Guest guest Posted May 25, 2005 Report Share Posted May 25, 2005 Warning! This is going to be very long! My name is Angie, I live in southern Indiana. I am 25 years old and diagnosed with many illnesses. I have Chiari Malformation, Syringomyelia, Deg Disc Disease, Scolosis, and Kyphosis. I suffer an aray of symptoms from daily headaches, severe leg pain and weakness, arm/hand weakness, numbness and tingling in my hands and feet. I dont have any reflexes in my legs at all, left side facial pain, memory loss, extreme fatigue, blurred vision, etc, etc. Let me first start my explaining what my illnesses are. Chiari Malformation is a malformation of the back of my skull that doesnt allow enough room for my brain so my brain literally falls into my spinal column. Syringomyelia is a lesion that is located in the center of my spinal cord causing nerve damage. My deg disc is putting pressure on my spinal cord, it is actually touching my spinal cord. Kyphosis is similiar to scolosis (curve of the back) but it is in the neck instead of the back. I underwent brain surgery in Aug '04 to correct the Chiari (CM) They removed 1 1/2 " of my skull, shaved my C1 vertebra and duraplasty (removed the outer layer of the brain and replaced with a piece of tissue) I recovered well from the surgery but it did not correct any of my symptoms. Chiari (CM) and Syringomyelia (SM) are rare so not many doctors are familiar with it. I have seen many doctors and none have helped me what so ever. I have a CM/SM specialist in Missouri (5 hours away) but he isnt able to help much. The doctors here in town cant pronounce it let alone treat it. I have been battling these symptoms and doctors for over a year now since I was first dx. I have had 12 MRI's since Mar '04. I am in severe pain daily and unable to work. My doctors refuse to put me on any meds b/c they want to " observe me " I have been told by many doctors that " cant help until you cant walk anymore " My diseases are similiar to someone with MS, but yet they refuse to treat me. My prognosis, I will eventually be paralized from the neck down, but no one knows when. I will just keep progressing. I have been told to keep taking OTC meds for now. Well I go through a large bottle of Tylenol weekly and this isnt including the Ibuprofin or Advil that I take daily as well. I know this isnt good for me at all and I know I am hurting myself. I am really into the holistic approach with my dogs, so why not myself too. I am not sure where to even start and that is what brings me here. I am a meat eater, I hate salads, fruits and veggies, so my diet sucks! I try and eat as much as I can but I know I dont eat enough. Are there any vitamins, supplements, etc that people have found usefull for people who have neuropathic pain? I hope I can say this on here but I have tried marijuana (sp) but it didnt help either. If I am not allowed to say that, I apologize. I am not a " druggie " just trying to get some relief from my pain. Sorry so long but I have been put through the ringer with doctors and want to feel better. I am only 25 years old and would like to live my life to the fullest until the wheelchair comes. I look forward to hearing from you and getting to know all of you. Thanks for listening. Angie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2005 Report Share Posted May 25, 2005 You could try homeopathic treatment, there are remedies for destructive diseases. Since the doctors aren't giving you anything, at least you might see some improvement. You would need to get a proper consultation, but there are some good remedies for destructive diseases, for example Lueticum. Calc carb may even be help fix some of the structural problems in the bone over a longer period of time. You can find a registered homeopath here: http://homeopathic.org/find.htm Here is the results for 'Indiana' Corrine Carpenter, MS CHom LLC 2401 N Walnut St Bloomington, IN 47404 (812)323-0095 Website: www.cchomeopathy.com Email: info Practitioner Lee A Harris, MD 3217 Lake Ave Fort Wayne, IN 46805 (219)424-6919 Email: homeopathdrc Practitioner Barbara A Hunter, LPN APH DIHom(Pract) 578 Geiger Dr Ste B Roanoke, IN 46783-9702 (260)672-2339 Website: www.bodynbalance.org Email: shunter710 Practitioner --- danerescue6 <tsthumper1 wrote: Warning! This is going to be very long! My name is Angie, I live in southern Indiana. I am 25 years old and diagnosed with many illnesses. I have Chiari Malformation, Syringomyelia, Deg Disc Disease, Scolosis, and Kyphosis. I suffer an aray of symptoms from daily headaches, severe leg pain and weakness, arm/hand weakness, numbness and tingling in my hands and feet. I dont have any reflexes in my legs at all, left side facial pain, memory loss, extreme fatigue, blurred vision, etc, etc. Let me first start my explaining what my illnesses are. Chiari Malformation is a malformation of the back of my skull that doesnt allow enough room for my brain so my brain literally falls into my spinal column. Syringomyelia is a lesion that is located in the center of my spinal cord causing nerve damage. My deg disc is putting pressure on my spinal cord, it is actually touching my spinal cord. Kyphosis is similiar to scolosis (curve of the back) but it is in the neck instead of the back. I underwent brain surgery in Aug '04 to correct the Chiari (CM) They removed 1 1/2 " of my skull, shaved my C1 vertebra and duraplasty (removed the outer layer of the brain and replaced with a piece of tissue) I