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Looking for ALD/AMN doctors

amwz Message
17 May 2009, 02:47 AM

My thirty-five year old husband was recently diagnosed with adult onset ALD. He has white matter lesions on his brain and psychiatric symptomatology. The doctors in my area haven't had experience with this disease. I have been searching for doctors with ALD/AMN experience who are willing to see him. Any suggestions? Thank you!
brittcarrier Message
17 May 2009, 02:04 PM

Have you contacted Dr. Raymond or Kim Hollands worth from Kennedy Kreigher Institute in Baltimore, MD? Are you in the US? Kim Hollandsworth R.N., B.S.N. Kennedy Krieger Institute 443-923-2772
amwz Message
18 May 2009, 02:56 AM

Thank you, brittcarrier. I haven't tried Kennedy Krieger, but will call tomorrow. I am in upstate New York, and was hoping to find help in NYC or Boston, but will gladly go anywhere there may be treatment. Thanks for your suggestion!
brittcarrier Message
18 May 2009, 02:39 PM

There are doctors at Massachusetts General Hospital in Boston Florian Eichler, MD. Check out this site: Phone: 617-726-6093 Fax: 617-724-7860 Clinic Coordinator: Manashi Shanbhag Clinic Address Massachusetts General Hospital Yawkey Ambulatory Outpatient Building Floor 6, Room 6B 32 Fruit Street Boston, MA 02114 Mailing Address Florian Eichler, MD Department of Neurology Massachusetts General Hospital Mailcode: WACC, Suite 720 55 Fruit Street Boston, MA 02114
amlrober Message
16 Jun 2009, 09:00 PM

Hello amwz...My husband has also been diagnosed with AMN and is close in age to your husband (37yrs). I see your post was about a month ago and I'm wondering how your husband is doing and I'd also like to know what psychiatric symptoms your husband was having when he was diagnosed. My husband only has weakness in his legs and back pain but has also had many recent bouts of dizziness. He goes for an MRI in a couple of weeks, and we're nervous about brain lesions. It's so hard to read all the symptoms and know for sure. Thanks for your help.
brittcarrier Message
16 Jun 2009, 09:26 PM

Hello amlrober - Has your husband been tested for Addison's disease? It usually goes hand in hand with ALD/AMN.
SallyBuckner Message
17 Jun 2009, 01:23 PM

To amwz: Try Dr. Gilmore O'Neill at Mass. General East in Charlestown, MA. He was at the nat. conference several years ago, is very knowledgeable.
amlrober Message
18 Jun 2009, 04:18 PM

amwz: My husband was originally diagnosed with Addison's Disease when he was 12 years old. It was only recently that he found out he NEVER had Addison's Disease really, rather it was just a symptom of the AMN. He was diagnosed with AMN when he was 35. You mentioned that your husband had some psychiatric symptoms...I'm wondering what this looks like for him. Have you found a doctor that's been particularly helpful? We are living overseas but are coming back to the States this summer and would like to connect with one. He sees an endocrinologist for his Addison symptoms and a naturopath for his AMN weakness and pain. Remarkably, this naturopath has him on a diet that seems to have significantly reduced his leg weakness. Last year he was using a cane and this year he hasn't had to use it at all!
SallyBuckner Message
18 Jun 2009, 05:43 PM

To amlrober: I'd like to know more about the diet that has reduced your husband's leg weakness.
amwz Message
27 Jun 2009, 04:25 AM

To amlrober, Sorry not to get back to you sooner! If you are looking for a doctor in the states...Dr. Eichler in Boston is wonderful. He saw my husband, David, recently. His team of docs at Mass General was phenomenal. The hospital was great; everyone was incredibly knowledgeable and kind. Brittcarrier posted Dr. Eichler's info earlier in this thread. As far as symptoms, David never had physical symptoms. However his brother, Rick, has suffered with MS-like symptoms for 10+ years. Since David's diagnosis, Rick has been diagnosed with AMN. Rick doesn't have any brain involvement; his MRI looks great. About 3 or 4 years ago, when David was 33, he started acting different and being forgetful. He was detached and confused. I suspected drug use or mental illness for his gradual decline. When I finally convinced him to see a psychiatrist, he was misdiagnosed as bipolar. Finally, earlier this year, he was committed to a psych ward where he was diagnosed with schizophrenia. When the anti- psychotic drugs didn't work, they gave him an MRI and found severe brain damage. If there is anything else I can help you with, please let me know. I have done a lot of research and found lots of helpful folks. Candice Root, at the Myelin Project (, may be able to advise you. Best of luck, amwz
amlrober Message
23 Aug 2009, 07:36 PM

To all: sorry I didn't get back sooner...have had trouble with the site. Thank you amwz for sharing all that you did about your husband. You have been through a lot, as I'm sure many others on this site have as well. Thank you brittcarrier (and amwz) for your recommendation of Dr. Eichler in Boston. We will get in touch with him. SallyBuckner: We believe the diet is helping my husband's progress, however, he does take a lot of supplements from the naturalist as well. The diet is fairly miserable in that it's fat free and primarily vegan (our naturalist however has relaxed some on the vegan and now my husband eats a bit of low fat meat and dairy). The naturalist has also put him on adrenal supplements and others that he has been muscle tested for. He still has his weak and wobbly moments but has generally felt a lot stronger, and the pain has been less. The naturalist hasn't been able to help my husband's urination troubles or dizziness however. Has anyone else experienced extreme dizziness associated with AMN? My husband had an MRI this summer and no brain lesions were found. This naturalist has also helped another man in the community with AMN who is much older than my husband and doing remarkably well for how advanced his AMN is and other men with AMN his age. I would be happy to go into more detail about anything of this, just let me know. Best regards to you all, amlrober
brittcarrier Message
24 Aug 2009, 02:01 PM

amlrober - Thank you for replying. Can you give more detail about the diet and supplements? Thank you!!
Jonathan Message
24 Nov 2010, 12:32 AM

Dose anyone know of any Doctors further south. I live in Dallas and my cusin was just dianosed with AMN. The doctors that we talked to realy have no idea what they are doing.