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Hello All:

I am new to this forum....I read some of the postings yesterday to get a feel for the replies and knowledge of the members and was very impressed.

I was told that they "think" I have ALS. As "we" that are going through this have been told there is no real test to say for sure if we have this or not, so I was told to go home and wait for more symptoms. I have had the MRI (normal), EMG (no muscle damage) and a Single Fibre EMG, this is when they said we "think" you have ALS. This was in March 2005....first noticed trouble speaking in February of 2004. I am now to the point that I can no longer speak at all, very frustrating for those of you that are going through the same thing. Nothing else is affected I am still walking, driving and not tripping or falling. My only thing is the speech, eating and swallowing. I have excess saliva which at times is very hard to deal with, especially when you swallow and it does not go anywhere.......

Well, sorry to just blurt all this out....I guess I just needed to get some of this off my chest. Any replies are more than welcome or suggestions on how to deal with or cope with this very frustrating dilema.

Thank you to those that bothered to read my gibberish.

Jennifer

Hi Jennifer,
What you wrote is not gibberish! Thank you for coming to this forum.
It must be hard to know that maybe or maybe not you have ALS. It is so hard when they have to rule everything else out first.
I can relate to the speaking, swallowing and saliva problems.
Try to stay positive, keep active and give lots of hugs!
Come back anytime you feel like talking.
Hugs and prayers, Leah

Hello Leah:

Thank you for your response, it is nice to know and not nice to know that someone else is going through all this. I say nice to know because you don't feel so all alone but not nice to know because we shouldn't have to go through this.

How long have you been going through this and how do you communicate with your family. I get so frustrated trying to answer a simple question like what is for dinner and my poor husband tries to understand and then when he doesn't get it I get even more frustrated.

I try and stay positive and believe me for the most part I think I have done pretty good but I have my days.....last night was one of them, after going through the site and reading the posts I just couldn't hold back and broke down last night and had a bit of a cry.

I once asked someone what they thought I was to learn from this and they told me maybe I wasn't to learn but to teach, wow I had never thought of that but it helps me sometimes get through the frustrating periods.

Well, again I have gone on and one but I do appreciated your response.

Take care,


Jennifer

hi Jennifer. Sorry about your almost a diagnosis. Sometimes being told it may be ALS is worse than being told outright that you have it. At least with a confirmed diagnosis you can make definite plans. With a maybe you might hold back on doing something like a big trip or something because you hope that it isn't so bad. Has your doctor suggested Amitriptyline for saliva. I use it and it works pretty good although I just use it at night. Also on another topic here I mentioned the Symposium in Toronto June 2. They will have people there with different types of communication devices which by the sound of it is what you need help with.If you go to the alsont.ca website you can get more information. Don't worry about anything said here. If you need to vent or whatever this is the place to do it. We are all going through the same thing. You are not alone now. Take care. Al.

Hello Al:

Thank you for your reply....I feel much better knowing that this is a safe place to vent if need be and I am sure we have all been there.

A bit off topic here for one minute. Is it possible that at one time you had a cottage in the Wasaga Beach area. I used to know a family up there that lived in Orangeville but I never knew the Dad's name.

Sorry if this is getting too personal, just thought I would check it out....would be strange if this is the same family.

Well, again thank you for chatting with me and letting me know that we are free to share our inner thoughts and feelings.

Take care,


Jennifer

No unfortunately we were never rich enough to have a cottage in Wasaga. We used to get there with friends though. Actually we just moved to Orangeville last Oct. We were in Brampton before that since 1972. Grew up in Lakeview area of Mississauga. Hey maybe all that pollution from the Hydro Generating Station there got me into this mess. I've never thought of that connection before. Something else to ponder. We try to not take ourselves too seriously here. So vent, laff, cry, whatever gets you through the day. Take care. Al.

Hi Jennifer,
Yea, I know the frustration when someone does not get what you are trying to say!
For me, the thing that works best around the house is a little whiteboard with erasable markers. I find it the quickest method. You can get these at the dollar store, or Walmart. my hands are still ok to write.
I also have an agumented communication device that is a small computer like device that I can type into and a computer voice says whatever I wrote. It works well also, but the kind I have is an older version, I think some of the new ones might be even better than what I have.
As for the frustration, humor helps us through!
Hugs and prayers, Leah

Hello Leah and All:

Thank you so much for your kindness, I truly feel that I have been welcomed onto this forum.

