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New to AMN - Help - Any Treatments

suzlady Message
28 Mar 2012, 01:36 AM

I have been living with a multitude of symptoms for 25 years and just wanted to know why I was progressively degenerating. I have incomplete quadriparesis (spinal cord injury at C3 and C6), Adrenal Gland Insufficiency, Idiopathic progressive polyneuropathy, and Idiopathic progressive autonomic neuropathy. For the last 25 years although I have fancy names to conditions, I lived with unknown origins and they are debilitating. Maybe, God just wants me to stick around to help other people, well that is my belief. A few months ago, I asked my neurologist Dr. Louis H. Weimer from Columbia Presbyterian Hospital in New York, New York to submit my medical records to the National Institutes of Health (NIH) Undiagnosed Diseases Program (UDP), which accepts 50 to 100 people yearly to investigate. Prior to the beginning of this year, the Undiagnosed Diseases Program (UDP) received such great attention applications were not being accepted, but this January they opened the application process. A couple of months ago, I received acknowledgement that they received my application. Well, Saturday I received a letter stating that I should have a metabolic work up for peroxisomal disorder, which was part of the care plan suggested by Columbia and carrier status for Adrenomyeloneuropathy was mentioned. I hate to say this but I have been living 25 years with an unknown illness, I guess I should be used to being clueless about a care plan proposed. The patient is always the last to know what is going on. So since a care plan was suggested, I was denied evaluation from the Undiagnosed Diseases Program (UDP). The UDP suggested that I have the following disorders: peroxisomal disorder and Adrenomyeloneuropathy (AMN). This just leaves me with more questions than answers and treatments.
Lonelycat Message
28 Mar 2012, 04:53 AM

Wow, that was a lot. I've had it for a long time. Diagnosed when i was 4, now I'm 25, started showing symptoms about 1-2 years ago. I've been closely followed by doctors for a long time, and I'm a typical AMN guy. What does that mean? Adrenal deficiency, gait problems, hyper reflexive, obvious nervous system over/under action. Advice? See tons of doctors if you can. Modern medical science is great. Not saying holistic is bad, it's quite soothing. Like you said, God put us here to be happy and helpful. Cheers!
suzlady Message
28 Mar 2012, 09:18 AM

Thank you Lonelycat! I appreciate your helpful comments. Sometimes, when your body just does not want to move or you went unconscious because you were in addisonian crisis - you know that there are indivduals like you who can understand how you feel and can relate to what you are talking about! Cheers back at you! Suzanne or my nickname Suz
stevensims Message
1 Apr 2012, 12:55 PM

Hi, I think we can all benefit from using Magnesium Chloride flakes or Oil and Vitamin D3. Best wishes Steve
suzlady Message
2 Apr 2012, 05:00 PM

Hi Steve, Thank you for your suggestions! I just wanted to know what part of the body do the supplements help or does it help AMN in general? May I ask does Lorenzo's Oil Help and How do I get it? Best Wishes to you!! Suzanne
stevensims Message
2 Apr 2012, 07:57 PM

Hi, I don't know if Lorenzo's oil works? I take them to help with neuropathic pain and muscle spasms, only Magnesium Chloride gets absorbed and vitamin D3 needs magnesium to convert to it's active form in the bloodstream Thanks Steve
suzlady Message
2 Apr 2012, 08:44 PM

Hi Steve, I will definately look into these links, because I experience unbearable pain. Thank you very much! Unfortunately, I have very severe spasms that make my arms and legs extend as well as jump up and down vigorously. When I told my pain management physician about what my pain felt like here is how I described what I feel: My pain feels like I am being stabbed with knives repeatedly throughout my body and these knives have penetrated through to the other side. These knives have fastened me to a very large slab of dry ice and I am only dressed in my bathing suit while attached by the knives to the dry ice. Unfortunately, my pain has gotten to the point that even light touch or cool water especially triggers me into severe pain of a level 9 to 10, which is unbearable and I am also very spastic. Usually, I am able to live with a constant level 8 pain and try to make believe that it is not there or effecting my day. I take enough medicine to treat an elephant in nerve pain Neurontin, Lyrica, Zanaflex, Valium, Prozac, Savella, Methadone (not for addiction but nerve pain), Opana (Long Acting Morphine), Butrans Transdermal Patch (Long Acting Morphine Transdermal Patch), Voltaren Gel, and Celebrex. I am scheduled for surgery to implant a device that is called a spinal cord stimulator. My hope is to be able to reduce the amount of pain medicine I use, because I am so scared that one day I might accidentally fall asleep and remain sleeping if you know what I mean. I stop taking all narcotics 4 hours before bedtime and take a sleeping pill to get through the jerky movements of my arms and legs do throughout the night. I lose a lot of sleep but I am alive. Any New York Residents, Alexander Weingarten, MD is Board Certified in Anesthesiology and has been elected as a fellow of the American Academy of Pain Medicine Good Luck Everyone!! My prayers are with us for a cure to myelin destroying illnesses! I hope that I have been helpful to anyone in need! I think that is my purpose in life is to unconditionally love and provide help! Best Wishes, Suzanne or Suz
SallyBuckner Message
4 Apr 2012, 01:13 AM

Steve, I don't have pain myself, but my son (who died 3 years ago) had severe pain and another son has some. I checked the links you sent and was a bit confused; do you use the magnesium in shots or through massage?
Anthony90 Message
4 Apr 2012, 04:10 AM

Sally, amn does not contribute to death? Correct? Only ALD....?
Aish Message
4 Apr 2012, 09:13 AM

To Suz My husband is taking Lorenzo's Oil for 18 months now. It doesn't appear to have any effect on the symptoms unfortunately but we hope it will stop the AMN becoming ALD. MRIs clear so far. He also takes fish oil which helps a little with his joints. He doesn't have severe pain like you but does have a lot of spasms. Tried Baclofen but didn't like the effects, found he had less sensation which made driving more difficult. Also : See my posts on other threads for information on L.O. availability etc
stevensims Message
4 Apr 2012, 10:28 AM

Hi, Magnesium supplements are not well absorbed the best way is transdermally either spray oil and rub in or add flakes to a bath or foot soak the oil is a cheaper option, I buy flakes a kilo costs about £10, I then mix 150g with 150ml of water, I also add about half a tea spoon to some water and knock it back, it tastes awful but it is good for constipation which also puts pressure on the bladder, I've also read it helps with bladder spasms? (It must be Magnesium Chloride) All the best Steve
SallyBuckner Message
4 Apr 2012, 02:47 PM

Anthony, AMN contributed to my son's death. At 54. he had bad bedsores (had been wheelchair bound for about 18 years), heart trouble (probaby caused by taking so many painkillers), and at the last 1/2 of his diaphragm was paralyzed; I assume this was related to AMN though I don't know. He had to have a grach difficult to et, swallowed something the wrong way, got pneumonia. AMN made his life miserable for more than 2 decades.
stevensims Message
4 Apr 2012, 04:14 PM

Hi Anthony, AMN effects us all differently! I've got Addison's I get muscle spasms in my arms, and legs and I get bad pain, I've met lots of others and they just have mild symptoms, no pain at all! there are different mutations of the gene. My best advice would be to take the least amount of medication, eat a healthy diet, get outside in the sun (Vitamin D) and keep as active as possible. All the best Steve