Loss of strength in the legs after a virus

[hapl808]

what did he do to your knee to cause this amount of trauma?

Literally just dug his thumb in trying to feel for tendon damage. Then sent me for an MRI anyways, so it wasn't even necessary. There's no visible tendon damage, but I was never able to walk again - my knee and the surrounding muscles seized up within 24 hours of the exam.

Since it's 'unusual', doctors refuse to believe it. They'll explain why it's not possible, even when it already happened. This is like me explaining why a 787 couldn't crash on takeoff right after an Air India 787 crashed on takeoff. It's infuriating. Of course it's 'unusual' - that's why we see doctors. If our bodies were responding normally, we would have no need of them.

i still do not understand the physiology how blood leaching can make you feel bad.

I don't think it's actually related to the blood volume, because blood tests are usually a very minimal amount. It doesn't seem to make sense that 10ml would affect me. So my guess is that it is some immune or autonomic component. Basically that the immune system reacts as if it has encountered a major threat, even though nothing is actually happening. Maybe corticosteroids or some immune suppressant would help, but that has significant risks - especially if it doesn't help and makes it worse. I'd experiment more if my health weren't already so bad and fragile.

 

[hapl808]

It doesn't seem to make sense that 10ml would affect me.

Although I guess no aspect of these diseases 'make sense', so who knows.

 

[linusbert]

Literally just dug his thumb in trying to feel for tendon damage. Then sent me for an MRI anyways, so it wasn't even necessary. There's no visible tendon damage, but I was never able to walk again - my knee and the surrounding muscles seized up within 24 hours of the exam.

this is really extreme response. this kind of intense reaction i feel has "traditional" kind of myopathy or neurological disease at its base. if your muscles contract like crazy to stimuli , of course they waste lots of power and atp and are in a chronic over exercised state. like non stop exercise.
did you have any genetic testing? maybe even 23andme or nebula genomics?

I don't think it's actually related to the blood volume, because blood tests are usually a very minimal amount. It doesn't seem to make sense that 10ml would affect me. So my guess is that it is some immune or autonomic component. Basically that the immune system reacts as if it has encountered a major threat, even though nothing is actually happening. Maybe corticosteroids or some immune suppressant would help, but that has significant risks - especially if it doesn't help and makes it worse. I'd experiment more if my health weren't already so bad and fragile.

i also tend to both explanations somehow. because if blood flow is already at low limit even a slight change might be enough.
but 10 ml really isnt much... so probably the body reacting to the invasive damage .. maybe over reacting.
for open operations its also that the body in normal persons triggers massive effects. i mean makes sense. if the lion did bite you, you dont want to bleed to death, so the body constricts and tries to coagulate. and probably send the whole immune system over.
maybe thats the issue, activating the immune system in response to trauma.
but constricting blood vessels drains body of ressources so that could be a problem too.

 

[hapl808]

did you have any genetic testing? maybe even 23andme or nebula genomics?

I did 23 & Me, but also did a full genetic testing panel (supposedly $20k at the time) which came up with…nothing. Literally nothing found. These companies don't give you every random thing like 23 & Me, but are supposed to focus on the condition - yet they had nothing. GeneDx if I remember correctly.

This was around 2017. Supposedly you can get it 're-run' once since more and more genes are being discovered, but since I had a non-geneticist doctor order it (neuromuscular) that I no longer see, I've been unable to find another doctor to put in the order - and I can't do it myself though I've tried. I've asked a few doctors who seemed receptive, but none have followed through and I don't have the energy to pester them for months.

I'm just done - almost 30 years of this with no progress, just constant lies and bad advice from doctors and friends alike. Still can't even figure out my environmental triggers, let alone genetic ones. I spend every bit of my limited energy just trying to survive.

 

[linusbert]

I'm just done - almost 30 years of this with no progress, just constant lies and bad advice from doctors and friends alike. Still can't even figure out my environmental triggers, let alone genetic ones. I spend every bit of my limited energy just trying to survive.

you are for me 20 years ahead in this. the fact that you even still write here tells much about your spirit. despite having saying you are done you actually engage and encourage people in this forum. you are brave and strong. weirdest things have been healed, healing could come in a wonder tomorrow also to you.

This was around 2017. Supposedly you can get it 're-run' once since more and more genes are being discovered, but since I had a non-geneticist doctor order it (neuromuscular) that I no longer see, I've been unable to find another doctor to put in the order - and I can't do it myself though I've tried. I've asked a few doctors who seemed receptive, but none have followed through and I don't have the energy to pester them for months.

i hope there will be some AI coming doing the analysing of genes soon. right now i am also limited with having 500gb of genome data but no one evaluating it for me.

well, a few days ago in a newsletter i was made aware of https://www.mito.me/ . i might give that a shot. its rather new and i believe Chris Masterjohn does a personal analysis of the genetics, or at least he developed that test they have patented.

 

[kushami]

I am in the process of being diagnosed with a neuromuscular disorder (not confirmed yet, but that's the way it's heading) and I found a useful website.

I am afraid it is a lot of work to look through. I was "lucky" in that I have a distinctive and uncommon symptom, so there weren't too many possibilities for me to investigate.

Here is the main page:
https://neuromuscular.wustl.edu/index.html

And here is the page on myopathies (muscle diseases that come with weakness, stiffness, spasms):
https://neuromuscular.wustl.edu/maltbrain.html

This may not be the right page to look. And it may not be neuromuscular. Just thought it might be useful.

 

[kushami]

Periodic paralysis also came to mind. Confusingly, it doesn't necessarily involve paralysis (the condition was named before genetic and other testing identified less-severe cases). I am not sure whether it can affect the legs only. Just rereading about it, it seems that people feel normal between attacks, so it may not apply, but if your potassium levels were abnormal all the time, maybe it could be constant with fluctuations. Not sure.

Also, just a general tip: The descriptions of diseases and conditions that you get from secondary sources, even reputable ones, are not necessarily accurate. They might be simplified or even wrong.

Best to read a primary source, such as a journal article that summarises recent knowledge, an article by an expert in the field written for a support organisation, or forum posts from people with a confirmed diagnosis.

Edited to add after further reading: Most people with periodic paralysis feel normal between attacks, but some have symptoms that rumble on between attacks. So periodic paralysis doesn't have to be periodic or involve paralysis. Argh!

Also I did a brief search, and it seems it can mainly or exclusively affect the legs. It could be that the rest of the body is slightly affected, but this may not be very noticeable in comparison to the legs not working.

Some patients have attacks that come on suddenly, but others have a lead-up of several days of warning signs before an attack.

 

[kushami]

Here is one more article:
https://www.aafp.org/pubs/afp/issues/2020/0115/p95.html

... and a letter from another doctor adding things he thought were missed:
https://www.aafp.org/pubs/afp/issues/2020/0715/p73.html

 

[kushami]

@hapl808, if you have your original test data, you can run them through a database yourself to see whether there are any matches now. There are free and low cost options. I realise this might require energy you don't have.

 

[linusbert]

I am in the process of being diagnosed with a neuromuscular disorder (not confirmed yet, but that's the way it's heading) and I found a useful website.

I am afraid it is a lot of work to look through. I was "lucky" in that I have a distinctive and uncommon symptom, so there weren't too many possibilities for me to investigate.

Here is the main page:
https://neuromuscular.wustl.edu/index.html

And here is the page on myopathies (muscle diseases that come with weakness, stiffness, spasms):
https://neuromuscular.wustl.edu/maltbrain.html

This may not be the right page to look. And it may not be neuromuscular. Just thought it might be useful.

these are awesome, i actually think this information should be linked somewhere visible for everyone, maybe pinned or so.