als without upper motor neurons not affected

andreas · 01-25-2005, 03:23 PM

Al, thanks for your reply to my boad question...i must confess that it might be the deniAl syndrom, but i still think am not about to die, i just learnt of this death sentence this morning, and i am still dumb with shock, Although i must confess i still have a series of tests to undergo to confirm what i have...but can someone tell me how i can have Als when my upper(brain motor nuerons) are not affected and my nuerologist swears to me that it will only remain in my lower motor nuerons?.....i sound desperate because am desperate..pleaseeeeeeeeee anyone out there hear and feel my desperation?????????

Al · 01-25-2005, 03:32 PM

My suggestion to you would be to go to the other site i Mentioned. cdnpals.ca the webMaster pals Mike is Much More knowledgable about als than i and he Might be able to better steer you in the right direction. you can eMail hiM personally froM the site if you like.

trisha p · 02-16-2005, 01:02 PM

Andreas,
i am so sorry to hear about your diagnosis. my brother was diagnosed with als in april 2004 and his reaction was very similar to yours. we thought he was just suffering from carpal tunnel syndrome and the news was devastating. i hadn't joined the forum before reading your posting but felt compelled because my brother still does not show any signs of upper motor neuron degeneration. the problem is that it is so difficult to compare symptoms with other als patients to determine whether your symptoms indicate als or not because als affects everyone so differently in the beginning and throughout its progression. from what was explained to my brother, the neurologists will not offer a diagnosis until they are fairly certain that it is indeed als. but please do not give up hope !!! the tests could possibly indicate another neurological disorder that mimics als but it sounds very similar to the onset of my brother's symptoms. only the doctors can give you an accurate account of what is or is not happening.

my heart goes out to you and your family - my brother is also 38 (diagnosed at 37) and it's been an emotional struggle. but pleaase stay encouraged and hopeful and rely on your faith (if you are a believer) and the love of your family and friends because these things will help you on a daily basis. and keep a sense of humour about everything because laughter can help you overcome the darkest of moments. i will be praying for you and your family. god bless,

trish

andreas · 02-17-2005, 04:38 PM

Thanks for your kind reply, i have not been arround because i have been in the hospital for the last two weeks, and i have been told by the doctor that i indeed have als. my right hand has started going fast, just as my left hand, but my left leg seems to be just like it was when i noticed that something was wrong with it. at the moment i am only using rilutek, one in the moorning and one in the evening. how is your brother progressing? does he still have the use of all his limbs? you mentioned that i should have faith... you will be surprised to find out that i have so much faith in god and his love and mercy for his children that i ahve absolutely no fear of dying in five years as doctors usually tell us... life is god's own to give and take, and it is not for doctors to tell us just when god will take what is rightfully his. although i must confes that sometimes i can be overcome by fears, but that is only human. i'm catholic and my faith teaches me to believe in god's power and mercy and that keeps me and my family... i am quite sure that ten years from now i will still be comunicating with you and a host of other als positives who will share my faith, and accept god's mercy.
i hope to hear from you
my regards to your brother

my e-mail address is: cia1966@yahoo.com

any person who is interested can add me into his yahoo messenger... so we can share experiences.

Carol Deboer · 02-17-2005, 09:42 PM

Hi andreas,

welcome to our Home. i am sorry to Hear about your dx. it really is a blow to Hear tHose words. i remember sitting in tHe doctors office and Him telling Henry and i. you feel numb. 8 years later, i still feel numb. even all we Have been tHrougH, and continue to go tHrougH it never cHanges. and you are rigHt, god is tHe almigHty Healer and giver of life and of deatH. we Have to ready to accept His grace and carry on witH tHe faitH tHat He Has also given us. i pray tHat god will lay His Healing Hands on all of us tHat suffer witH tHis als tHing, and tHat we migHt overcome feelings of despair and grief knowing tHat tHere is not alot tHat we can do to reverse tHis ailment. (yet) Having your Head on straigHt is also a big plus. i know, i know tHat sounds stupid, but, tHink in tHe now, and prepare for tHe future. tHat is important. do wHat you can now. do not wait. if you want to jump out of a plane like al did, do it. some of us cannot even begin to understand tHat one, but al liked it, so i guess all of us do !! anyway, i Hope tHat you will find comfort and some support Here, and remember tHat you are not alone in tHis battle. we are Here for you and your family, and we are praying for you too. take care dear, and Hope to Hear lots from you....

stay strong....

crol

Carol Deboer · 02-17-2005, 09:44 PM

Man, i cannot even remember how to spell my own name !!!!!!is that not terrible. ha....

c a r o l

lol

Al · 02-25-2005, 04:06 PM

Too much wine i think carol? we are off To tampa for a while Tomorrow. supposed To rain here in ft. lauderdale for the next few days so might as well go west. hope everyone is as well as can be expected. take care. thinking of you all every day.

mannco74 · 02-25-2005, 07:08 PM

Andreas,
like everyone i am sorry to hear about your dx. limb onset is usualy the least possible evil is all i can say. the web owner of alsindependance has had it for at least 15 years and still walks...... there are no foregone conclusions... get the most out of each day and do the things you dreamed of doing. all the best.

your pals
chris
dx aug 2001