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Thread: Critical Care Polyneuropathy/Myopathy

  1. #1

    Critical Care Polyneuropathy/Myopathy

    Hi,

    I'm a 24 year old guy from England. In March 2005 while at university I contracted meningitis and septicaemia. I was on a ventilator for 3 weeks and had multi-organ failure, consequently I developed a condition called Critical care polyneurpathy/myopathy due to damage to my peripheral nerves.

    I have weakness in all of my limbs, with the weakness gradually coming more severe further down the limb. So, I have nearly full strength hips, weak quads and extremely weak feet, it's the same principle for my arms and hands. I have full sensation, good trunk strength and to my knowledge my spinal cord has been unaffected (although meningitis involves inflammation of the spinal cord).

    I'm posting here because as an active wheelchair user, it seems like a great resource and I have similar function to an incomplete quad (so I've been told). Also information on this condition is scarce in the UK and I haven't ever had contact with anyone who has the same problem.

    Although I've accepted my situation and cope well as wheelchair user I'm still open to any treatment that may improve my condition. So, if Wise Young, the nurses or other users know of any treatment available in the US for damaged peripheral nerves I would appreciate any suggestions.

    Thanks.

  2. #2
    Quote Originally Posted by Alick View Post
    Hi,

    I'm a 24 year old guy from England. In March 2005 while at university I contracted meningitis and septicaemia. I was on a ventilator for 3 weeks and had multi-organ failure, consequently I developed a condition called Critical care polyneurpathy/myopathy due to damage to my peripheral nerves.

    I have weakness in all of my limbs, with the weakness gradually coming more severe further down the limb. So, I have nearly full strength hips, weak quads and extremely weak feet, it's the same principle for my arms and hands. I have full sensation, good trunk strength and to my knowledge my spinal cord has been unaffected (although meningitis involves inflammation of the spinal cord).

    I'm posting here because as an active wheelchair user, it seems like a great resource and I have similar function to an incomplete quad (so I've been told). Also information on this condition is scarce in the UK and I haven't ever had contact with anyone who has the same problem.

    Although I've accepted my situation and cope well as wheelchair user I'm still open to any treatment that may improve my condition. So, if Wise Young, the nurses or other users know of any treatment available in the US for damaged peripheral nerves I would appreciate any suggestions.

    Thanks.
    Alick,

    What treatments have you tried? There are many possible mechanisms responsible for critical care polyneuropathy. Some commonly cited causes include prolonged pro-inflammatory cytokines, auto-immune attacks, and bacterial toxins.

    Wise.

  3. #3
    Hi,

    Thanks for your response. The term 'critical care polyneuropathy' was first mentioned to me almost a year after my initial illness. I haven't had any treatment to try and repair the damaged nerves. I've seen neurologists in the past here in the UK but no treatments have ever been suggested.

    I was in hospital for around 18 months and once I was medically stable (I also required skin grafts on my lower legs and lost some toes and 2 fingertips), they sent me to a rehab unit. The idea of treating the condition was never broached, I was told to 'wait and see' how much the nerves would recover by themselves. Over four years on, I think I've long since plateaued and can't really build any more strength than I already have.

    As for the cause, I was told it was a combination of septicaemia, multi-organ failure and the period of immobility while on ICU that led to my condition.

    Thanks.

  4. #4
    Quote Originally Posted by Alick View Post
    Hi,

    Thanks for your response. The term 'critical care polyneuropathy' was first mentioned to me almost a year after my initial illness. I haven't had any treatment to try and repair the damaged nerves. I've seen neurologists in the past here in the UK but no treatments have ever been suggested.

    I was in hospital for around 18 months and once I was medically stable (I also required skin grafts on my lower legs and lost some toes and 2 fingertips), they sent me to a rehab unit. The idea of treating the condition was never broached, I was told to 'wait and see' how much the nerves would recover by themselves. Over four years on, I think I've long since plateaued and can't really build any more strength than I already have.

    As for the cause, I was told it was a combination of septicaemia, multi-organ failure and the period of immobility while on ICU that led to my condition.

    Thanks.
    Did you get glucocorticoids (decadron, methylprednisolone, etc.)? What kind of rehabilitation have you had. Have you had electrophysiological tests to ascertain whether your polyneuropathy is due to demyelination or axonal loss? What is the basis of the diagnosis of peripheral polyneuropathy? At the time when it was happening, did they look for anti-phospholipid antibodies and other autoimmune markers?

    Wise.

  5. #5
    I am in possession of a copy of my medical notes; however they come in a few volumes, so I will look for any reference to the medication you mentioned. Could you please tell me when they would have given me glucocorticoids and at what point of my illness they would look for anti-phospholipod antibodies and other autoimmune markers, so I can narrow down my search a little?

    My rehabilitation was somewhat limited at first because of the condition of my legs, hands and feet. However, once they improved I worked mainly on standing with assistance (usually an battery-powered stand aid), hydrotherapy, resistance exercises and stretching. Once I was discharged from hospital, I regularly lifted light weights with my upper body and legs, used a 'thera trainer' exercise bike, swam and took up wheelchair rugby. My strength improved gradually but is now relatively static despite my best efforts.

