pesticides affects the immune system as well.
....

Supplements that helps are things which boost the immune system (lysine, vitamin C, zinc).

Does anybody recognize this, maybe have some experience or have tips to look for?

Lysine and Vitamin C in therapeutic doses above 6 g/d did greatly improved my walking disability from PAD, due to a 80% stenosis at the abdominal aorta bifurcation. Along with comprehensive supplementation and life-style changes. Zinc I was very deficient too.

As in your case, I would start with an all-out support for the immune system, and for blood circulation delivering those factors there. As a first step, investigating further.
 

Violeta

Senior Member
Messages
3,421
Supplements that helps are things which boost the immune system (lysine, vitamin C, zinc).
Zinc and nicotinic receptors.

Zinc potentiates neuronal nicotinic receptors by increasing burst duration​



https://pubmed.ncbi.nlm.nih.gov/18094103/

Lysine and nicotinic receptors

Lysine residues play a significant role in the function of nicotinic acetylcholine receptors (nAChRs), particularly in the ligand binding site and channel gating. These receptors are crucial for neurotransmission in the nervous system and are activated by the neurotransmitter acetylcholine (ACh). Lysine, specifically, has been identified as a residue that can influence the affinity of nicotine binding to certain nAChR subtypes
 

Zebra

Senior Member
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1,112
Location
Northern California
Then I wonder what can cause no strength in the legs and instability?
Multiple Sclerosis? Spinal cord issue?

Do you have access to a general neurologist or can you get a referral to one?

It sounds like you need an old-fashioned neurological evaluation to differentiate between a disorder of the spinal cord vs a disorder of the peripheral motor nerves that innervate your legs.

Best of luck to you! 🤞🏻
 

jason30

Senior Member
Messages
561
Location
Europe
when i am bad i get something that feels like my knee jerk reflex isn't working properly. my leg doesn't stay "under me" but instead it's giving way, not to the point of me falling but definitely to the point where i am unsteady and need to hold on to something (even worse with dizziness).

changes in gait are a common symptom of me-cfs:
https://me-pedia.org/w/index.php?search=gait&title=Special:Search&fulltext=1&ns0=1&ns4=1&ns6=1

but they could also be a sign of other neurological problems and should be discussed with a neurologist.
that is not pleasant, is it constantly present or are there better and good moments?
Will ask the doctor to send me to a neurologist.
 

jason30

Senior Member
Messages
561
Location
Europe
i have since half a year since i got a new mattress problems that in special positions, some muscles can get partially or completely disabled for a time. i had it with my leg a few times and also my arms. it feels similiar to when limbs fall asleep.
i generally have the feeling limbs fall fast asleep in certain positions
That's a coincidence that you mention that, because I've been keeping a log since the beginning and the virus is something that triggers it. But there were also 2 times that the mattress played a role, especially with the heat then the latex mattress sinks more and I have less support in the back. I'll see if a new mattress offers improvement. Thanks for thinking along.
 

jason30

Senior Member
Messages
561
Location
Europe
I am not saying you have Lambert-Eaton Myasthetic syndrome, but this might give some clues about your problem.

"As a result, the release of the acetylcholine neurotransmitter is reduced. "

Sar-CoV-19 can affect the receptors, I don't know about other viruses.

Organophosphates are a class of chemical compounds, often used as pesticides and nerve agents, that inhibit the enzyme acetylcholinesterase, leading to a buildup of the neurotransmitter acetylcholine in the body


Lambert-Eaton Myasthenic Syndrome​


https://www.ncbi.nlm.nih.gov/books/NBK507891/

Limb paralysis refers to the loss of the ability to move one or more limbs due to disruption of nerve signals between the brain and muscles. This disruption can occur due to various causes, most commonly affecting the nervous system. Limb paralysis can be temporary or permanent.
thank you, I will look into that further
 

jason30

Senior Member
Messages
561
Location
Europe
Lysine and Vitamin C in therapeutic doses above 6 g/d did greatly improved my walking disability from PAD, due to a 80% stenosis at the abdominal aorta bifurcation. Along with comprehensive supplementation and life-style changes. Zinc I was very deficient too.

As in your case, I would start with an all-out support for the immune system, and for blood circulation delivering those factors there. As a first step, investigating further.
Thanks.
I have similarities with PAD but what is characteristic for me is the loss of strength in the legs and the instability, it is an unreal feeling that you are no longer able to walk further in the shop.

Apart from the immune system I am also looking for options now for more blood circulation.
 

jason30

Senior Member
Messages
561
Location
Europe
Zinc and nicotinic receptors.