I am not sure if this is a symptom or not so I thought I would just throw this out there. I am having great pain in my right shoulder. One night I reached into the back seat of our van and since then I have had a problem moving my arm, like to pull up my jacket, lift my arm up too high or just reaching behind at all. I know that you are not to be in any pain with ALS, well except for the cramping of feet ect.

Well, let me know what you think. As I say I thought I would just throw this out there...all comments welcome.

Thanks all,


Jennifer

Very new to the site....my father is newly diagnosed....familial als....how do the doctors determine the type just through an office visit? It was a neurologist - I'm just wondering if there is a specific protocall for the actual diagnosis.

Try this website as it explains some of the criteria for a diagnosis.
http://www.wfnals.org/guidelines/1998elescorial/elescorial1998criteria.htm

Hello from the SawMan.

I recently learned of this site and want to know if anyone has experienced fasciculations without other symptoms of ALS. I have visited 2 Neurologists to date, have had EMGs on both sides, plus MRIs of the spine and still don't have an explanation for the fasciculations. It has been 10 months since these symptoms began, but there is still no noticeable loss of strength, diminished breathing capacity, or speech problems - just fasciculations in both legs, both arms, stomach and kidney areas, neck and shoulders. These "twitches" are very intense at times. Anyone experienced anything similar?

welcome saw man

Hi there,

Welcome to worst club with the best members. i am new member too, only speaking for myself on best/worst thing. It's not really a club. think you'll be glad you found this site. good info and humor. Found answers here that Dr. failed to give. There also is a wealth of info. in past threads.

I have no experience w/ your symptoms, mine started w/ numish l. leg and falling. Hear from my Dr. office that symptoms can be very different for each patient. good luck. Hope you find what you are seeking.

Kathy

saying hello!

I have been reading this site for sometime. I am still in the process of being diagnosed. I have my first emg july 27. nervous about it . I have bulbar als symtoms. Your threads have helped me alot thanks.

Hi SawMan. My symptoms started with fasciculations and I had them for more than a year and a half before anything else really started to show up. Then I noticed the weakness starting and the watch strap too big from the atrophy. Fasciculations can be caused by a few other disorders so I wouldn't rush out to get a cemetery plot with a view yet. Hang in there. This ALS is sometimes a waiting game. Sort of like soccer.

Missi in Oklahoma

My father recently passed away with ALS on 6-7-06. He was diagnosed on 4-8-06. He passed very fast. My Uncle, his brother, passed away from ALS 18 months ago. My Grandmother passed from ALS 3 years ago. Her father, my great grandfather, passed away years ago from it, but back then he was diagnosed with muscle deterioration. Her brother, Uncle Bill, passed away years ago from ALS, and now his children Bill Jr. and recently his daughter Patty, 42 passed from ALS 3 months ago.

Needless to say, we have Familial ALS in our family. Now that my father passed, first of all I'm grieving to the point of feeling like walking dead. Next is my own sanity of questioning whether I will get it and will my 3 children get the gene. Then I wonder whether or not I should be tested and IF I do get tested and it's positive, how will that affect me.

Sorry if I am rambling. I am 37 years old, divorced mother of 3 children and I do worry that I will get this.

I am mourning my father, who passed quicker than lightening, and wondering WHY this is happening to us?

Please help me. I feel like I'm losing my sanity. I need support from people who understand and are experiencing similar problems.

This disease sucks and it's recently destroyed my life by taking my father. He raised me. He was the first man I loved and seeing him suffer so badly makes me angry at God. I promised my father I would not be Angry at God, but I guess I broke my promise because "angry" is NOT the feeling that I am experiencing.

I can't take this any longer. Today is 7 weeks since he passed. :-( I'm so depressed. My doctor has put me on anti depressants and heart medication/beta blockers due to my anxiety over this stuff.

HELPPPPPPPPPPPPPPPPPP!