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Hereditary neuropathy with liability to pressure palsies

Discussion in 'Peripheral Neuropathy' started by Boule de feu, Nov 15, 2010.

  1. Boule de feu

    Boule de feu Senior Member

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    What I find difficult with CFS is that we end up with very weird symptoms. This is one of them.

    Three weeks ago, I ended up sitting to long on the floor in my daughter's room. When I got up, my foot was numb - same sensation when you freeze your feet while skating. However, it never left. Now, I have three numb toes, the top of my foot feels weird (dentist feeling) and I can touch the nerve (calf) that triggers painful electric shocks in my toes.

    My doctor mentioned a tarsal tunnel syndrome which I believe I have. He asked me to wait a few months to see if it would go away.

    When someone mentioned HNPP, I realized that I had several incidents before:

    I would wake up in the middle of the night with one (or two) numb arms. The tingling was so severe that I had to lift my arm with the other arm to move it - Each time, I would have to get up and shake it really hard to make the tingling go away. Sometimes, it would work. It was extremely painful. The first time it happened I thought I was having a heart attack.

    At some point, the left hand side of my face was also numb. It stayed like that for at least a year. My doctor thought I had a tumor on the optic nerve.

    Now, I have pain in my wrists. I get cramps whenever I try to do something (like peeling potatoes).

    I have difficulty walking. I was diagnosed with peripheral neuropathy a while back.

    My dad is also dealing with paralysis in three of his fingers. We don't know why.

    Has anyone been dealing with this?



    ______________________________________________________________

    What is hereditary neuropathy with liability to pressure palsies?

    Hereditary neuropathy with liability to pressure palsies is a disorder that affects peripheral nerves. These nerves connect the brain and spinal cord to muscles as well as sensory cells that detect touch, pain, and temperature. In people with this disorder, the peripheral nerves are unusually sensitive to pressure.
    Hereditary neuropathy with liability to pressure palsies causes recurrent episodes of numbness, tingling, and/or loss of muscle function (palsy). An episode can last from several minutes to several months, but recovery is usually complete. Repeated incidents, however, can cause permanent muscle weakness or loss of sensation. This disorder is also associated with pain in the limbs, especially the hands.
    A pressure palsy episode results from problems in a single nerve, but any peripheral nerve can be affected. Episodes often recur, but not always at the same site. The most common problem sites involve nerves in wrists, elbows, and knees. Fingers, shoulders, hands, feet, and the scalp can also be affected. Many people with this disorder experience carpal tunnel syndrome when a nerve in the wrist (the median nerve) is involved. Carpal tunnel syndrome is characterized by numbness, tingling, and weakness in the hand and fingers. An episode in the hand may affect fine motor activities such as writing, opening jars, and fastening buttons. An episode in the leg can make walking, climbing stairs, or driving difficult or impossible.
    Symptoms usually begin during adolescence or early adulthood but may develop anytime from childhood to late adulthood. Symptoms vary in severity; many people never realize they have the disorder, while some people experience prolonged disability. Hereditary neuropathy with liability to pressure palsies does not affect life expectancy.

    What other names do people use for hereditary neuropathy with liability to pressure palsies?
    compression neuropathy
    entrapment neuropathy
    familial pressure sensitive neuropathy
    hereditary motor and sensory neuropathy
    hereditary pressure sensitive neuropathy
    HNPP
    inherited tendency to pressure palsies
    tomaculous neuropathy

    More on that:
    http://wiki.medpedia.com/Hereditary_neuropathy_with_liability_to_pressure_palsies
     
  2. Merry

    Merry Senior Member

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    Hi, Boule de feu.

    I've been wondering how you are doing. Not so good apparently.

    Through the years I've had from time to time numbness in both little fingers at the same time or both little toes. Seems like there was once when the little fingers and little toes were all numb at the same time. I supposed it was some weird brain thing.

    I have woken up with arm numbness. The arm on top of my body was numb, and I thought maybe it hadn't been gettng enough blood. When I shook it, feeling returned.

    Sounds like your problem is more extreme.