recovered well from the surgery but it did not correct any of my symptoms. Chiari (CM) and Syringomyelia (SM) are rare so not many doctors are familiar with it. I have seen many doctors and none have helped me what so ever. I have a CM/SM specialist in Missouri (5 hours away) but he isnt able to help much. The doctors here in town cant pronounce it let alone treat it. I have been battling these symptoms and doctors for over a year now since I was first dx. I have had 12 MRI's since Mar '04. I am in severe pain daily and unable to work. My doctors refuse to put me on any meds b/c they want to " observe me " I have been told by many doctors that " cant help until you cant walk anymore " My diseases are similiar to someone with MS, but yet they refuse to treat me. My prognosis, I will eventually be paralized from the neck down, but no one knows when. I will just keep progressing. I have been told to keep taking OTC meds for now. Well I go through a large bottle of Tylenol weekly and this isnt including the Ibuprofin or Advil that I take daily as well. I know this isnt good for me at all and I know I am hurting myself. I am really into the holistic approach with my dogs, so why not myself too. I am not sure where to even start and that is what brings me here. I am a meat eater, I hate salads, fruits and veggies, so my diet sucks! I try and eat as much as I can but I know I dont eat enough. Are there any vitamins, supplements, etc that people have found usefull for people who have neuropathic pain? I hope I can say this on here but I have tried marijuana (sp) but it didnt help either. If I am not allowed to say that, I apologize. I am not a " druggie " just trying to get some relief from my pain. Sorry so long but I have been put through the ringer with doctors and want to feel better. I am only 25 years old and would like to live my life to the fullest until the wheelchair comes. I look forward to hearing from you and getting to know all of you. Thanks for listening. Angie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2005 Report Share Posted May 25, 2005 Hello Angie, My name is Frank and I would like to welcome you to our group. I do not have specific suggested alternative treatments for you, but sickness or damage in the human body is a complex problem that is handled by the body's repair systems. Your own body is many many times more knowledgeable than all of this group put together. Us learning how to " unlearn " things that do not work, us learning how to get out of the way of our own healing, to quit poisioning ourselves, learning what our bodies need to heal and then giving it to ourselves which includes learning to " listen " to our bodies tell us what it needs is usually what is required. The body of collected knowledge does not really understand completely how many, many diseases or conditions work or what exactly causes the body to heal. Oh, doctors almost always give medicine or want to operate, or something and if the patient survives the treatment and then survives the disease they take all of the credit for saving your life, but in reality almost all real healing is done by the body using it's wonderful defenses and repair facilities. That is the way of all nature and that is why it works. So how does one go about letting nature and the body do it's thing? We should give the body all of what it needs to heal itself. Since we aren't exactly sure what that is, we try and give it most all of the possibly needed building blocks and repair substances in great quantities. We learn little by little what our own specific/unique body system is lacking and needs and we try and supply that on a lavish, continuing basis. We try to give it support herbs to help it along. The amounts needed for the body to do it's job are sometimes very large amounts. Most authorities say that the amount of nutrients needed are in direct proportion to the amount of sickness or damage sustained. The sicker the person is or of how long of duration the illness has been present or how long damage has been occuring on a continueing scale is in direct proportion to how much will be necessary to permit the body to heal. Healing and repair does not happen overnight. We must first stop doing further damege so the body can catch up. I have read information that for those using nutritional therapy that 90% usually do not take enough to do the job. Most of us have had a lifetime of conditioning/brain washing to only think of disease and treatment in allopathic terms. Here is a label/name for the " disease " which usually really just describes symptoms, here is a very specific treament pill/shot/surgery to " treat " but usually not cure (to treat and suppress the symptom only and not identify or try and correct the cause) although they try and gloss over that until pinned down later by the patient wanting to know why they are still " sick " . Then they are told that there is no cure just treatment that will hopefully arrest or stop the progress of the " disease " process. Usually with a lecture that " science " does not have a cure yet but hopefully " someday " they will. Then the patient usually winds up getting additional treatments for some new mysterious " diseases " that science can't identify nor fix either that is usually part and parcel and comes along with all of that treatment. But all of those high powered minds never see any connections involved. We wind up with a million diseases/labels and