Hello everyone.

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Motomike

New member
Joined
Jul 30, 2023
Messages
2
Reason
PALS
Diagnosis
02/2023
Country
US
State
CA
City
Chula Vista
Hello to everyone. My name is Mike, i have been recently diagnosed with ALS on Feb the 14th. (Happy V-day) i really dont know what to write about that most of us have not already heard. i would never wish any of this on anybody or any living being. any who. im 43 years of age and was a Survey Tech (Field) now i just do office work until i am not able to anymore. Not gonna lie this diagnosis has really thrown my family and i through a financial ,emotional and especially mental storm with no end in sight, as for me i have the added physical struggles that accompany these three letters. i hope all the best to all in this forum and their families. Joy Happiness Love and Light
 
Hi Mike,
I'm so sorry to have to welcome you here. You'll find a lot of good support from other people with ALS and our moderators.
If you have questions, concerns, or just want to vent, you can do it without judgment.
 
Sorry you have to join us but look forward to getting to know you. If you have general questions or concerns general discussion is good. If you want to talk to PALS only the PALS subforum is the place. We have the rollcall thread if you just want to check in The other subforums ( except for the ones for CALS ) are there too. As you read and get to know us you will get a sense of how things work.
 
Welcome. Again, sorry that you have a need to be here. My sentiments match yours exactly. Hello from Texas. Former Oceanside, City of Orange, National City, and San Diego resident here.

May you find all the answers to your needs here. Bless you.
 
Oh Mike - I am also so sorry to welcome you. I am a former CALS. This disease is awful, but the light in all of it is this forum and the people and support you will find.

If you haven’t already, find an ALS Clinic near you and get on their rotation. They provide so much support and knowledge and insights. You will learn more than you ever wanted to, but you will find peace and comfort in those who have gone through this before you and with you.

Prayers for you and your family.
 
Thank you. It's gonna be a challenge. But I hope to find guidance and friendship to help each other. Thanks for reaching out.
 
Hello Mike, like everyone else I want to welcome you though I wish we didn't have to. You'll have lots of questions and we'll all be here to answer them and support you in any way we can.
 
Hi Mike, so sorry, welcome, and I wanted to mention that we are also in San Diego. If you haven't yet connected with the ALS Association here I would recommend it. They have helped us anticipate what was coming at various times over the past 3 years and what we would need in order to manage each stage, and have been very generous with things from their loaner closet. I know people have had differing experiences with different ALSA chapters, but we've found ALSA-SD invaluable. Are you at the ALS Clinic at UCSD? That's another thing we appreciate having locally, they do a good job of coordinating among all the various specialties. Nothing makes it easy, but the more sources of support, the better.
 
Hi Mike,
I was diagnosed 3/14/22 sorry to hear that you have been diagnosed with ALS. It sucks!!!
 
Hi Mike. I was diagnosed on Feb. 17 this year, but the symptoms go back to last summer when I first started having trouble chewing. Things steadily got worse as I lost upper arm strength, had balance issues, started voice slurring, and had a couple of falls. The diagnosis was all over the map. First they thought it was a silent stroke, then someone called it hyperthyroidism and sent me to another hospital that called it MG, Parkinson's, or even Lyme Disease, before the EMG results called it ALS and made it official. Things haven't gotten too much worse since February. I am treating my symptoms with acupuncture, Deanna Protocol, a Chinese herbal medicine for cramps, and will be getting a spray that is supposed to stop my constant drooling soon. I tried radicava, but it made me sick so I stopped after less than a week. I hope to get Relyvrio through the VA, but the logistics for that are difficult. I found this forum last night and am looking forward to meeting and supporting others.
 
Tokyo Tengu, what kind of spray are you getting for excess saliva? I have Atropine drops and just had my first round of Botox injections.
 
Tokyo Tengu, what kind of spray are you getting for excess saliva? I have Atropine drops and just had my first round of Botox injections.
 
Barbi,
There is also a good ALS clinic in Fort Lauderdale (Holy Cross). I also have local doctors that I use and that stay in contact with my team in Miami so I don't have to travel to Miami for everything.
 
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