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DMHltd

Member
Joined
Jan 9, 2008
Messages
20
Reason
Learn about ALS
Country
US
State
Iowa
City
Des Moines
I've spent most of the afternoon and evening reading posts on this site and first I want to say that it's obvious there are a lot of caring people here. I've been inspired, saddened, gladdened, and now emboldened enough to make this post. I'm a 61 (today) year old male with high BP, type II diabetes, GERD, gastric polips, gynecomastia, overweight (or under tall) :) and drink to much. However it's no fun to drink when you are scared sick. I don't exactly know when the fascics started. I know back in July 07 I had a couple of days when my left thumb started twitching toward my index finger. I had just seen on TV how Michael J. Fox's Parkinson's started with a finger twitch so I thought "Oh Boy, Here we go". I admit to being a cyberchonriac. Every time I get a symptom I'm on the net and convinced I have a life threatening disease. Then I started getting fascics in the arch (what there is of it since I have flat feet) of my left foot. I've always had some tingling in the feet and coldness which I atribituted to the diabetes and I thought that might be the cause. It wasn't painful so I ignored it. Then I started to see them in my right arch. These were slow and sometimes would cause my toe to move. Sometimes they wouldn't twitch but just tighten for a while. When a very rapid twitch occurred nearly all evening just to the left of my right knee I started surfing the net. About this time I started getting pins and needles, what I now know as Paresthesia. At different points and different times throughout my body. These were single pin points not multiple pins and needles like when your hand goes to sleep and wakes up. I've also had feelings of something clawling on my skin at times or as if I just walked through a cob web and got it on my face. I finally went to see my GP in December 2007 and he refered me to a neurologist. The appointment is on January 18th. As I read in posts and other thinks on the net I get ups and downs. "Hey I don't have that, so I might be OK", "Oh no, that's exactly what I have, I'm done". I didn't have any weakness and I read that fascics without weaknesss was not a diagnosis of ALS. What do you know the next day I started feeling weak in the knees and today just talking on the cell phone made my arm tired. That really freaked me out such that I tried to make an earlier appointment fearing that every day mattered. Of course from reading the posts I won't know anything until a prolonged period of testing. I realize that the fact that everyone presents differently or exhibits "some" of the same symptoms but maybe not in the same order, makes it hard for even the Doctors to figure anything out. I did call the local ALS organization and asked if they had heard of the neurologist and they said yes he was a good Dr and had made some referrals to them. Anyway sorry for the verbose post but that's my story and I'm sticking to it. P.S. excuse my typing I also have brain fade and dyslexic fingers.
 

AHands

Distinguished member
Joined
Dec 10, 2007
Messages
206
Reason
PALS
Country
US
State
NC
City
Carrboro
"Paresthesia"! Thanks! I get that creepy spider-web feeling too--a faint itch on the back of my head, then my chest, then my shoulder, then my chin, etc... I believe the last neurologist I saw also called it "Paresthesia" but I'd forgotten the word.

In March, it'll be three years since the first neurologist told me he thought I have ALS. I've got very visible muscle loss--three years ago you could just look at my hands and see the thumb muscle was literally gone, not there, yet still no official diagnosis, and I still bicycle to work, so don't write yourself off yet!

And do not expect any concrete answers from the neurologists any time soon.
 

ccox

Active member
Joined
May 30, 2007
Messages
71
Country
US
State
TX
City
austin
Diabetes, being overweight and alcohol all impair proper blood flow. I would guess that you are feeling twitches because your muscles aren't getting the blood flow they need---similar to when a body part "falls asleep". Weakness in muscles is also affected by being overweight and not using the muscles. People that don't have ALS, but are bed-bound lose muscle tone from simply being inactive. Remember that people are much more sedentary in the winter and more aware of every little ache and pain. Especially in the northern states where you can't get out too much.
Think about taking a short walk every day---even if it's in the house (I see you're in Iowa--bbuuuurrrr!). Walk with purpose, swing your arms. Get your blood moving a little bit.
It's good that you see that you are a "cyberchondriac". I think you still realize that things aren't "this disease or that disease" purely because you match one symptom.
I wish you good luck on the 18th and hope like crazy the doctor finds you as healthy as can be. Take care of that diabetes.:-D
 

hardestthing2do

New member
Joined
Jan 9, 2008
Messages
2
Reason
PALS
Diagnosis
10/2006
Country
US
State
IOWA
City
WEST DES MOINES
Wow, where to start. How to start? I have read and read the site from a to z and WOW. You all sound so great. I am glad to see that everyone has bad days, and there are some good day in there to.

