Old 02-14-2018, 05:26 PM #1 (permalink)
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Question I still don't really believe this diagnosis...

(Still trying to learn how to move around this site, so I hope my comments are in the correct forum.)

I want to say Hello and how much I appreciate the depth of knowledge and the forthrightness that I read posted here. My diagnosis was last October, 2017, after spending about 18 months chasing down causes of symptoms. I may still be in shock and/or denial; I don't know anymore.

My diagnosis was confirmed by three different neurologists, innumerable spinal mri's, brain mri's, breathing and swallowing tests, blood tests and emg's beyond tolerance. I was sure that eventually someone would identify a different, treatable problem. Still waiting for that, even if it is futile waiting. I will be undergoing another full-on evaluation at the ALS Clinic at Augusta Medical College, Augusta, Georgia, in March.

Symptoms currently are no movement in right foot, atrophy of right leg, coughing and choking, aspirational pneumonia episode, and profound weakness. But still...

I guess I'm wondering if this disbelief makes any sense, and how in the world can I know what to expect from now on?
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Old 02-14-2018, 05:50 PM #2 (permalink)
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Default Re: I still don't really believe this diagnosis...

Hi Outlander, you are in the right place. Very sorry to hear about your dx, and we will support you however we can.

If your diagnosis has been supported by 3 neuros with no caveats, it is unlikely that Augusta will differ, but you certainly want to find a clinic that can support equipment needs, etc. so if Augusta is in range for you, it's worth going there to check them out.

Still, it looks like you are a lot closer to Emory? So if the trip is going to be arduous, not sure it's worthwhile. I would never discourage a 4th opinion if it will help you accept and plan, but if Emory was one of the 3 others, I would have doubts on that score, and likely the answer to "does disbelief make any sense" would be "it might be time to work on acceptance."

As to what to expect, the more you read, the more you will know, though of course you have gathered that everyone is a shade different. Perhaps most important to internalize are keys like don't fall, get equipment before you need it, get legal documents in place, be ahead of the feeding tube curve if you plan to be around for a while, etc. -- in short, get stuff done and then spend time living your life, being social, pursuing hobbies even if in another form, etc.

Best,
Laurie
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Old 02-14-2018, 06:24 PM #3 (permalink)
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Default Re: I still don't really believe this diagnosis...

Hi Outlander,
Itís so hard to get bad news and understandable why you would want to look for any shred of evidence that the news might not be accurate. Anyway, this forum is a great place for help, support, information, and even humor. So sorry to have to welcome you. I would second Laurieís advice.
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Old 02-14-2018, 06:29 PM #4 (permalink)
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Default Re: I still don't really believe this diagnosis...

Thank you so much for replying. Emory is actually closer to my home, but we are looking at moving into east Georgia which would be much closer to relative and other support friends. We had just downsized to a smaller home only a few years ago, but in looking at what might be needed, it is actually not a house that is amenable to any kind of disabled person. If, when, we relocate, Augusta will be much more convenient.

I've been trying to focus on the things you mentioned, but it is so depressing to realize that my "golden years" (I'm 71), might be less than golden. Thanks again for replying.
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Old 02-14-2018, 08:00 PM #5 (permalink)
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Default Re: I still don't really believe this diagnosis...

Hi Outlander,

I'm so very sorry about your dx. This is a wonderful support group; very informative and kind.

J
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Old 02-14-2018, 08:37 PM #6 (permalink)
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Default Re: I still don't really believe this diagnosis...

Denial. Not just a river in Africa, it's also my happy place! What you are experiencing is the fact you have this devastating diagnosis, it has a name, but you are still the person you were in September. I tend to acknowledge I have ALS only when it prevents me from doing something. When it doesn't, life tends to drag you back into the land of the living. Looking at death is a lot like looking at the sun. You can only look for so long before it will damage you. I am 3 1/2 years post diagnosis, I can still walk, though not as far, so I'm using a power chair more now. I can still do woodcarving in oak. Breathing is an issue as is swallowing. I am a slow progresser. This allows me to ignore ALS in most things I do. I know bad things are in my future, but until then I chose to live as fully as I can. Between naps. A little denial is a good thing. It's what allows you to keep getting up and living life to the fullest possible.

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Old 02-14-2018, 09:35 PM #7 (permalink)
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Default Re: I still don't really believe this diagnosis...

Sorry you find yourself here Outlander - providing denial does not prevent you from taking anticipatory steps to stay ahead, it's a great place to be!

You will find lots of support and a kind of family here.
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Old 02-14-2018, 09:55 PM #8 (permalink)
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Default Re: I still don't really believe this diagnosis...

You have given me insight into "behavior" that will work out in as positive a manner as possible. Thanks for the right words for me, right now.
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Old 02-15-2018, 06:45 AM #9 (permalink)
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Default Re: I still don't really believe this diagnosis...

Don't feel strange for seeking another opinion. I went to three ALS centers in Florida and then flew to Johns Hopkins. I'm sorry you're here. I'm sorry I'm here. Everyone reacts differently.

I'm really glad you have family to help. That will mean the most. I hope your progression is slow and your life is filled with good things.
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Old 02-15-2018, 08:05 AM #10 (permalink)
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Default Re: I still don't really believe this diagnosis...

Hi Outlander, I'm very sorry about your diagnosis. I think denial is a really common reaction. In a few weeks it will be the one year anniversary of my diagnosis, and I still sometimes feel like maybe it's somehow a mistake. Hugs to you.
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Old 02-15-2018, 05:24 PM #11 (permalink)
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Default Re: I still don't really believe this diagnosis...

I know, right! This just can't be real; but it is apparently.
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Old 02-15-2018, 08:06 PM #12 (permalink)
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Default Re: I still don't really believe this diagnosis...

Denial kept me strong for the first 3 years....then I woke up one morning and realized that I was the ALS(bulbar) poster boy, now it defines every aspect of my existence.
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Old 02-16-2018, 06:28 AM #13 (permalink)
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Default Re: I still don't really believe this diagnosis...

Welcome, go easy on yourself and post often to get to know what is going on,
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Old 02-17-2018, 10:08 AM #14 (permalink)
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Default Re: I still don't really believe this diagnosis...

Quote:
Originally Posted by Vincent View Post
Denial. Not just a river in Africa, it's also my happy place! What you are experiencing is the fact you have this devastating diagnosis, it has a name, but you are still the person you were in September. I tend to acknowledge I have ALS only when it prevents me from doing something. When it doesn't, life tends to drag you back into the land of the living. Looking at death is a lot like looking at the sun. You can only look for so long before it will damage you. I am 3 1/2 years post diagnosis, I can still walk, though not as far, so I'm using a power chair more now. I can still do woodcarving in oak. Breathing is an issue as is swallowing. I am a slow progresser. This allows me to ignore ALS in most things I do. I know bad things are in my future, but until then I chose to live as fully as I can. Between naps. A little denial is a good thing. It's what allows you to keep getting up and living life to the fullest possible.

Vincent
This was really helpful to me. Thank you.
Julie
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Old 02-17-2018, 10:25 AM #15 (permalink)
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Default Re: I still don't really believe this diagnosis...

My daughter lost a good male friend when she was in college. He had a very aggressive form of cancer. Like all of us mortal beings he was faced with the reality of death but in more immediate circumstance. His response to those that talked of his passing was: "I am not dying I am living". This healthy response has been an inspiration for me as a CALS for my wife. She is living and I am glad for every moment.
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