Had my Second Opinion Today

[adamfwilson]

Hi All,

I'm a recent member to the ALS family. I was officially diagnosed in April by my doctors in Cincinnati. (Any other Cincy members on here!?!). Anyway, I had my second opinion today at Cleveland Clinic which confirmed the diagnosis.

We were fully expecting the diagnosis as I have pretty clear symptoms, but it still sucks to hear it!

We had been waiting for this to really start planning out what needs to happen next -- so that begins tomorrow!

There's no point to this post, except I wanted to tell people that know what it is like. I have many great people in my life --- but they don't know exactly what it is like...you guys do!

Adam

 

[nebrhahe53]

I'm so sorry for you. We do know, and feel free to come here to vent, cry, or share knowledge. Be very careful not to get sick or be near sick people- this will speed your progression as will losing weight or falling and hurting yourself. Be very careful if you need to go into a hospital, drs training for most patients actually is often the opposite to what we need.

 

[Jeanau]

Hi Adam...I'm sorry that your diagnosis was confirmed, but I'm glad you found this group. We may be a various stages of ALS...but we're all in it together!

 

[Atsugi]

Hi, Adam. Sorry to see you here, but you are definitely welcome to be here, ask questions, vent, rant, or simply share.

 

[Mtzu]

Hi Adam,

Sorry your second came out that way. I know what you mean by expecting it. I'm waiting on my second and expecting the same. The people, knowledge and compassion here is amazing. It's been a big help. I hope, for both of us, to see you around here for a very long time.

Michael

 

[Green Queen]

G'day Adam,
I find a lot of comfort in this forum, and I hope as your journey continues you do too.
God bless, Janelle x

 

[LifeEnthusiast]

Hi Adam, Sorry to be welcoming you here. I'm extremely new here myself but have already found this forum and its people has helped me considerably and allowed me to feel less alone. Looking forward to getting to know you.

 

[Nikki J]

Sorry much as you know and expect this there is always the tiny corner of your mind that hopes this doctor is going to say something different.

 

[KatB]

Hi Adam,
I'm newly diagnosed & new to ALS forum as well.
I'm formerly from the Cincy area, my family is still there. I was just there for two weeks visiting my kids & family for the first time since I told them of my diagnosis. Lots of tears, grieving, hugging, loving & laughing.
One of the eye openers for me was, I had no idea how many people love me, & care about my health & well being.
The cards, letters, emails, gifts, phone calls & visits have been inspiring, exhilarating, heartwarming & overwhelming.
Which has helped me to know that where I am in my life is where I am supposed to be. It has helped to deflate the fear in my soul & lift up my Spirit to new heights.
Welcome!

 

[hjlindley]

Welcome to the club no one wants to be a member of. I have been wrestling With this beast for about seven years. I can talk, breathe, and swallow. I am in a power chair full-time and need help with darn near everything. Good luck! Feel free to ask us anything, we are all here for you.
Hollister

 

[MaxEidswick]

>------

like all the others, sorry to meet you here but welcome!

The next weeks, months will be an emotional roller coaster. Try to go with the flow, expect fear, anger, bitterness, and a new awareness of life. I have found that being active here on these forums has helped me in way I cannot explain, but you will see.

before trying miracle cures, etc., ask here, go to alsuntangled dot com.

Lastly, anxiety can be debilitating so beware.

Lastly, lastly DON'T FALL, take vitamins, keep your calorie intake up, and stay away from sick people, especially w/ respiratory problems.

Kind regards and warm welcome,
------

> I do know it is healthier to be thankful for what still works than to resent what doesn't (easier said than done )

remember the rules:
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#1 don't fall
#2 don't hang around sick people, at 1st sign of respiratory issue go to doc
#3 conserve energy, rest, never push it, try to relax
#4 stay warm
#5 take vitamins
#6 power off pwc when not driving and Don't ram wheelchair into immovable objects

ALS is about living, not dying!
-----
ok well, we take what we get and be glad for what we have
------
If you have not yet, go to youtube and search "ALS ABC" and watch all 3. I sent those to friends and family, too.




Max - Tuesday, May 19, 2015 9:27:04 AM

ALS sucks, but It Is What It Is ... and someone else has it worse so I'll try not to complain today!
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013


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[affected]

So sorry to welcome you, at least now you can start planning and you have a whole new family xx