    I wish I could remember more details. I have been ill so long that I have trouble remembering what happened when and just what the symptoms were like. It wasn't until 1988 that I began to keep a medical journal, and when I go back to read it, I am always surprised at all the crap that happened that I've forgotten about.
     
  3. alex3619

    alex3619 Senior Member

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    Hi Boule de feu

    I have the same problem to a lesser extent, mainly in my feet and transiently in my hands. I think my problem is small fiber neuropathy, with burning feet syndrome as a side effect. Recently it was shown that large numbers of CFS patients have small fiber neuropathy, so it might be caused by XMRV and not hereditary (not that having XMRV would rule out also having an hereditary version). Do you get unusual sensations of heat or cold?

    The pressure problem was made worse in my case by drugs that induced tissue swelling. Beta blockers were the worst of these. I have still not found a cure, but soaking my feet in moderately hot water helps. Cool water is supposed to help, and it does relieve some of the sensations, but I have noticed more of an improvement with hot (not scalding) water.

    I too have had to shake my hand or leg to return some feeling to my extremities. I have noticed this problem more in long term patients. I was diagnosed in 89, sick continuously since 85, and probably had this (ME or CFS) since 68.

    Bye
    Alex
     
  4. Boule de feu

    Boule de feu Senior Member

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    Hi, Merry.

    Thank you for your reply. I have been avoiding the forum. I was too sick to be at the computer.
    I am feeling a bit better. It seems that November is a really difficult month for me. I'm sure that if I rest a lot, I will be back on my feet. I hope the weather is better at your end and that you are not as miserable as I am, right now.

    You never had any tests done for this?

    I had an EMG done four years ago. The lady told me that there was something unusual in my left leg, but I guess there wasn't enough evidence at the time to pursue the search.
     
  5. Boule de feu

    Boule de feu Senior Member

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    Hi, Alex.

    I do suffer from erythromelalgia. I believe it is very similar to the burning feet syndrome. However, soaking in warm or hot water makes my feet worse. I must avoid heat. Cold feels good though, and stops the burning sensation instantly.

    What do you mean by unusual sensations of heat or cold?

    My feet, hands and knees become very cold to the touch and then very warm. I'm often shivering/always cold when others around me are not. The numb toes really bother me because I don't feel the cold when I'm outside. I react strongly to hot weather and I can't stay in the heat at all. I have noticed that I don't feel heat anymore, especially when I need to take a dish out of the oven or microwave. It is easy to burn myself without realizing.

    Lately, I have been having a difficult time with typing.

    I'm glad to see that I'm not imagining all this.
     
  6. Merry

    Merry Senior Member

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    Hi, Boule de feu.

    No, I never had tests done to try to explain the numbness. It was a transitory problem, and I just accepted it as one of the many, many symptoms of ME/CFS. Besides that, I never had easy access to doctors with expertise in treating ME/CFS, and I lost major medical insurance some years back.

    Yes, please rest. I hope you get through November and then the upcoming winter holidays ok.

    Merry
     
  7. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    Hi Boule de feu, I usually have my feet feeling like they are on fire, to a lesser or greater extent. Small fiber neuropathy is linked to damage to temperature sensing nerves. We can feel temperature extremes much more than normal - either hot or cold or both. Usually we are more sensitive to heat, but it doesn't always work that way.

    In my case I am also very sensitive to hot weather, and semi-insensitive to cold weather. However, I can shiver with cold at 50C or burn up at 10C, so it is not entirely predictable.

    Bye
    Alex
     
  8. Boule de feu

    Boule de feu Senior Member

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    Oh, boy. It's not already the holidays?...
     
  9. Boule de feu

    Boule de feu Senior Member

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    When your feet are on fire, do you only get the sensation or you can feel the heat to the touch?
     
  10. leaves

    leaves Senior Member

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    I often have numbness of my arms and I have to shake a long time before I get it back to live. My legs sometimes too.
    I am xmrv+. Who knows what it is tho...
     
  11. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Are you taking heavy duty pain meds? The arm/shoulder thing reminds me of when I was on heavy duty pain killers and I would awake every hour with massive pain in my shoulder of the side I was sleeping on. I quit taking the pain killers, it was leading down a slippery slope and not really helping the issue.

