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SSI Letters from Doctor

cldonnelly
  • By cldonnelly · New reply yesterday at 11:40 pm
  • Discussion in X-linked adrenoleukodystrophy (X-ALD) - Female carriers · 2 replies
  • Hi everyone ~ Can someone PLEASE help me in how and what to have the doctor write up in order to have SSI approve the change of date that they approved my SSI on. I was approved 2/2013 but my symptoms ...

Absence seizure

thanu
  • By thanu · New reply May 19, 2013
  • Discussion in Alexander disease (AxD) - Adults · 1 reply
  • My daughter has been diagnosed with AxD.Over the past few days she was suffering from Absence seizures.She was having it 10-12 times a day and we consulted our neuro and she suggested us to get on with ...

The ALD life of my son Andrew and me

Andrew050625
  • By Andrew050625 · New reply May 19, 2013
  • Journal · 8 replies
  • For Andrew The start I will never ever forget the day when I was picking up Andrew’s diagnosis paper last year 2012 March.On that day it was too late to get an appointment with the doctor and I had no ...

Five million

Brian
  • By Brian · New reply May 18, 2013
  • Journal · 205 replies
  • Dear members, Yesterday, Inspire reached a milestone: five million posts written by members! Each of these posts, and the 700 million words they contain, are a simple measure of how much we all do to ...

female ALD carrier in New York

Bunch
  • By Bunch · New reply May 17, 2013
  • Discussion in X-linked adrenoleukodystrophy (X-ALD) - Female carriers · 7 replies
  • After a lot of looking around I have finally found a neurologist in New York, NY who knows a fair amount about ALD and carrier syndrome. J. Patrick Stubgen, Professor of Clinical Neurology at New York ...

Head pain with tingling and numbness

Smk1264
  • By Smk1264 · New reply May 17, 2013
  • Journal · 11 replies
  • Hi. I'm wondering if any one here has a tingling head sensation at times? I have demyleination changes in my brain and at times I feel a sensation of tingling and or numbness. I have been tested for MS ...

Administering Lorenzo's oil

BigDaddy99
  • By BigDaddy99 · New reply May 16, 2013
  • Discussion in Treatment and therapy · 18 replies
  • Hello everyone, My 10 year old boy was diagnosed in January and was too far advanced for transplant or for Lorenzo's oil. Despite what we've been told, we've decided to give him L. O. ourselves. We figure ...

22 year old with leukodystrophy

Kerigadbois
  • By Kerigadbois · New reply May 13, 2013
  • Discussion in Living with a leukodystrophy · 16 replies
  • Since the age of 14 we thought our son had epilepsy. Throughout his teen years he had great difficulty with school, acting out, seizures, issue with alcohol, the law, and holding a job. Just six weeks ...

Whats the name for this desease.

tarisa
  • By tarisa · New reply May 12, 2013
  • Discussion in Help desk · 2 replies
  • Hi my 4yrs old daughter sometimes like shes in her own world for a sec or less than a minute shes back again. Is that a desease and what do you call it.Thank you ...

Metochromatic leukodystrophy

kgs2012
  • By kgs2012 · New reply May 9, 2013
  • Journal · 8 replies
  • My son was diagnosed with Leukodystrophy when he was 22 years old, however, he lost his gall bladder when he was 10, which according to the neurologist, that is a symptom of the disease. It was never ...

Man

kgs2012
  • By kgs2012 · Posted May 9, 2013
  • Journal · 0 replies
  • He was willing to let me help him today in iowa City. Actually was ready to go through medication evaluation and when the students questions came out, he stood up like a man I've never seen him before ...

ALD Carriers

lindsayjones

Baclofen dosage on ALD kid

Andrew050625
  • By Andrew050625 · New reply May 6, 2013
  • Journal · 4 replies
  • Hi,my inspire friends, My Andrew started Baclofen to treat spasms since 2013/2/25 and is now 2 months.Andrew was diagnosed cerebral ALD 2012/3,he is 8 years old till this end of June and weighs 27KG/59.5LB ...

A new Inspire report in collaboration with Stanford Medical School

Brian
  • By Brian · New reply May 5, 2013
  • Journal · 84 replies
  • As many of you know, Inspire has a professional collaboration with the Stanford University School of Medicine. Inspire members have written personal stories for the Stanford Scope column. I am pleased ...

Newly diagnosed 8yo with Leukodystrophy

rebeccatall

Can no longer do my job

Quiller
  • By Quiller · New reply May 4, 2013
  • Discussion in X-linked adrenoleukodystrophy (X-ALD) - Female carriers · 23 replies
  • I am wondering what to do now that I realize I may have to admit that I can no longer do my job. My legs even with braces and using a forearm crutch are just exhausted at the end of the day and my body ...

working moms with AxD kids

thanu
  • By thanu · New reply May 4, 2013
  • Discussion in Alexander disease (AxD) - Parents · 4 replies
  • Hi , Currently I am a home mom.I have a 1 1/2 yr old kid with AxD and another 4 yr old kid.I am planning to go to work to make both ends meet at least after a year. Please suggest me is it a right decision?Is ...

4H symptoms

2robyn

NYS NB ALD Screening Passed!!

xshootngxstarrx
  • By xshootngxstarrx · New reply April 29, 2013
  • Discussion in X-linked adrenoleukodystrophy (X-ALD) - Parents · 9 replies
  • I just heard word that the NYS governor has passed the budget allowing X-ALD to be added to the newborn screening panel in New York State! The bill will take effect no later than January 1st, 2014. Such ...

Advanced ALD clinical trials

BigDaddy99
  • By BigDaddy99 · Posted April 26, 2013
  • Discussion in X-linked adrenoleukodystrophy (X-ALD) - Parents · 0 replies
  • Below are two links for clinical trials for those with advanced ALD: http://clinicaltrials.gov/ct2/show/NCT01 626092?term=adrenoleukodystrophy&recr=Op en&state1=NA%3AUS%3AMN&rank=3 (Minnesota - Loes score ...

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About this community

The United Leukodystrophy Foundation Support Community connects patients, families, friends and caregivers for support and inspiration. This community is sponsored by the United Leukodystrophy Foundation, an Inspire trusted partner.