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ALSDestreza

New member
Joined
Dec 26, 2017
Messages
4
Reason
PALS
Diagnosis
12/2017
Country
US
State
CA
City
San Mateo
Hi folks,
I was diagnosed by a neurologist 12/2017 and go to see a second neurologist on 01/2018 who I'm told is an ALS expert. I'm in the "scared out of my mind" phase. I am looking for some sort of 'guidance" if such a thing exists. I was sort of horrified at how the first doc kind of left it as a "see ya later, sir." and really didn't provide any sort of next steps.

So I am here to say hello and hopefully discuss some things about diet and therapies that are helping us live better - longer. I know what's at the end but at 52 years old I don't believe I'm ready to just lay down quietly and die.8)
 
Sorry to welcome you here. This is an outstanding resource for info and support.

Glad to hear you are getting a second opinion. I am hoping this person is at an ALS clinic? It sounds like you are fortunate enough to be able to see them quite quickly. If it's at an ALS clinic, it's likely you will be seeing a few people who will help you assess your immediate needs, and provide a framework for accessing the proper care and equipment.

With regards to "guidance". There are a fair number of pinned posts at the top of the subforums that can maybe provide you with info about what to start thinking about. If you have any specific questions, feel free to post them. You will find that the folks here chip in with advice and info- there's lots of experience here to tap. It might be a good idea to post your diagnostic experience or what your primary symptoms are in order to get the ball rolling. It can be hard to know where to start sometimes.

Once again, welcome to the forum- sorry for the reason you are here.

Fiona
 
Welcome, San Mateo, while sorry you are here. For the vast majority of the life you will have with this disease, there are ways to live better and longer. If you search on previous threads, you will see things like nutrition, hydration, range of motion exercise, respiratory support when you need it, a good bed, the right mobility devices, end of life planning, and staying with someone/something that makes you happy. And never a need to be quiet here!:)

Best,
Laurie
 
Thanks for the greetings! The second doc is at an ALS research center in San Francisco so I'm hoping for the best.

I will definitely be hunting through this site for answers! Sorry to have met you...glad I did.:D
 
I would add make sure you take all your records, especially the ones your doctor used to make the diagnosis. They will want to repeat the EMG and will probably add more testing. If your records are coming directly from your doctor's office, call the ALS Center and make sure they received them. I took the MRI of my brain and spine CDs with me when I went to Mayo. They still wanted to repeat the brain MRI because mine was done without contrast.

Make a list of your concerns and symptoms and make sure someone with good ears and a note pad is with you to take notes.

Sometimes reading all the stickies can be overwhelming as can searching all the previous threads for answers. If you have specific questions, please post them so we can help. I know how scary this can be but getting the right treatment and the right equipment early on will help.
 
Hi there, Kim , Laurie, and Fiona are in their selves a wealth of information, and like they say, most others here on the forum will chip in with their tricks or info they have gathered living with this disease. Anything you have questions on don't be afraid to ask, you will get multiple answers and opinions, all good.
I have a very good neurologist who is head of my ALS clinic but I found he did not tell me too much to start with, it was more like let's wait and see how things go, that was when I was seeing him every two weeks, now that I see him every six month at all makes sense. This disease can go in many different directions and at different rates so why spend time talking about things that just doesn't matter. As time goes on you will learn to live with it, don't sweat the small stuff, when you wake in the morning say to your self this will be a good day, and most of them will be. It will be an interesting journey, and all you can do is live with it and control it as much as you can. Good luck friend and don't be afraid to ask.
Al
 
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