Thanks for the reply Donna
So here is what I am looking at from what I am currently understanding Neuropathy is broken down into 3 sections. Sensory, Motor, and Autonomic....
Sensory pretaning to our ability to feel eg the differance between hot and cold, where our feet are, if we have shoes or sock on or not, any trama to the area.
Motor pretaning to the muscles mostly the weaking of the muscles
And Autonomic pretanting to lost of control of internal organs, bladder, bowel, and even sometimes heart lungs and other organs.
I belive that inorder for us to be the least bit sucessful in fighting this illness we should try our best to at least know which of the catagorie(s) we fit into. That way we know what to watch for what is normal and what is not. For example if your dealing with Motor neuropathy you could try doing some physical theripy to help keep the strength in the muscles most important to you eg legs, hands, arms. If your dealing with Sensory neuropathy you would probly want to keep a water thermomitor by the tub and skinks to help prevent yourself from getting burned, maybe consider a walking stick or cane to help know where your feet are and whats on the ground below you. And I dont know a lot about autonomic but I am sure that there are doctors that could help slow the process maybe keggels (not sure if guys can do that?) they would also probly want to keep close eye on your blood presure and other major organ functions that way they can catch any problems b4 they became life threating.
I have not been told exactly much of anything. I do know for certian that my biopsi says I have the Sensory neuropathy, I have noticed a very minimal amount of muscle weekness but that could be from the decline in activity so I dont know about the Motor neuropathy. And I am hoping beyond hope that I do not ever have to deal with the Autonomic part of things but seeings how I do have High blood presure and have had for a long time and also have some kidney issues that seem to come and go I am thinking it is a possiblity for me. Hopefuly on the 15th when I see my new PCM I will be able to get the ball rolling to know more answers!
Some more info for you all Last night in all my searching I came across a web site that is trying to determin if the vacine Gardisile givin to teen girls to protect agains HPV is the cause of a 14 yr old girls neuropathy that ultimitly killed her in less than 2 year. So please everyone make sure you are doing your homework. Be sure to check into any medication, iv, inunization ect that any doctor or other person wants to put into your body. The best thing any of us can do is to educate ourselves. Just because the doctor says this is what I want you do to do does not by any means mean you have to do it. It is your body, your life and your health if it does not seem right to you or you just need more information tell the docotor that. Tell them that you can not allow this or that because you belive that its not right for you or tell them that you are hearing what they are saying but b4 you allow them to proceede you need to do some research and get some more information to be sure its the right thing for you. Always remember that doctors are people just like you and me. They are just educated in there own way if a doc came to a mechanic and the mechanic said you need to have your ac flused and refilled but you never use the ac would you let them do it? Probly not I think sometimes people forget that doctors are only people they do not know everything and they can be wrong. There are always other treatments or options if one isnt right for you ask if theres other possiblities!
Ok I am going to shut up now Talk to you all later.
Shawna
From: Donna <itzmedonna@yahoo.com>
To: Peripheral_Neuropathy@yahoogroups.com
Sent: Sat, February 27, 2010 7:33:41 PM
Subject: Re: [Peripheral_Neuropathy] What kind
Shawna, I get the jerking of the body too!
I've been having these for about 9 months now. I'm sorry that you are having these also, they get worse, at least my did. I sit here at my computer and my foot will jerk up making my knee it the table from under neath. What has me scare is when I get jerks inside my body (intestines and stomach). I am afraid it will happen to my heart. I have been holding a cigarette and dropped it because my fingers and hands jerk too. When ever I lay down my body jerks without fail.
I was told I have Peripheral Neuropathy in 2005, it's in my feet. The pain is burning (like someone is holding a torch to them), shocks like knifes are being shoved trough them and burning tingling sensation. I have to sleep each night with my feet out of the blankets and the air conditioning going aimed at my feet or else I can't sleep. I can't wear socks and I have 1 pair of tennis shoes (slip ons) that I can wear without pain. I can't tell you how many times I have returned shoes and slippers back. I am on a really good cocktail of medicines for as long as it lasts, knock on wood, but my feet are still very tender but at least they are not on fire any longer.
That's enough about me, try to have a good day.
Donna
From: Shawna Hall <shawnahall78@ yahoo.com>
To: Peripheral_Neuropat hy@yahoogroups. com
Sent: Sat, February 27, 2010 1:31:25 PM
Subject: [Peripheral_ Neuropathy] What kind
I've been having these for about 9 months now. I'm sorry that you are having these also, they get worse, at least my did. I sit here at my computer and my foot will jerk up making my knee it the table from under neath. What has me scare is when I get jerks inside my body (intestines and stomach). I am afraid it will happen to my heart. I have been holding a cigarette and dropped it because my fingers and hands jerk too. When ever I lay down my body jerks without fail.
I was told I have Peripheral Neuropathy in 2005, it's in my feet. The pain is burning (like someone is holding a torch to them), shocks like knifes are being shoved trough them and burning tingling sensation. I have to sleep each night with my feet out of the blankets and the air conditioning going aimed at my feet or else I can't sleep. I can't wear socks and I have 1 pair of tennis shoes (slip ons) that I can wear without pain. I can't tell you how many times I have returned shoes and slippers back. I am on a really good cocktail of medicines for as long as it lasts, knock on wood, but my feet are still very tender but at least they are not on fire any longer.
That's enough about me, try to have a good day.
Donna
From: Shawna Hall <shawnahall78@ yahoo.com>
To: Peripheral_Neuropat hy@yahoogroups. com
Sent: Sat, February 27, 2010 1:31:25 PM
Subject: [Peripheral_ Neuropathy] What kind
Hi everyone,
I was wondering if anyone here has been lucky enought to find out exactly which type of neuropathy you have? And Idiopathic doesnt count! So do you have motor neuropathy, sensory neuropathy, both or something all together? And if you do know exactly which you have could you please give us a description of your symptoms and experiences with your neuropathy? Lately I have noticed some new symptoms now that I am not so incredibly consumed by pain that I couldnt even think about anything else. I still have the pain and quite a bit of it and constanly I just no longer feel like someone is crushing my bones and putting my feet threw a meat grinder. But new symptoms I am noticing are full body jerk kind of like when your drifting off to sleep and all the sudden feel like your falling and you jump but a little different. And today while laying down relaxing I noticed my foot felt odd kind of tingly and all the sudden it jumped and the tingel was gone? My hands shake sometimes when I am holding things. These kinds of experiences to me are more scary than the actual pain because this is to me what seems like the start of loss of control of my own body. Any input would be great.
Shawna
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