I am the single mother of four children. None of them are older than 14 and as young as 7. I think the hardest thing for me right now is to know how to feel. And that changes with the wind! I can get up in the morning ( notice I didnt say wake up...whats sleep?) and say today it will be better, sometimes I will, not hurt as much be a bit better. Then there are other days where I can say today I will be better, and never make it outta bed with that thought. Right now, in my world I have so many things to think about and it gets hard for me. I have serious serious issues with trust and NOW I have to rely on someone? That is so hard. I have known about this for a year, DX in Oct/06. I did fine, kept it all away, But now I have kinda told my kids, and God only knows that my world hit the fan with that.. it so much harder for me. I am so scared of facing those in my life, my church, my kids, my-ex, my friends... I think the first thing in my life that I have to do, is understand that the few that I have allowed to be in my life, are trying to be there for me and my kids. How? I hope there are others in here that have this same issue...
 

Icanmanz

Senior member
Joined
Jul 14, 2007
Messages
947
Reason
PALS
Country
Uni
State
Texas
City
Tomball
2do, first of all, let me tell you I am so sorry for the issues you are encountering in your life. I read your post more than once, and I am sorry to tell you , it has a few twists and turns. I am still going to give it my best to reply, and if I am replying to the wrong thing, please let me know. Okay, I had to read, to try to follow your post again, and fully understand it. So you are saying that before you hop out of bad, you promise yourself to have a better day, right? No offense.........please, no offense........but in your post you did not mention God, not once. Maybe if you'll reach out to him, and ask him for guidance. Talk to your children, your ex husband, friends, church friends (especially them, I am sure they'll understand), and even be of some help. Did you not say in your post that you have been diagnosed'ed? Is that with Als? That is where I am confused, if it's als, you know, I know, and the forum knows there is no cure, but hey, prayers can take you a long way. Prayers can ease your fears some, Oh God, why am I putting it this way? I HAVE NEVER BEEN IN A PALS SHOES. I apologize to all my Pals friends. I know it's easier said than done.

2do, may I ask you why you are afraid to face your church, ex husband, and friends? An explanation would be of so much help! May God bless you, and your children.................... Irma
 

patricia1

Very helpful member
Joined
Sep 18, 2006
Messages
1,149
Reason
PALS
Diagnosis
7/1999
Country
US
State
newjersey
City
lopatcong NJ
Everyone finds comfort in different ways I find it in prayer I know I am here 9 years because of God .Not because coQ10 B vits vit e and c and not any medical break thru .I am here because of god, and if he doesnt cure me of aIs know there will be a cure around the corner for all. Its my belief that helps me cope. If he gives me the strenght to except this disease that will be half the battle. So no matter who your god is Turn to him or her. God bless Pat
 

hardestthing2do

New member
Joined
Jan 9, 2008
Messages
2
Reason
PALS
Diagnosis
10/2006
Country
US
State
IOWA
City
WEST DES MOINES
2do, first of all, let me tell you I am so sorry for the issues you are encountering in your life. I read your post more than once, and I am sorry to tell you , it has a few twists and turns. I am still going to give it my best to reply, and if I am replying to the wrong thing, please let me know. Okay, I had to read, to try to follow your post again, and fully understand it. So you are saying that before you hop out of bad, you promise yourself to have a better day, right? No offense.........please, no offense........but in your post you did not mention God, not once. Maybe if you'll reach out to him, and ask him for guidance. Talk to your children, your ex husband, friends, church friends (especially them, I am sure they'll understand), and even be of some help. Did you not say in your post that you have been diagnosed'ed? Is that with Als? That is where I am confused, if it's als, you know, I know, and the forum knows there is no cure, but hey, prayers can take you a long way. Prayers can ease your fears some, Oh God, why am I putting it this way? I HAVE NEVER BEEN IN A PALS SHOES. I apologize to all my Pals friends. I know it's easier said than done.

2do, may I ask you why you are afraid to face your church, ex husband, and friends? An explanation would be of so much help! May God bless you, and your children.................... Irma

Irma,

I spend every waking night praying, spend most days when I am not busy, praying and seeking scriptures that encourage and lift me and my friends up. I rely very heavily on My God. He is everything I have right now.
umm... let see ... ALS is what I was told. worst words in the world. And as far as why I dont tell my church, and my ex? Its not me. I dont have another way to tell you ...
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hello. I am sorry for your DX. You have a lot on your plate right now so no wonder you find things "hard to do." I was wondering- what, in your life, is the hardest thing to do? You don't have to answer that if you don't want to! :-D Peace, Cindy
 
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