Old 05-07-2017, 05:22 PM #1 (permalink)
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Question Does anyone READ this

I have PLS and cant get any help
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Old 05-07-2017, 05:43 PM #2 (permalink)
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Default Re: Does anyone READ this

Hi Steve-

What kind of help are you requiring? This is a great place for answers to questions and practical advice for equipment, etc.

Are you a patient at an ALS or MDA clinic?

Welcome to the forum.
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Old 05-08-2017, 01:11 AM #3 (permalink)
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Default Re: Does anyone READ this

Hi Steve how can we help.

We do read posts and we do respond, tell us a little about yourself.
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Old 05-08-2017, 05:57 PM #4 (permalink)
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Default Re: Does anyone READ this

Steve, your bio says you have diagnosed with PLS. I'm sure it's been a long journey to have been diagnosed with Primary Lateral Sclerosis... being that protocol requires 3 to 5 years of testing, observation and exclusion. Also... from your bio it says you were diagnosed 3 years ago.

As Tillie suggested... maybe you could tell us a little about yourself and your "Journey" as it used to be referred to here.

With a diagnosis of PLS you would be eligible to participate in most ALS Clinics as I go to one myself. And, you being from Islip Long Island and the huge nearby metropolis of New York City I'm sure there are several.

If you are a Veteran, with the right diagnostic code, you are also eligible to some considerable benefits.

What help are you having difficulty finding?

PS There are many informative Threads in this sub-Forum below your first Thread here that may be helpful.

Last edited by Clearwater AL : 05-08-2017 at 06:43 PM Reason: Add PS
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Old 05-14-2017, 03:05 PM #5 (permalink)
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Default Re: Does anyone READ this

I posted here a month ago and got no response

So I thought this was another BS forum
They think I have PLS but donít know ???
I canít get help from local government, media, charities or churches
I canít talk or walk so calling is not an option
I cant get any help setting up TTY software I keep getting the runaround
New York State Worker math
Rent and utilities $1100
Stuuf /bills $ 350
Heath sub ins $200
Drug Ins $ 80
Credit Card bill $500

Normal math == = $2230

New York State Disability Worker math = $820 Ö.. WTF ???


HELP


Quote:
Originally Posted by Clearwater AL View Post
Steve, your bio says you have diagnosed with PLS. I'm sure it's been a long journey to have been diagnosed with Primary Lateral Sclerosis... being that protocol requires 3 to 5 years of testing, observation and exclusion. Also... from your bio it says you were diagnosed 3 years ago.

As Tillie suggested... maybe you could tell us a little about yourself and your "Journey" as it used to be referred to here.

With a diagnosis of PLS you would be eligible to participate in most ALS Clinics as I go to one myself. And, you being from Islip Long Island and the huge nearby metropolis of New York City I'm sure there are several.

If you are a Veteran, with the right diagnostic code, you are also eligible to some considerable benefits.

What help are you having difficulty finding?

PS There are many informative Threads in this sub-Forum below your first Thread here that may be helpful.
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Old 05-14-2017, 04:37 PM #6 (permalink)
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Default Re: Does anyone READ this

Steve- I'm not sure why you would say no one responded. You received welcome and response from members. Is there a specific question you had that you are hoping members can provide assistance with?
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Old 05-14-2017, 07:00 PM #7 (permalink)
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Default Re: Does anyone READ this

Steve, as you wrote...

"They think I have PLS but don’t know ???"

I'm sorry you are in this limbo but... until you get a confirmed diagnosis and/or the diagnostic code for PLS from your doctor, like so many others that have posted Threads similar to yours, help as you are in need of will be extremely difficult to receive under the umbrella of Primary Lateral Sclerosis.

You are not alone... many and numerous Threads (posts) are within the history of this Forum so common to yours. Maybe during the next Neurologist appointment you have you could share your plight, as you have with us, ask him for his/her opinion.

Again, you're not alone in your situation. we have heard (read) your plight many many times here. Sorry, the ball is in your Neuros court. Talk to him/her.

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Old 05-15-2017, 03:04 AM #8 (permalink)
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Default Re: Does anyone READ this

Steve I'm so sorry for the situation you are in.

We did respond, you only posted a week ago, and we are here.

We are not sure what help you are hoping we can provide, but we will do whatever we can. Are you living alone?
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Old 05-15-2017, 01:07 PM #9 (permalink)
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Default Re: Does anyone READ this

Tillie, from Steve's list I really can't see what help any of us here could assist him with short of financial donations... which doesn't go over well in this Forum. As I wrote above, he is in that "Limbo" we have read in Threads so many times. Without a confirmed diagnosis... there is so little he is eligible for in government benefits and or financial assistance.

But...his bio indicates he was diagnosed in 10/2014. (?)

Steve, as Tillie wrote above... maybe you could expand on any questions you may have other than the list you have posted above previously. What tests (like Babinski and Hoffman) have you had? What meds are you currently taking related to MND? You mentioned you thought this may be just another BS forum... what other forums did you find unresponsive to your questions?

Again, I too feel bad for the situation you are in.

Last edited by Clearwater AL : 05-15-2017 at 01:25 PM
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