Another newly diagnosed

KevinM

Active member
Joined
Mar 30, 2019
Messages
55
Reason
PALS
Diagnosis
06/2019
Country
US
State
FL
Unfortunately, though not unexpectedly, Dr. Pulley at Jacksonville Shands today confirmed my ALS diagnosis. I have known for some time this was coming, but as everyone knows, the actual confirmation is nothing less than shocking. My poor wife and daughter had held out hope, and as much as I had tried to prepare them, they were understandably inconsolable. The toughest day of my life, and theirs. This is a big gross bag of sh—.

When I last posted after my exam with Pulley on April 25th, he had not made the call until he saw me again for evidence of progression. At that time he noted slight clinical weakness in my right arm and left thumb, and today noted progression of weakness in those areas as well as slight ankle weakness as well, in addition to atrophy of my shoulder muscles and the muscles in my left hand. Perhaps most horrifying, he believes that I have a relatively fast progression because of the change in only a month and a half. My time is limited, folks, and I’m terrified.

If there is a “positive” side, I still do not have any obvious impairment at this moment in time. I can still walk (still can do heel to toe walking with no issue), have full use of my arms and hands (albeit weaker and with a lot of shakiness and tremors after exertion) and am able to function normally for the time being. I expect that to change fairly rapidly over the next few months though. There is no bulbar involvement at all, as I am LMN dominant.

Enough for now. I am drinking a cold beer, just swallowed a Xanax, and am trying not to throw up in my mouth. Thanks to all of you, the bravest people on earth, for being here. I hope I handle the coming months with as much grace and courage as the other PALs here I have come to respect and learn from over the past few months. Strength to us all. Kevin
 

blitzc

Distinguished member
Joined
Apr 20, 2018
Messages
163
Reason
PALS
Diagnosis
01/2018
Country
US
State
OH
Cheers Kevin! I will have a drink in your honor to welcome you to a wonderful place for information, care, companionship and just a great place to Rant! Everyone here will help you on this journey!
Take every blessing each moment gives you! Come here anytime you need it!!!!

Cathy
 

KevinM

Active member
Joined
Mar 30, 2019
Messages
55
Reason
PALS
Diagnosis
06/2019
Country
US
State
FL
Cheers Kevin! I will have a drink in your honor to welcome you to a wonderful place for information, care, companionship and just a great place to Rant! Everyone here will help you on this journey!
Take every blessing each moment gives you! Come here anytime you need it!!!!

Cathy
Thanks Cathy. You have been one of my inspirations as I have become familiar with many of the PALS that post regularly. Lots of hugs to you and yours. K
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
2,336
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
Sorry to have to welcome you here Kevin. Keep doing fun things for as long as you can and focus on living in the moment while also making some realistic long term plans. We’ll support you as best we can.

Oh, and regarding progression, it can be really hard to assess. I thought mine was super fast in the beginning but I had also lost about 10# while awaiting a diagnosis, just from stress and trying to eat healthier. Once I regained that weight and then some, my progression slowed way down.

None of us knows how much time we have. Gotta make hay while the sun shines. 😄🎼
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
2,336
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
Was your EMG also consistent with ALS? I recall from your previous thread that you said it was “atypical”?
 

KevinM

Active member
Joined
Mar 30, 2019
Messages
55
Reason
PALS
Diagnosis
06/2019
Country
US
State
FL
Was your EMG also consistent with ALS? I recall from your previous thread that you said it was “atypical”?
Hi Karen. Thanks for your comments about progression. I too have lost about 7 pounds since my first visit, but I had contracted salonella poisoning the first two weeks of May and dropped five pounds very quickly. Trying to gain it back, but the extreme fasciculation are demanding so much energy I’m having to eat much more. Still a great appetite, though.

