Hello from Michael Conway

[MichaelConway]

Hello. I am Michael Conway, almost 50 years old, from Renfrew (near Glasgow Airport), in Scotland.

I have been seeing a neurologist for about five years. My symptoms are very bad balance, falling about as if I am drunk. Also, I get pains in my upper arms and legs sometimes. I have a particularly bad memory.

I received about 8 x MRI Scans and 3 x Lumber Punctures and an electrode test to my feet / lower lags and several very long fatty acid tests.

Last Christmas eve (2015), my neurologist thought I had MS, but in May/June, after more tests, told me I had ALD. I have now only to see my neurologist on an annual basis. I have two appointments coming up. Tomorrow (13/10/16) I've to go to a Genetics clinic and on 27/10/16, I've to go to a Endocrinology clinic.

As a side issue, my father had Motor Neurone Disease an my maternal uncle had Addison's disease.

What is your story?

[SongStream]

Hi Michael. I'm Steve from across the pond in California. I am 54 and was diagnosed with AMN 16 years ago after my brother. We both had Addison's first in our late teens with my brother being diagnosed after an Addisonian crisis. As for myself, I have all the usual suspects: numbness in lower extremities; leg spasticity and foot spasms; fatigue, overactive and flaccid bladder; and neuropathic pain in the soles of my feet. I've also been aware and concerned about my short term memory loss. I have an annual MRI and see an endocrinologist, neurologist and PCP which coordinates my care. Since my doctors are unfamiliar with AMN I keep them apprised of all the latest information that I've on this site as well as others.

[Andrew-432]

Hi Micheal I had a few MRI scans and lumber punctures at first they said MS then changed it to HSP at first it was thought to be a bad cartilage in my left knee. IN 2011 my grandson was diagnosed with ALD so i had tests and a year later i was diagnosed with AMN, I have bad ballance problems week legs bowel and bladder problems i see doctors on a annual basis i also have addisons if you would like to know anything else just ask.

[wilburlois15]

Hi Michael. I am a 39 year old male living in southern England. I was diagnosed with AMN last year after experiencing symptoms for 10-15 years. I walk badly and have some bladder issues. No Addisons. The first couple of doctors I saw presumed I had MS but MRI scans showed that this wasn't the case and the trail went cold. It took a third doctor and a VLCFA test to show that I have the defective ABCD1 gene and AMN. I have the annual brain MRI scans and do some regular exercises but thus far that is about it. Angus

[Vanliz]

Hi everyone. My husband was diagnosed with Addisons as a child about 40 years ago. After the typical balance, pain falling issues, he was diagnosed with ALD about 25 years ago. He has no formal care or reviews for his ALD, just an annual endocrinology review. I am pushing for a re classification as he sits more in the AMN group of symptoms. This year has been the worst ever. He has developed non specific abdominal pain that is so severe he is in tears and can't function. No one is helping as no one knows whats wrong with him. Do any of you have any ideas. please help, we are a young couple with no life right now and feel completely alone. we live in Aberdeenshire. TY xxx