    GG

    PS My left wrist has started bothering me recently, I am right handed.
     
  12. Boule de feu

    Boule de feu Senior Member

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    Just Neurontin, but very low dose.
    I have started Mobic - 1/2 of what is permitted/day
     
  13. Boule de feu

    Boule de feu Senior Member

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    I don't know if I am XMRV + or not.
    My legs got worse today.
     
  14. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    Hi, My feet are normal temp, but feel like a blowtorch is on them if the sensation is at max, which it is only rarely. Mostly its just like I am standing on hot concrete, even if its cold tiles. I can get similar sensations at times over most of my skin, including my back and shoulders. Bye, Alex
     
  15. Rooney

    Rooney

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    Hi all,

    My limbs have had an uncomfortable tingling ever since this illness started. I have just been perscribed Metanx because of hereditary problem with methylfolate which comes from one parent. We'll see how this goes. I don't know how it compares with Deplin, another possibility, I just went with what the Lapp clinic suggested. I got a fibro diagnosis too a the office visit. I've been taking neurontin for years and it helped some. Good luck with this. I was told by Dr. Black that I may even be able to go off B12 injections after 3-6 months.

    An Overview of Metanx
    Metanx is a prescription medical food for the dietary management of endothelial dysfunction in patients with diabetic peripheral neuropathy.

    How is Metanx different than over-the-counter vitamins?
    Traditional over-the-counter vitamins are synthetic forms of the nutrients found in nature. This is the case for common B-vitamins such as folic acid, vitamin B6 and vitamin B12. Each of these must be converted into their natural, active forms before they can actually be used by the body's cells for such vital functions as DNA production, cell reproduction and homocysteine metabolism.

    B Vitamin Active Form
    Folic acid L-methylfolate
    Vitamin B6 Pyridoxal 5'-phosphate
    Vitamin B12 Methylcobalamin
    Metanx is a prescription medical food and has a unique formulation providing the active forms of folate, vitamin B6 and vitamin B12 to manage the distinct nutritional requirements of diabetic neuropathy patients who often experience numbness, tingling, and burning sensations in their feet.

    Each Metanx tablet contains:
    L-methylfolate Calcium (as Metafolin) 3mg
    Pyridoxal 5'-phosphate 35mg
    Methylcobalamin
     
  16. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    I always wonder why most doctors don't help people with nerve problems. Lipoic Supreme is so good and easy. It is such a shame is is not used more. I take 600mg per day. Took all nerve problems from my feet.
     
  17. leaves

    leaves Senior Member

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    It is not always that easy unfortunately. I have taking supplements like lipoic acid, l-carnitine, q10, methylfolate, methylb12, p5p, choline, phospatidylserine etc etc and I still have these problems.
     
  18. 3CFIDS@ourhouse

    3CFIDS@ourhouse still me

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    I'm sorry this is happening to you! My husband has had several instances of pressure (one incident of standing with his arm against a fence for several minutes) palsy. He couldn't use his forearm at all at first, and it gradually improved, subsiding in a month to three months. This was before he got sick. When he had the nerve testing, the neurologist said he had the nerves of a 90 year old (he was less than 40) laughed and shrugged his shoulders. No explanation. He is also sensitive to slight touch on his arms and legs which feels painful. We believe exposure to a potent neurotoxin (a now-banned pesticide) may have caused all this and may have caused three members of our family to end up with CFS. Environmental exposures may very well be one of the triggers.
     
  19. Boule de feu

    Boule de feu Senior Member

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    I have to admit that I haven't looked into the meds for this condition. It started suddenly, just a few weeks ago. But, thank you for the info. I will start with Metanx and go from there.

    Good luck. I hope your condition improves too.
     
  20. Boule de feu

    Boule de feu Senior Member

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    My GP said that it was probably a tarsial tunnel syndrome, and added that I wouldn't be too impressed with the solutions that are available. As I said, he is probably right. However, I am starting to connect the dots. Too bad I didn't write all of the incidents I have experienced before. It would have been easier to dig a bit deeper.

    I will definitely look into that. Thank you for the info.
     

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