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sorry grampal i forgot to answer your question i have no other symptoms yet other than paranoia thanks bogey
 
The main reason I make a lot of posts is that this site used to be the ALS Society of Canada's support forum. I spent quite a bit of time on there. They decided to close it and David the Administrator and I took it over. It is our baby. David owns it and I do the day to day looking after it. I have ALS but David does not. He is a web designer and did work for the Society and became involved because of seeing how much we depended on the site for support. So that might explain why to a lot of others that I am around here a lot. Try to stay calm. It may take a while as I and others have said to figure out what you have. Live for today. Worry about tomorrow, tomorrow. AL.
 
Jamiet said:
David,

Sounds like were in the same boat, except i should have about 33 more years to retirement, which makes me 32 and wondering how this happens at this age?...My symptoms have progressed pretty rapidly. The neuros even got me seeing shrinks at this time because of the hypochondriac think you mentioned, but, i'm a smart fellow and know my body and know what's going on. Yes, i'm one of those guys that are so nervous in the exam, i look like an idiot, trying to point things out to them and can't sit still.

One item of interest is your tongue atrophy. What did it look like to start and how has it progressed as far as how it looks, feels and works/moves?

Well, I have to say that I'm sure it is much harder to deal with at a young age than it is at an older age. Lots more to lose...

To clarify...it is vocal chord atrophy that I definitely have. This was seen by an ENT when looking into why my voice had gone hoarse. He is the one who pushed me into the clutch of the neurologists.

Hopefully, you will be able to calm down a bit with some time.:)

DavidGL
 
Chills

Do any of you experience chills alot?
 
First off, I would just like to say that I can not imagine the anguish felt by all who are awaiting a diagnosis. Like many of you have said before, the unknown can be much more torturesome than actually knowing your fate.

ALS runs in my family, so the longest part of the diagnosis process for my mom was actually facing the fact that she was having symptoms and calling the doctor. She pretty much new she had ALS the first time she stumbled in high heels. But she had lost a lot of weight which was not typical for my grandfather or my uncle, so that was ourcrutch, our factor for denial for a short while.

My mom did complain of a noise before her diagnosis in Dec. 05'. She explained it as a sort of gushing sound, like the sound of blood rushing through her veins in the side of her neck and head. I have been reading these posts for awhile, and I am ashamed to admit that my knowledge of other forms of ALS (other than the kind my family has) is limited. For instance, I don't know what MND is exactly, or PB. I'm very curious to know what fasciculations are as well as scalloping of the tongue. I don't mean to sound silly, but I just thought I'd clear up my confusion.

I'm praying all who are waiting for some kind of diagnosis, hear only good news and no talks of ALS. I don't have the disease and I haven't developed symptoms, and I pray that I never do, but the fact is that I have a 50% chance of getting the disease as well as alot of my family members. So my heart breaks a little more everytime I read another story about another person being tested or recently diagnosed. On a more positive note, I was very fortunate to stumble on to this forum. I come here everyday I find inspiration in the most unexpected places. Thank you to ALL!:)

God Bless to ALL!
 
Sara- let's hope your 50/50 chance works out to be a 50% chance of NOT getting you family's disease!

Al- thanks for the history of this site. It's always nice to know how things came about. I saw where suddenly I am a senior member. Did I read that right? If so, what did I do to earn this distinction other than being one of those people who doesn't mind putting in her 2 cents worth every now and then....:-D
 
Well you hit the nail on the head. If you babble here enough we promote you to a new level. LOL. Basically if anyone reads those things (I do) it tells that you are a bit more experienced at this than the person that just has few postings. You may not have been dealing with ALS as long as some but at least you have been here for a while and just might know what you are talking about. AL.
 
Alright, so now I know that fasciculations are twitching like I figured, but I still don't know what scalloping of the tongue is.
 
Just a guess but think it might be when it turns white on the surface and cracks and looks like shingles when they overlap on a roof. Thought someone described theirs as loking like that. AL.
 