millions of specific treatments to suppress symptoms. As the treatments cause further symptoms/damage/disease which require more " treatments " , we eventually wind up with ever escalating stacked/layered symtoms/treaments on some kind of increasing chemical merry go round until the whole thing flies apart, until we get the " we tried everthing we could to save him " speach. We must not only learn about our bodies and how to fix them, we have to also " unlearn " (which is very hard to do), many years of propaganda/misinformation and not get too hung up on labels/names to see and understand clearly. All of nature from the germ level to man and all in between heals with built in natural healing sytems. The animals in the forests do not play word games describing symptoms, taking different poisons/treatments to suppress symptoms, and work 20 to 30% of their time to pay for that " treatment " . They instead take in nutrients, herbal plants, sleep, rest, nurturing and let the body repair itself. It doesn't mean that we can't " help " the body do it's job though. We can give it in copious amounts those things that it needs to do it. The body has built in detection, correction and healing systems built in many millions of times more sensitive than all of the new whiz bang gimmcracks in a modern hospital. You are not alone here, most of the people here are suffering with some form of one " disease " or another. We are all in the same boat. We are learning to be our own doctors and to heal ourslves. We are doing this not out of arrogance, but out of necessity. For most of us we usually have realized that we really don't have that many other real choices out there which will really " cure " us, so with no other choices for a real cure, we will have to do the job ourselves. Some here have cancer, some MS, or hundreds of other lables. You are in good company. There are many here who have been " cured " . Many here have went through terrible times and allopathic treatment to get here but, have persevered and healed. Stay, learn, and heal with us. regards, Frank , " danerescue6 " <tsthumper1@j...> wrote: > Warning! This is going to be very long! My name is Angie, I live in > southern Indiana. I am 25 years old and diagnosed with many > illnesses. I have Chiari Malformation, Syringomyelia, Deg Disc > Disease, Scolosis, and Kyphosis. I suffer an aray of symptoms from > daily headaches, severe leg pain and weakness, arm/hand weakness, > numbness and tingling in my hands and feet. I dont have any reflexes > in my legs at all, left side facial pain, memory loss, extreme > fatigue, blurred vision, etc, etc. Let me first start my explaining > what my illnesses are. Chiari Malformation is a malformation of the > back of my skull that doesnt allow enough room for my brain so my > brain literally falls into my spinal column. Syringomyelia is a > lesion that is located in the center of my spinal cord causing nerve > damage. My deg disc is putting pressure on my spinal cord, it is > actually touching my spinal cord. Kyphosis is similiar to scolosis > (curve of the back) but it is in the neck instead of the back. I > underwent brain surgery in Aug '04 to correct the Chiari (CM) They > removed 1 1/2 " of my skull, shaved my C1 vertebra and duraplasty > (removed the outer layer of the brain and replaced with a piece of > tissue) I recovered well from the surgery but it did not correct any > of my symptoms. Chiari (CM) and Syringomyelia (SM) are rare so not > many doctors are familiar with it. I have seen many doctors and none > have helped me what so ever. I have a CM/SM specialist in Missouri (5 > hours away) but he isnt able to help much. The doctors here in town > cant pronounce it let alone treat it. > > I have been battling these symptoms and doctors for over a year now > since I was first dx. I have had 12 MRI's since Mar '04. I am in > severe pain daily and unable to work. My doctors refuse to put me on > any meds b/c they want to " observe me " I have been told by many > doctors that " cant help until you cant walk anymore " My diseases are > similiar to someone with MS, but yet they refuse to treat me. My > prognosis, I will eventually be paralized from the neck down, but no > one knows when. I will just keep progressing. I have been told to > keep taking OTC meds for now. Well I go through a large bottle of > Tylenol weekly and this isnt including the Ibuprofin or Advil that I > take daily as well. I know this isnt good for me at all and I know I > am hurting myself. > > I am really into the holistic approach with my dogs, so why not > myself too. I am not sure where to even start and that is what brings > me here. I am a meat eater, I hate salads, fruits and veggies, so my > diet sucks! I try and eat as much as I can but I know I dont eat > enough. Are there any vitamins, supplements, etc that people have > found usefull for people who have neuropathic pain? I hope I can say > this on here but I have tried marijuana (sp) but it didnt help > either. If I am not allowed to say that, I apologize. I am not > a " druggie " just trying to get some relief from my pain. > > Sorry so long but I have been put through the ringer with doctors and > want to feel better. I am only 25 years old and would like to live my > life to the fullest until the wheelchair comes. I look forward to > hearing from you and getting to know all of you. > > Thanks for listening. > Angie Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.