Zinc potentiates neuronal nicotinic receptors by increasing burst duration​



https://pubmed.ncbi.nlm.nih.gov/18094103/

Lysine and nicotinic receptors

Lysine residues play a significant role in the function of nicotinic acetylcholine receptors (nAChRs), particularly in the ligand binding site and channel gating. These receptors are crucial for neurotransmission in the nervous system and are activated by the neurotransmitter acetylcholine (ACh). Lysine, specifically, has been identified as a residue that can influence the affinity of nicotine binding to certain nAChR subtypes
Thanks, very interesting. I will keep the acetylcholine receptors in my mind.
 

jason30

Senior Member
Messages
561
Location
Europe
Do you have access to a general neurologist or can you get a referral to one?

It sounds like you need an old-fashioned neurological evaluation to differentiate between a disorder of the spinal cord vs a disorder of the peripheral motor nerves that innervate your legs.

Best of luck to you! 🤞🏻
I am visiting the doctor tomorrow (again), and I will ask the doctor to send me to a neurologist. Disorder of the spinal cord is something which I also discussed a lot with the physio since my car accident in 2019.
Thanks.
 

hapl808

Senior Member
Messages
2,446
I saw several neurologists, but I just kept getting exams and shrugs as my condition worsened. Once it was bad enough that maybe they'd take it more seriously - I no longer had the energy or ability to attend appointments.

My muscles all 'freeze up' and get very brittle when I'm exposed to any allergens - dander, mold, etc. Literally cannot fully bend my knees. All my muscles after one prolonged allergen exposure have weakened and get strained very easily. During that period it felt like my muscles were tearing apart.

If after an exposure I can get to a clean area or even wear a high quality mask (not N95 but P100, etc), then slowly over a period of just hours my muscles will start to release a bit - but I never regained the strength and I have no way to rebuild the muscles. Any exercise whatsoever seems to worsen the condition, and I've tried everything including the lightest exercise bands or just bodyweight stuff with zero resistance.
 

bad1080

Senior Member
Messages
436
that is not pleasant, is it constantly present or are there better and good moments?
it correlates with my general state. there are times when i am doing better and it is gone and then times where it's almost constant when i am worse.
 

jason30

Senior Member
Messages
561
Location
Europe
I saw several neurologists, but I just kept getting exams and shrugs as my condition worsened. Once it was bad enough that maybe they'd take it more seriously - I no longer had the energy or ability to attend appointments.

My muscles all 'freeze up' and get very brittle when I'm exposed to any allergens - dander, mold, etc. Literally cannot fully bend my knees. All my muscles after one prolonged allergen exposure have weakened and get strained very easily. During that period it felt like my muscles were tearing apart.

If after an exposure I can get to a clean area or even wear a high quality mask (not N95 but P100, etc), then slowly over a period of just hours my muscles will start to release a bit - but I never regained the strength and I have no way to rebuild the muscles. Any exercise whatsoever seems to worsen the condition, and I've tried everything including the lightest exercise bands or just bodyweight stuff with zero resistance.
Sorry to hear, that's very intense.
I also react to mold and allergens plus some chemicals. After expose my body is in fire, the fight/flight mode is on and I have a lot of inflammation in the body.
I have bought a brain retraining program and soon start with it, I am curious if this change anything.
 

jason30

Senior Member
Messages
561
Location
Europe
it correlates with my general state. there are times when i am doing better and it is gone and then times where it's almost constant when i am worse.
It's so crazy that something so intense can be so strong one moment and then be gone the next.
 

linusbert

Senior Member
Messages
1,758
I saw several neurologists, but I just kept getting exams and shrugs as my condition worsened. Once it was bad enough that maybe they'd take it more seriously - I no longer had the energy or ability to attend appointments.

My muscles all 'freeze up' and get very brittle when I'm exposed to any allergens - dander, mold, etc. Literally cannot fully bend my knees. All my muscles after one prolonged allergen exposure have weakened and get strained very easily. During that period it felt like my muscles were tearing apart.

If after an exposure I can get to a clean area or even wear a high quality mask (not N95 but P100, etc), then slowly over a period of just hours my muscles will start to release a bit - but I never regained the strength and I have no way to rebuild the muscles. Any exercise whatsoever seems to worsen the condition, and I've tried everything including the lightest exercise bands or just bodyweight stuff with zero resistance.
i just had to run it through ai to get a idea of reasons, probably nothing new to you, but as others have also allergic triggers i paste it:
The symptoms described suggest a possible toxic myopathy or an environmentally triggered immune myopathy, potentially a rare form of environmental sensitivity myopathy or allergen-induced inflammatory myopathy. Here's a detailed breakdown:




1. Muscle Symptom Characteristics


  • "Freezing" and stiffness of muscles after exposure to allergens (dander, mold, etc.).
  • Severe muscle weakness and pain, which partially improves when removed from exposure or when wearing a high-grade mask (e.g. P100).
  • No ability to rebuild muscle – any form of physical activity, even minimal, worsens the condition.
  • Described sensation of muscles "tearing" suggests chronic muscular damage.