Al,
Is Scalloping painful and does it make your tongue turn white? Reason I ask is for about 2 months now or more have noticed white coating on my tongue, I try to brush it off when I brush teeth, but it just seems to reappear. Sometime it is painful but other time just bothersome. It looks like thrush but is not as painful.

Ellisa
 
Jamiet said:
Hello all,

I've read alot of the stories here and would like to share mine to get ordinary lay persons opinions whom are living these nighmares that we share. My symptoms started in Aug 2006 with widespread twitching. Nothing thought of it, however, went to neuro in 9/06. Stated it was anxiety / depression. 10/06 noticed my left arm was smaller than right. This put me into a real panic, based upon my research and the confirmation from my wife. Her words were "your left arm shrunk" when i pointed it out to her. Since then, the twitches have changed course, moving from all over, and not real focused, then to "electricity" type in my legs and certain leg muscles, now to like little popping, here and there and sometimes a "hot spot", such as my abdomen for about a day and my left arm on and off. I and only i notice the following symptoms have also progress in the last 30 days. I've got scallop marks and a rough tongue, and it appears to be smaller, specifically, the left "driver" side, although, this could be nervousness and me examining it so much. Also, for the last few days, it's like burning and tingling, or just irritated. Some quivering, but not alot and not all the time. My right foot, the heel seems smaller and my boots are definitely looser. I've had episodes of clumsieness and dizzy spells, throat hurting. I also get the chills alot. Had extreme fatigue for about a month, but is a little better now, however, it seems from about 3:00AM to 10:00AM, its really difficult, can' sleep and then can't get out of bed. My hands and forearms hurt in the mornings, to the point my wife has to massage them. My thumbs and the area around them appear to be atrophying, but it's minimal and no one else can see this except for me, but it seems pretty symmetrical on both sides, happening at the same time. My right leg also feel funny and the reflexes are brisk, noted by neuro in houston. They used to be normal?

I've got this ticking noise that i and only i can like hear or almost feel, it goes from the back of my head / neck down the base of my spine. Really hear this at night or in the morning, in bed or when the phone is to my ear.

I've had all the MRI's, about 40 tubes of blood and two EMGs, all clean and normal. The latest EMG was Oct 30, which was within normal limits, no denervation, but i'm almost sure they picked up facultations, as i could hear the ticking. I've seen 4 neuros, including one at Houston Methodist ALS Clinic, but this was Oct. 30, and it seems alot of progression (the foot, tongue and thumbs) since then. Seen another neuro a week ago, showed him my tounge, but he says again, he's followed 100 to 200 ALS patients in his history and i dont show the signs, come back in 1.5 mos.

What do you guys think, as i will either have to not be able to walk, talk, eat, it seems before they become concerned.
I had all the same symptom it took 6 years and 5 doctors before i recieved a diagnosis of ALS and by thay time I could have diagnosed myself All my test were all neg. and they still are after 7 years with symptoms . I started with my speech and now my arms are weak and athropied I get twitching and arm pain like i been lifting weights I have facultation in my tongue I choke on water I have that clicking you spoke about in my ears, my shoes are big on me I know my legs are next but I am doing my best to be possitive and not let ALS get to me. GOOD LUCK pat
 
sara06 said:
Alright, so now I know that fasciculations are twitching like I figured, but I still don't know what scalloping of the tongue is.
Thats atrophy of the tongue I have the scalloping too. Pat
 
My toungue is very pointed. I don't know if it way always this way but I don't think so. It just looks different now.

Al, It is nice to make senior membership but will you tell my family that I know what I am talking about? Just be prepared for lots of funny looks, is all...
 
Yes family, on the surface it appears that Cindy knows what she is talking about. I don't know if that applies to all topics but she is becoming well versed in the weirdness of ALS. AL.
 
Thanks, Al. That gave me a case of the giggles! I think my family would say "appears" is the operative word, here, in your statement.:-D
 
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