need a Doctor

We moved to southern Ohio, Near Huntington West Virginia. Need a Doctor who is familiar with Leukodystrophies

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Hi , I have un diagnoised Leukodystrophy , I was diagnoised in march of 2008 and still have no clue. I am 40 years old. I see DR. Marvin Natowicz ,he is genetic heath care . He is really good but he follows you but not like a nerologist would He is trough the Cleveland Clinic. I am seeing a nerologist at cleveland clinic Melen Center but, they specialize in Ms but they know about white matter diseases. Or you can call united Leukodstrophy Foundation at 1800-728-5483 they will be able to tell you of a doctor in your area or closes doctor. E-mail me any time at rlrsgr@yahoo.com if you just need someone to chat with thats going trough it to I know I do at timesAlot of times. God Will get us through this. God Bless! Saina

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What type of Leukodystrophy do you have and when if you do not mind my asking, were you diagnosed? I took my husband all the way down to Jacksonville FL., to the Mayo clinic to be diagnosed. This was a long process, as the disease progressed. Once we went through a long period of diagnosing, we were given the bad news of HDLS, which is an extremely rare form of adult onset leukodystrophy. A treatment plan was set into motion, supportive care for symptoms being all that is available to us. Once I had that setup, we then returned to Ohio, and began the search for Drs. to work on our care team. That involved many Drs., Primary care, Urology, Infectious disease, and local Neurologist. We estblished a relationship with a visiting nurse asso. and then set up weekly visits by a home nurse and home health aides to assist in my husbands, rapidly declining health. Our Drs in Fl. still loversee everything and we communicate on a regular basis via email and phone. There is no one Dr. that can take care of all your needs as your disease progresses. It is important to set up an established treatment plan, and then a care team. This multidisciplinary approach to my husbands care seems to be working, after some effort and multiple phone calls, and several DR. visits. It is no small thing getting my husband to the doctor, seeing as now he is bedfast and must go by ambulance to DRS vistis. That might be something to consider when looking for a doctor...is the doctor willing to do home visits? We now have a primary care doctor that will come into our home.
I hope this helps give you an idea of what can be done. Contact me if you like at Emajean322@aol.com, or on this network. God's speed to you and your family
Lisa

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My daughter is 28 and began showing physical symptoms of Leukodystrophy approximately 5 years ago. She is in a wheelchair now. She is, I guess, considered classified now, thanks to all the doctors at the ULF Conferences in Chicago (you should go if your loved one is unclassified). My daughter is considered to have SPG11, or Anterior Thining of the Corpous Calosum. Her blood is in Paris still being tested to confirm this, but the doctors feel there is no doubt. We also went through all the years of testing and looking for answers. Because we live on the east side of Cleveland and saw Dr. Marvin Natowicz as well as Dr. Richard Lederman, both at the Cleveland Clinic, but Dr. Lederman does not specialize in Leukodystrphy. There are few Leukodystrophy specialists in all of the U.S., most on the east coast (Philadelphia, Maryland, Boston). We also visited Massachusets General Hospital in Boston and saw Dr. Gilmore O'Neil there....his specialty is Leukodystrophy and he's also very kind, very personable, very helpful. He knows Dr. Natowicz, as many of these doctors do know each other. If you can go to the ULF Conference in July, do so. For now, if you can get to the Cleveland Clinic, I would do that. I hope this helps.

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Hello Paul,
My daughter Susan was diagnosed with VWM Disease in December of 2003 by Dr. David Lynch at Children's Hospital in Philadelphia. Her diagnostic testing was all performed in the Allentown area of Pennsylvania. She will be 30 years old this August. My heart goes out to you because I know what you will be going through. I will be more than happy to help you in any way I can.
Larry

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Irene G-

You mentioned there's a physician specializing in leukodystrophies in Philadelphia. Do you have a name or where he/she is located? We live in Rochester,NY and would love to find someone who has some experience with ALD. Thank you!~

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We live in the Cleveland/Akron area. My son Ryan has MLC and was diagnosed at the Cleveland clinic. Dr. Bruce Cohen diagnosed him and Dr. Gary Hsich is his neurologist that sees him on his checkups. His number is 216-444-5559. He should be able to help you out.

Don

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