new dx

[tabney]

Hello everyone. I posted my dx on 2/27. I saw my neuro again today as I felt things were progressing rapidly. I felt much weaker and therefore wanted to meet with him for a follow up. To make a long story short, I have a new dx of ALS. I am not shocked and then again, I am not sure it has really sunk in yet.

[hboyajian]

Hi Tabney, This is tough news that your diagnosis has been changed. It sounds like your illness is progressing quickly, and I sincerely hope you are able to access the support you need. Are you connected with an ALS clinic or the MDA? ALso, has your neurologist suggested that you get a second opinion? It is important with an illness like this, for which there is no definitive test, to have better assurance of the diagnosis by getting at least one other doctor to confirm it, preferably at an ALS clinic. You want to have people who really know what they are talking about and who can get you the support services, equipment , referrals, etc.

[tabney]

I begin the clinic in two weeks. I feel like you in that a definite diagnosis is difficult with this disease. However, with the quick progression, I accept this and am ready to fight with all my energy. "Get busy living....or get busy dying" I choose living! I am connected with some wonderful people in the ALS community. This message board is a
God send for so many.....The local ALS chapter has been wonderful. I am blessed. Thanks for the reply and kind thoughts.

Toni:-D

[hboyajian]

I am so glad to hear that you are scheduled at an ALS clinic and are already connected with organizations that will offer you resources and assistance. It sounds like you have the will to live your life fully no matter what it brings you. I hope that you also have family and friends to support you through this.

[stevef]

i am so sorry they changed your dx to als. that is the scary thing about als is the fact it can hide its ugly head for a little amount of time and then progress so rapidly. I will keep you in my thoughts and prays as i do everyone in here that some day they will find a cure or at least something to prolong life and slow down the progress of it.

[CindyM]

Hi Toni- this latest news is awful! I like your attitude, though. In the end, a good attitude seems to be one of the few things we can actually do that makes a difference! All my best, Cindy

[tabney]

To everyone on this board. You are right Cindy, attitude is everything. My Father passed away from Cancer in 2004. On the day of his diagnosis, he was laughing and joking. He told us we could all sit around thinking about the fact he had cancer, or, we could all go on with our lives, spend as much time together as possible, and deal with what happens as it happens. He was so upbeat and strong. I never forgot that. I share this as an example of where I get my attitude and with the hope that someone else will gain strength from a positive attitude. Thanks to everyone who shares their stories, progress, dx, and support. We are all in this fight together and we will one day find a cure....until then, keep fighting!:mrgreen:

[CindyM]

I agree we can learn a lot from our elders. I deal with my illness the way my Mom taught me to deal with her Alzheimer's. She learned all she could about her DX, made plans for when she no longer would be self-sufficient, and then proceeded to enjoy herself. there is nothing wrong with accepting the things we cannot change! Cindy

[shellshell]

I look so forward to the day that I can get past the anger and hurt I feel about my dad being recently diagnosed with ALS and move on to enjoying every single minute I have with him. I am struggling with that right now. I don't really know how to get past it. There isn't a day that goes by that I don't cry about it. This forum has help me to deal with a lot, it's my private time to deal with ALS in my own way, a way that nothing else has been able to help me with. I only hope that I will soon get to the point of looking forward to the future what ever it may be with my dad's diagnoses rather than dreading it.

God Bless,
Michelle

[godsgirltx]

Michelle,

I understand where you are. My ex-husband just was diagnosed in February with this horrible disease. We have a 10 year old son who has not been told yet. I am in that limbo stage . . . I can't really show any emotion about this since my son doesn't know yet, and it's very hard to move forward until it's all out in the open. However, on the other hand, I dread him being told because I'm having a huge fear of how he will respond to this news.

On a positive note though . . . I am a huge believer that the Lord knows what He is doing. I have found that in praying for peace (not understanding -- I don't know that we'll ever understand), I have been given that for today. I have to pray it every single day though because I wake up thinking "Was that a dream?" . . . and once I figure out that it's not, I have to ask for peace again.

I believe that this disease has many seasons of many emotions for everyone involved -- yes, even for the ex-wife :) I grieve for my son.

I am praying right now that the Lord will give everyone on this forum the peace for today to enjoy the day as things are right now! Thank you, Lord!

[patricia1]

where do you people come up with these crasy names you have pat:roll:

[shellshell]

My nephews call me ShellShell so that is where my crazy name comes from.

Michelle:grin:

[shellshell]

What a wonderful message that was godsgirltx, I so appreciate that. I must agree with you on the statement of the season's. Boy each day seems like a different season at times...

I live about two miles from my parents (who have been married for 37 years) and I see them every single day so this has been so very difficult for me to deal with; however, I try to live my life never regreting ANYTHING so even if I am so very tired at the end of the day and my dad needs something I jump without question! My husband and I have been married for 13 years (we are both 34) and can't have children so I guess other than my husband my parents are my "children" and I spend all of my time with them...Thank you so much for the warm thoughts and helping to put things in perspective for me.

Hugs!
Michelle

[Al]

A nickle says god's girl tx is a young lady from Texas who is slightly religeous. I too do try to figure out where some of the names come from or mean.
AL.

[Jamiet]

sorry to hear of this...we're here for you.

[CindyM]

tabney-are you still in limbo? After all the research and learning about what your symptoms cpuld mean, was the Dx almost antilimatic Cindy?