These are not consistent with typical allergic reactions alone, but rather point toward immune, toxic, or inflammatory muscular damage.




2. Possible Diagnoses (Differential)


a) Immune-Mediated Necrotizing Myopathy (IMNM)


  • A rare autoimmune muscle disease.
  • Muscle fibers are destroyed by immune attack (necrosis).
  • Can be triggered by environmental exposures or medications.
  • Diagnosed via blood tests (e.g., creatine kinase, specific antibodies) and muscle biopsy.

b) Multiple Chemical Sensitivity (MCS)


  • Characterized by systemic symptoms including muscle pain and fatigue triggered by low-level chemical or allergen exposure.
  • Pathophysiology remains unclear (possibly central nervous system or immune dysregulation).
  • Often controversial and not universally recognized in conventional medicine.

c) Eosinophilic Myopathy


  • Rare allergic-type muscle inflammation.
  • Triggered by allergens, parasites, or certain drugs.
  • Associated with immune cell infiltration into muscle tissue.
  • Requires biopsy and blood count (eosinophils).

d) Allergen-Induced Polymyorphic Muscle Reaction


  • Extremely rare.
  • Symptoms could resemble polymyositis or other inflammatory myopathies but directly triggered by allergens.
  • Not a well-defined disease category; likely overlaps with immune-mediated myopathies.



3. Diagnostic Workup Recommendations


  • Electromyography (EMG) to detect myopathic activity.
  • Serum CK, aldolase, liver enzymes – markers of muscle damage.
  • Autoantibody panels (e.g., anti-SRP, anti-HMGCR for IMNM).
  • Muscle biopsy for histological confirmation.
  • Allergy panels, IgE, histamine release testing for allergen response.
  • Environmental toxin testing (e.g., mold toxins, VOCs) from a specialist lab.



4. Important Observations


The fact that symptoms improve with a P100 mask or allergen avoidance suggests a strong external/environmental trigger. However, the persistent loss of strength and worsening with minimal effort points to an underlying chronic inflammatory or toxic process, not a typical allergy.




Conclusion​


This presentation does not fit well with standard neurological or allergic conditions. A rare form of environmentally triggered or immune-mediated myopathy is the most plausible explanation. Multidisciplinary evaluation (neurology, immunology, rheumatology, environmental medicine) is essential for further diagnosis and management.


Treatment depends on the underlying diagnosis, but based on the most likely categories (immune-mediated, toxic/environmental, or eosinophilic myopathy), here are targeted approaches:




1. Immune-Mediated Necrotizing Myopathy (IMNM)


a) Core Treatments


  • High-dose corticosteroids (e.g., prednisone): First-line to suppress muscle inflammation.
  • Steroid-sparing immunosuppressants: e.g., methotrexate, azathioprine, mycophenolate mofetil.
  • IVIG (intravenous immunoglobulin): Especially effective for anti-HMGCR or anti-SRP positive cases.
  • Rituximab: For refractory or antibody-mediated forms.

b) Supportive Care


  • Physical therapy under close supervision, only after inflammation is controlled.
  • Vitamin D and calcium supplementation if on steroids.
  • Avoid statins or other myotoxic drugs.



2. Toxic or Environmental Myopathy (e.g., Mold or VOC Exposure)


a) Elimination of Trigger


  • Strict environmental control:
    • HEPA air purifiers.
    • Avoidance of moldy or poorly ventilated spaces.
    • Use of P100 respirators in uncertain environments.
  • Relocation may be necessary if home/workspace is contaminated.

b) Detoxification Support (if mycotoxins or similar implicated)​


  • Binding agents (e.g., cholestyramine, activated charcoal): Sometimes used in mold-related illness.
  • Glutathione, NAC, or ALA (antioxidant support): Low evidence but used in environmental medicine.
  • Sweating protocols (e.g., sauna therapy): Anecdotal benefit in some cases, but needs medical supervision.

c) Medical Monitoring


  • Monitor muscle enzymes (CK), inflammatory markers.
  • Consider consultation with environmental medicine or functional medicine practitioners.