Pulley did not feel it was necessary to put me through another painful EMG. His last one created such a hematoma in my right triceps it turned my whole arm purple and swelled to twice it’s size. His clinical exam to confirm additional weakness and atrophy was enough for him to call it. He gave us a letter to give to my employee and SSDI that said the patient has ALS and is completely and permanently disabled, and started my on rizulole. He told me and my wife in no uncertain terms I have ALS. Pretty definitive. K
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
2,336
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
Sorry for the news.
 

sassy

Active member
Joined
Apr 22, 2018
Messages
61
Reason
CALS
Diagnosis
02/2018
Country
us
State
Massachusetts
Thinking of you and your family. Wishing you the slowest progression and lots of wonderful days ahead.
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,518
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
A sad welcome, Kevin. As Karen says, many PALS have seemingly fast progression at the beginning, that levels off a bit before the next phase.

Best,
Laurie
 

lisa g

Active member
Joined
Apr 17, 2019
Messages
67
Reason
PALS
Diagnosis
04/2019
Country
US
State
Florida
So sad to welcome you here, but your in the right place. As I have you'll gain a wealth of knowledge from the people here. Keep your chin up.
 

KevinM

Active member
Joined
Mar 30, 2019
Messages
55
Reason
PALS
Diagnosis
06/2019
Country
US
State
FL
A sad welcome, Kevin. As Karen says, many PALS have seemingly fast progression at the beginning, that levels off a bit before the next phase.

Best,
Laurie
Thanks Laurie. Your vast knowledge and compassion are so appreciated. K
 

Chuckdobro

Member
Joined
Apr 29, 2019
Messages
28
Reason
PALS
Diagnosis
02/2019
Country
US
State
Ohio
Kevin, please don't let als be your life. Make it a part of your life. You have been delt a crappy card of life, as we all have, keep your head up and keep going! I switched from beer to vodka and tonic. The quinine in the tonic water helps alleviate muscle cramps!

Best wishes
Chuck
 

KevinM

Active member
Joined
Mar 30, 2019
Messages
55
Reason
PALS
Diagnosis
06/2019
Country
US
State
FL
Kevin, please don't let als be your life. Make it a part of your life. You have been delt a crappy card of life, as we all have, keep your head up and keep going! I switched from beer to vodka and tonic. The quinine in the tonic water helps alleviate muscle cramps!

Best wishes
Chuck
Thanks so much Chuck. I had always thought of myself as a pretty brave guy, but I’m f—-ing scared to death. Hopefully I can get to a place of some acceptance as it sounds like you have done.

And ditto on the tonic water...I’ve been drinking it for a couple of months, although my issue is more the 24/7 fasciculations than cramps. So far, only a Benzos mid afternoon calms those down for a couple of hours. Trying all the tips-cbd oil, magnesium, coconut oil massages, etc. only minor relief. It’s more mental than painful, as it is a constant reminder of the evil lurking inside. K
 

lisa g

Active member
Joined
Apr 17, 2019
Messages
67
Reason
PALS
Diagnosis
04/2019
Country
US
State
Florida
Kevin,
Your not alone. We're newbies to this monster so we have a lot of navigating to learn. Don't let the monster consume your thoughts it will make you crazy. Enjoy life around you. Your not the only one that is f***ing scared.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,578
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
A few thoughts. A significant illness especially with weight loss will exacerbate symptoms. I had been very ill ( pneumonia) before my last clinic. Although my breathing was fine and I was recovered they felt some of the strength changes could be atrributed to that and might reverse a little. I can’t tell for sure but I wouldn’t be surprised if my next visit looks like a plateau (improvement from recovery balanced with progression from disease)

The first summer I had this things seemed to be progressing alarmingly and I expected a wheelchair by Thanksgiving. That changed after starting riluzole and the wheelchair has yet to be recommended or requested by me.

Riluzole also knocked out twitches for quite a long time. This happens for some PALS. I do twitch now but not badly.

It takes a couple of weeks usually to get over the shock but as you can see her many PALS live pretty full lives. The world doesn’t stop with a diagnosis nor should you

If your previous emg was not diagnostic I am really surprised Dr Pulley made a diagnosis without another one. My clinic is extremely strict about meeting the criteria from what I have been told
 
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