donate_button

Dianne’s story

10th December 2014

My name is Dianne Hedger, I am 57, Australian (living in Darwin, Northern Territory) and suffer symptoms related to AMN. I am interested in getting in contact with other women who are asymptomatic carriers, to share experiences, symptoms and possible areas of help for this condition. Our son Gerem was diagnosed with ALD in late 1984 and was sadly taken from us at age 9 in 1986 at about the same time Lorenzo’s parents were experimenting with Lorenzo’s oil. My brother Garry was also taken from us four yrs ago at age 48 he suffered for many years with AMN (he also tried Lorenzo’s oil with little affect). I have an older sister (59) who is a little further along with AMN than I am but we basically suffer similar symptoms. Our mother of course also has AMN but because she also had polio when she was in her late 20’s and suffered similar symptoms with her legs, it was assumed this was from the polio. She is now 84 and still suffers weakness of the legs and has white matter damage and severe dimentia. It is interesting to note that her symptoms had never reached the levels of my sister and I, maybe she was just braver! We have been told that it is not uncommon for these conditions to become more severe as the generations go by. Fortunately now it has ended in our family. I have a healthy son and daughter who were not affected and three wonderfully healthy grandchildren. My symptoms at present are: Physical Poor balance Tendency to veer & run into things Nerve damage to the extent my legs do not get the message to lift causing regular trips and falls Weakness / lethargy in limbs especially legs – some days worse than others Walk with spastic gait Right knee gives way periodically Pain & stiffness in lower back, hips and calves (in bed and after having sat down for a period) Pain, throbbing, tingling in right foot arch (worse during and after walking even short distances) Pain & tenderness on right heal and ball of foot which worsens during and after walking (diagnosed as plantar fasciitis caused by a tightening of the muscles) Extremely slow walking and unable to stand or walk for any length of time Cramps in calves and feet (mainly at night) Uncontrollable spasms and nerve jerks in legs Nerves in legs continually active Head and hand tremors Slow and very poor handwriting weakness in hands/arms Ringing in ears Periodical incontinence – bladder & bowel suspect hearing problems Psychological Poor and diminishing memory especially short term Poor concentration and listening ability Confusion and diminished ability to grasp things Extremely emotional and sensitive Loss of perspective on occasions Slower at accomplishing tasks The only drugs that I have taken that have given any relief for my symptoms is Panadol Extra of which has 500mg paracetamol and 65mg caffeine. I rarely take these drugs as I am afraid of becoming addicted (my brother became addicted to many of the drugs he was given with quite adverse affects, then again he suffered much more pain than me), they also keep me awake at night if I take them after lunch time, they can give me heartburn as well. I came upon Panadol Extrea by accident when in Vietnam, they are not available in Australia. I have used Baclofen for spasm etc but do not like the side affects (tireness during the day). One thing I have become aware of after living in Hanoi, Vietnam for 3.5yrs, mainly because they have a normal winter + very hot humid climate there (in Darwin it is basically just hot & humid), is that I suffer more from the pain & stiffness in the humid weather, sounds crazy I know and haven’t worked that one out yet. We thought maybe I may have been suffering from arthitis as well so undertook $800 worth of xrays and scans only to be told they could only find a small amount of arthritic activity in my lower spine. I have not seen a neurologest in over 4 yrs but have an appointment in November. I am not keen to have a brain MRI (I had one many years ago with no adverse signs) as I wonder, do I really want to know as there is nothing that can be done anyway! Am interested in chatting with others. Kind regards to fellow sufferers and families of ALD sufferers Dianne Hedger PS My sister just emailed me a testimony of a family with a young boy who is suffering from ALD, who used magnetic products by Nikken (symptoms only), this little boy has supposedly found relief from stiffness and pain using their products. Web site: www.nikkenau.com/products/1.cfm?PROD_ID=2006. I believe it’s expensive but my Dad who is a Parkinsons sufferer began to use the Magstrides (shoe inserts) for the first time today, will keep you posted on that one.

Facebook