3. Eosinophilic or Allergic Myopathy


a) Corticosteroids: Mainstay for eosinophilic forms.​


  • Often leads to rapid improvement.
  • Long taper to prevent relapse.

b) Allergen Avoidance


  • Identify via skin or blood testing (RAST, IgE).
  • If a specific allergen is confirmed, strict avoidance is critical.

c) Anti-eosinophilic therapy


  • In rare, severe or steroid-refractory cases:
    • Mepolizumab or benralizumab (IL-5 inhibitors, off-label).



4. General Strategies for All Forms


  • Do not exercise until inflammation or damage is controlled. Overexertion worsens muscle destruction.
  • Nutritional support: High-protein, anti-inflammatory diet may help maintain muscle mass without triggering inflammation.
  • Psychological support: Long-term invisible illness often leads to isolation, anxiety, depression.



5. Specialist Involvement


  • Neurologist (with myopathy experience).
  • Rheumatologist (for autoimmune types).
  • Environmental medicine (for toxic triggers).
  • Immunologist or allergist (if allergic mechanism suspected).



Caution:​


Do not self-initiate immunosuppressive treatment. Diagnosis must be confirmed via appropriate labs and biopsy if necessary. Misdiagnosis can lead to worsening with the wrong therapy (e.g., steroids worsening undiagnosed infection or toxic injury).




Summary Table​


ConditionTreatment
IMNMSteroids, immunosuppressants, IVIG
Toxic myopathyAllergen/toxin avoidance, antioxidants, binders
Eosinophilic myopathyCorticosteroids, IL-5 blockers (rare)
GeneralAvoid exertion, specialist guidance, nutritional and psychological support
 
Last edited:

hapl808

Senior Member
Messages
2,446
Thanks for that list. IMNM is something I stumbled across recently, but the symptoms don't match as well.

I'm sure there's some element of MCS, but that's not well defined or accepted - and not very treatable.

Eosinophilic Myopathy sounds more plausible, but my CK levels weren't elevated when tested. Unfortunately one of my last blood tests crashed me for many months - and really just a permanent baseline drop, which made accessing more testing impossible.

One of my neuromuscular specialists offered to do a biopsy, but when I asked them what conditions they thought might be found, they literally could not name a single one. Other doctors I spoke to said an exploratory biopsy with zero idea what you're looking for is unlikely to be that helpful.

In addition, many doctors are so dismissive of any long term effects from testing. One doctor examined my knees forcefully, and I was never able to walk again. Of course, no doctor admitted that was even possible, but that was the end of my mobility for life. Therefore a biopsy seemed higher risk for me than for the average person.

I wish I could've gotten some of those tests done when my symptoms were less severe, but who knows - maybe it would've just hastened my decline.
 

linusbert

Senior Member
Messages
1,758
In addition, many doctors are so dismissive of any long term effects from testing. One doctor examined my knees forcefully, and I was never able to walk again. Of course, no doctor admitted that was even possible, but that was the end of my mobility for life. Therefore a biopsy seemed higher risk for me than for the average person.
woa this is some really bad... i do not want to speak any further because i have no positive words for this behaviour.
i had something similiar with my eyes a few month ago, the dr. blinded me and my retina didnt recover fully.. i still got some days where i have distorted viewing in the places of most blinding. its like the retinal cells got over stressed like my muscles, pushing their baseline down, make them work less optimal , taking them longer to react to stimuli.
and dr of course telling me it cannot be what is. he she damaged my eye.
this is one of the few things, despite trying to be faithful really makes me angry still. this absolute ignorance and arrogance and irresponsibility. its the personal hardest thing i have a hard time to forgive, because the massive amounts of ignorance and "just dont care how you suffer".
Drs cripple you, then tell you afterwards they did all correctly "due to protocol" not even a gesture of feeling sorry.

what did he do to your knee to cause this amount of trauma?
I wish I could've gotten some of those tests done when my symptoms were less severe, but who knows - maybe it would've just hastened my decline.
i noticed that i could not tolerate blood tests as good as i used to. i still do not understand the physiology how blood leaching can make you feel bad. maybe due to loss of blood volume, impairing cell functioning. i dont know.
what i noticed, i could do still blood testig with finger pricks without noticable bad effect. duoing a full panel is hard that way, but i can do small values. actually i am doing right tomorrow a vitamin A + E + Q10 test.
dripping blood on a paper card. one of my neurologysts did do this even for advanced myopathy diagnosis for some diseases, i think it was mr pompe.
so if you know what blood values, you might check if you can do those tests with paper and do it at home.
 
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