Symptomatic Men Community Support Call

[SongStream]

Wednesday, July 17th, 7pm ET/6pm CT:

Symptomatic Men

Facilitated by Justin D'Agostino

Register here: events.r20.constantcontact....

[Aaron98]

Registered! The last call was great - looking forward to this one.

[KennyInPA]

I won't be able to make it tonight, but hope you all have a good call. Appreciate a Cliff Notes of anything interesting!

[SongStream in reply to KennyInPA]

I can't believe I missed the call! And that's with sending an email notification reminder from my calendar the day before and the day of! Those who attended, please enlighten us. Thanks! (Back to burying my face in the sand.)

[SongStream]

I received an email from:

Emma Hayes

Center for Rare Neurological Diseases (CRND)

MASSACHUSETTS GENERAL HOSPITAL

She was kind to provide a summary of the Symptomatic Men Community Call

on July 17th, 2019 @7PM EST

Facilitated by Justin D’Agostino

•Introductions

Family histories of ALD/AMN

Many cases in which urinary issues are beginning signs of AMN

ALD diagnoses came after connections made between Addison’s Disease and ALD in some cases

Reminder to attend annual meeting (click on the link below)

•events.constantcontact.com/...

•MIN-102 Clinical Trial

A few men on the call were in the trial

13mL every morning (syrup in syringe) as trial medication

Most men have been in the trial for almost a year

Some report more feeling in their legs and reduced neuropathic pain (stabbing and burning) after a few months in the trial

Walking tests proving encouraging for some patients

•Addison’s Disease

Different types of medications and doses for managing Addison’s

•Hydrocortisone 3X a day (15 mg in AM, 10 mg lunch, 5 mg PM)

•Methyl prednisone and fludrocortisone once a day

Many become tired and worn out around 6 PM

•Testosterone Replacement Therapy (TRT)

300-1000 are “normal” testosterone score ranges

Below a 300 score, one should consider testosterone replacement therapy

Possible therapies:

•150 mL injection once a week or once every 2 weeks received at a health and wellness clinic

•One pill 3X a week to prevent testosterone from being converted into estrogen

Endocrinologists can also give shots or patients can inject themselves

Benefits include better appetite, stronger muscles, and increased energy levels

•Symptoms of AMN

Incontinence

Difficulties with walking, balance, and gait

Some neurologic involvement

•No logic in common sense situations

•Suspected that there is a spectrum of neurologic involvement related to cognitive function

Different forms of the diseases

•Some doctors are working on different alleles of the gene to determine varying phenotypes and try to predict the probability of each phenotype

•University of Minnesota is conducting this research

•Pain Management and Assistive Devices

Many report neck and back pain

Some list to one side and have balance issues (may cause back pain)

Hip Flexion device to help pick up legs and improve balance and walking

•Can be for one leg or bilateral

•Made by Becker Orthopedics (online)

Braces for walking and gait

•Mechanical device to lift ankles up and help with proper heel-toe walking

Keep leg muscles active so they do not atrophy

•Walking and other types of leg exercises encouraged

•Important to accept disease and find others in disability groups who can relate to your situation

***THE SUGGESTIONS MADE ON THE CALL DO NOT REPLACE YOUR DOCTOR’S GUIDANCE/ORDERS AND ARE MEANT TO HELP FELLOW PATIENTS LEARN FROM AND RELATE TO ONE ANOTHER