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Suspected AMM need help

jenmlove Message
26 Jun 2009, 02:10 PM

Questions first... How do I find a doctor that is willing to order the test, and what kind of doctor is most appropriate? Does the blood test have a specific name? I can only find a general description. Our story... We live in Utah. My husband has been fighting a progressive mystery illness for 4 years now. I just recently found AMN online and the symptoms match his almost exactly. Unfortunately, our doctors have not ever heard of it and won't order the blood test. In addition, he has been diagnosed with Conversion Disorder, so getting any help from doctors has proven very difficult. I don't believe he has Conversion, I think it's a cop-out from a doctor that didn't want to admit she didn't know. He has been diagnosed with Non-serum Arthritis & Central Sleep Apnea. Tested for MS. He had been using a cane for a couple of years. Now he is in a wheelchair. He had to go on disability because he has seizures and his work wouldn't allow him to come anymore. Please, if you can help with any information, I would be most appreciative. Feeling alone, Jennifer
anamatias Message
26 Jun 2009, 03:04 PM

Hi, Any neurologist, especially one who has some formation on genetics may help you. I don’t have the name of the analysis right know but it testes the levels of very-long chain fatty acids. In the US this isn’t such a rare disease as in other countries. You may also tell about the movie “Lorenzo's Oil” which may recall of the diseased. I live in Portugal but in the following topic you can find some information on US doctors or hospitals: Best wishes, Ana
jenmlove Message
26 Jun 2009, 07:43 PM

Thank you, Ana
amwz Message
27 Jun 2009, 04:40 AM

Jenmlove, My husband has adult onset X-ALD. His brother has AMN. I have been searching for info on the diseases and doctors to help us since April. Recently, I found Dr.Eichler at Mass General in Boston. He is incredibly knowledgeable about and experienced with ALD/AMN. He had my husband admitted to Mass General where a team of doctors evaluated him and advised treatment. The hospital is great; I wholeheartedly recommend checking it out. Mass General neurology: (617) 726-6093 Website: Also, Candice Root, at the Myelin Project, may be able to advise you about seeing someone closer to Utah. Her contact info is here: I hope this helps. Please let me know if I can help by giving you more info, etc. Best wishes, amwz
SallyBuckner Message
27 Jun 2009, 03:11 PM

Kennedy-Krieger Institute at Johns Hopkins in Baltimore is the leading researcher on AMN. Main phone no. is 443 923-9200. Ask for Dr. Naidu, Dr. Raymond, or Kim Hollingsworth. They can tell you how to get the blood tested. Good luck. SallyBuckner
bailey Message
28 Jun 2009, 11:46 PM

First you need to find a different neurologist. Call Kennedy-Krieger to see if they can recommend someone in your area. They would also be able to tell the doctor about the test. When I went to Johns Hopkins they had to do a lumbar puncture (spinal tap) to get the correct diagnosis. They will probably recommend an MRI as well. I have one once a year. Let me know if you have any other questions.
Timothy81 Message
4 Sep 2009, 04:37 AM

I've been going thru ALM for the past 7 years was diagnosed when i turned 21, the doctor ive been seeing has been telling me the same thing that they cant do anything for me. That the only thing is pain management that they can do for me... Ive been trying to find whatever help i can, but nothin yet... If there is anyone out there going thru what I am please get back at me, you can reach me at id really appreciate it.... Thank You...
russcandler Message
24 Nov 2010, 07:42 PM

*I can highly recommend Kim Hollingsworth. I was first dignosed with Addison's disease. Two yrs later, I was diagnosed with AMN. As far as I know, AMN _is_ adult-onset X-ALD. I have had 4 MRI's (I'm a Canadian - no cost to me.) My neurologist offers no good news for me. My geneticist has been most helpful, prescribing lovo- staten, which fights the long-chain-fatty acids and has helped me to walk much better.