New and wondering.......

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Ladyinn

Distinguished member
Joined
Apr 7, 2010
Messages
398
Reason
PALS
Diagnosis
11/2009
Country
US
State
South Dakota
City
Custer
Well, I am not only a recently diagnosed ALS patient but new to this site. So, bear with me as I try to figure out how to use this form of communication. I wanted to start a blog but don't know how and posting a thread has taken me better than an hour to figure out how it works!

If anyone can help me figure out the blog thing I sure would appreciate it. :confused::?:
 
Well you have made one achievement for the day, so that is something! Welcome, welcome, though I kniow we all will wish that you did not need to be here.

Existing bloggers will give you best help but I just wanted to say hello and send you love
IRismarie
 
A GIGANTIC South Dakota hug and wave to you! I know that you will have to make a certain number of posts before you can access all of your control panel- [maybe 20?] so you will not be able to private message until then and that may also pertain to your making a blog. I sent you a friend request. Dakotians must stick together and it is REALLY important as there is only the two of us at this point! What is your diagnosed? My Husband is Bulbar Onset, diagnosed in July of 09. I actually lived in Custer and went to school there. Are you from Custer? Do I KNOW you?! Kay Marie
 
I wish I knew what my diagnosis is -- I spent 12-days at Mayo in Rochester in September and October and the diagnosis reads "probable ALS". I have been doctoring for falls, balance issues and changes in speech patterns for better than 2-years. Nobody could tell me anything except "You are losing strength and muscle mass." Or "you have a neuro muscular degenerative disease." DUH! I knew those things that is why I went to see them in the first place.

At the present time I have no use of my left arm (hand works if I can lift it up to the keyboard) and I am losing strength in the right arm. I fall frequently and tire easily. My speech is stilted - especially when tired - and I am set to see a pulmonary specialist on Thursday for a blood gas test at RCRH.
 
IF you want or need more information about the criteria for a diagnosed you can go to the dreaded "Do I have ALS" thread and at the top are many sticky's that give all the criteria. Web has never had ABG's done. I wonder why they are doing that? He has Pulmonary Function Tests done every three to six months and we have done home O2 sats with a oximeter before. He was diagnosed at MeritCare in Fargo by a ALS Neurologist within 2 weeks. They offered us a second opinion with Mayo but we declined. Going through the testing and hearing the diagnosed once was more than enough for us :] His symptoms were initially all Bulbar. His speech is almost gone now but definitely has always been clearer in the morning and deteriorates as the day goes on and he becomes tired.
 
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