    I have had electrophysiological tests, the last test I had (around 2 months ago) showed minimal improvements. I believe that the polyneuropathy is due to axonal loss.

    To my knowledge the basis of the diagnosis was the EMG test and the opinion of the neurologists.

    Many Thanks
    Alick

  6. #6
    Quote Originally Posted by Alick View Post
    I am in possession of a copy of my medical notes; however they come in a few volumes, so I will look for any reference to the medication you mentioned. Could you please tell me when they would have given me glucocorticoids and at what point of my illness they would look for anti-phospholipod antibodies and other autoimmune markers, so I can narrow down my search a little?

    My rehabilitation was somewhat limited at first because of the condition of my legs, hands and feet. However, once they improved I worked mainly on standing with assistance (usually an battery-powered stand aid), hydrotherapy, resistance exercises and stretching. Once I was discharged from hospital, I regularly lifted light weights with my upper body and legs, used a 'thera trainer' exercise bike, swam and took up wheelchair rugby. My strength improved gradually but is now relatively static despite my best efforts.

    I have had electrophysiological tests, the last test I had (around 2 months ago) showed minimal improvements. I believe that the polyneuropathy is due to axonal loss.

    To my knowledge the basis of the diagnosis was the EMG test and the opinion of the neurologists.

    Many Thanks
    Alick
    Alick,

    I was trying to ascertain what investigation or therapy had been carried out to validate the diagnose of critical illness polyneuropathy. Critical illness neuropathy is believed to be due to intense inflammation resulting from the critical illness leading to peripheral nerve demyelination. The condition is often associated with sepsis, septic inflammatory response syndrome (SIRS), multi-organ failure, and respiratory failure. It is manifested by decreased compound action potential amplitudes in peripheral nerves, affecting both motor and sensory evoked potentials.

    The differential diagnosis for critical illness neuropathy would be, in order of likelihood:
    • Spinal cord damage. This could be mediated by ischemia, for example.
    • Guillain-Barre, an infection-mediated peripheral neuropathy.
    • Motoneuronal disease, i.e. amytrophic lateral sclerosis.
    • Porphyria, a toxic condition resulting from accumulation of porphyrins.
    • Pre-existing neuropathy aggravated by critical illness
    • Myasthenia.

    Although the condition occurs to some degree in as many as 70% of septic patients, it is often not severe. Only 50% recover completely. The neuropathy is usually distal. No medication and only conservative therapy is usually recommended. Both motoneuronal disease and critical illness myopathies can be ruled out by showing normal or near-normal sensory responses.

    The reason why I ask about glucocorticoids is because prolonged use of steroids may result in a form of myopathy. In any case, it doesn't seem that you have taken methylprednisolone either acutely or chronically. I was wondering if they investigated you for the possibility of Guillain-Barre and you did not say what the cause of the critical illness was. I am not sure that there is any therapy at the present that restores function in peripheral neuropathy that is not due to myelin.

    Wise.

  7. #7
    Thanks for your help with this, Guillain-Barre has never been mentioned to me and I don't think they have considered investigating me for it.

    Also, I'm not exactly sure what caused the meningoccocal septicaemia. I don't think it is possible to ascertain the cause, I know it's relatively rare but can be quite common in universities and schools.

    I will look through the notes to confirm whether or not the neuropathy is due to myelin but to my knowledge it is an axonal problem.

    Again, thanks for taking the time to respond.

    Alick

  8. #8
    This is the post that came up when I was googling for my condition. I know it's a couple years old but I see the OP is still active here.

    I'm 32 years old. Two years ago I went into the hospital with pancreatitis. Many months later I finally awoke unable to move or talk with many tubes all over and severe pain.

    Eventually the tubes came out and most of my upper-body movements returned, although I was very weak.

    I spent nearly a year in the hospital, 8 months of it in ICU, most of them time trached. The hospital kicked me out eventually and I was forced to go to a rehab center- non acute. It was basically a waste of time and money... I left and came home, my parents and sister moved into my house to help take care of me. My livingroom now holds my hospital bed- it was too big to fit down any hallway or into any real bedroom.

    For over a year now I have been mostly bed-bound. I finally got a power-chair just a couple months ago and have recently started exploring my neighborhood. My left hand fingers are contracted so I can't use a standard wheelchair.

    Many many diagnosises were thrown around in the hospital, but this week I saw a neurologist for the first time outside of my initial hospitalization. He says it's critical illness neuropathy. While I was sick I got many infections, had organ failure, and the like.

    My doctors have told me that in time (maybe years) the envelope that surrounds the nerves do grow back at 2 to 3 mm a month and I should eventually walk again- but unfortunately what I find on google says that is very unlikely.

    On top of it I am/was a big guy... over 6 foot 4 and about 300 lbs. I can't transfer or really do anything much by myself.

    Just joined to see more about my condition and how others are doing.
    -Joe.

  9. #9
    I was diagnosed with Guillain–Barré syndrome and was paralyzed from the neck down. I too was told that my Myelin Sheath would re grow and it has. I now have most functions, but I am unable to run, as the signal cannot seem to get to my legs fast enough. If anyone contracts GBS and needs some support, please feel free to contact me. AL.

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