Mda

[Judith]

I have been dx with PLS. I emailed the MDA to register, so I could get funding assistance for a speech generating device. They told me that PLS was not on their neuromuscular list of diseases and they won't assist in funding.
Has anyone else had that response?
Judith

[olly]

hi judith,im not sure but i think they may be wrong. pls is a mnd and have some disability needs similar to als/pma. i do know that the alsa take on pls patients so i would get intouch with them maybe they can help you.

[olly]

i have been made aware that some pls'ers in the pls friends forum are registered with the mda and get help with things they need. i suspect you have been misinformed.
ask your doc/neuro if they will register you,i know they can do this when you are diagnosed.
caroline

[Geo]

Your Doctor needs to register you . Then they'll be nice . I got a Quad Cane a wheel chair and a walker from them . and im thinking once a month you go to your doc. and they do a Clinic free .The MDA gal will come in with the doc. or after your check up and tell you what they do for you ,of course that was back in my old home town . i have moved since and have found the Gals at MDA are great but the doctors are terrible . i quit going to that Doc. and told the MDA i wont go back ,they appologized and said if they could help in any way just call . I would get an appointmant with a MDA doc. or call MDA and ask who they use. Geo

[Walter]

Judith, I have PLS and the MDA told me the same thing.

[CindyM]

Maybe the rules are different in CA? I'd try getting either the doc or the ALS folks to register you and see how that goes. Don't give up!

[Lorie]

This is off the MDA site. From what I have read in different areas PLS is an ALS Variation.
I would definetly persue MDA about this.


When It's 'Almost ALS,'
Will the Disease Progress?

by Margaret Wahl

The hallmark of ALS is the degeneration of two kinds of motor neurons — upper, which are in the brain, and lower, which are in the anterior horn (front section) of the spinal cord and in the brainstem. These two sets of motor neurons work together to drive movement and locomotion, but have separate, important functions as well.

Sometimes people come to a neuromuscular disease clinic who have only upper motor neuron (UMN) or only lower motor neuron (LMN) involvement. There’s usually an important question on everyone’s mind: Is this disorder likely to progress to ALS, or not?

The answer, unfortunately, usually requires waiting a few years to find out.

Stop, Go Or Modify


LMNs provide “go” signals directly to muscles. When they’re lost, muscles become weak and eventually unable to contract effectively, although they may twitch (fasciculate) involuntarily.

UMNs are different. They don’t go directly to muscles; they go to the LMNs, and they refine muscle movement from the raw “go” signal of these spinal nerve cells into the highly specialized movements needed for walking, running, typing, talking and hundreds of other motor activities. Without UMN control, muscles become tight (spastic) as well as weak, and reflexes may be accentuated. Muscles generally don’t atrophy or fasciculate (twitch) if only UMN loss occurs.

After Five Years, ALS Diagnosis Unlikely If Only UMNs Involved

Michael Singer at the University of Texas Southwestern Medical Center in Dallas, and colleagues, reviewed in the March issue of Muscle & Nerve the likely outcomes for people with only UMN damage. Gil Wolfe, co-director of the MDA clinic at UT Southwestern, was also an author.

“For patients with exclusive upper motor neuron symptoms acquired in middle age or later, the two main diseases to consider are ALS and primary lateral sclerosis,” the review says. “ALS [with UMN and LMN symptoms] is more common, and is usually the ultimate diagnosis.” However, they refer to studies that suggest that if LMN symptoms haven’t appeared after three years (one study) or five years (another study), it’s likely they won’t occur.

A third study found that when people developed LMN loss after having only UMN deficits, 77 percent did so within four years of symptom onset.

Better Prognosis, Slower Progression

The prognosis in these UMN-only cases, which are referred to as “primary lateral sclerosis” (PLS), is better than it is for ALS, and the progression of the disease is generally slow.

Drugs that combat spasticity, such as baclofen (Lioresal), are often prescribed, with a variety of supportive care measures.

“As difficult as it is to wait, the benefit of PLS as the diagnosis is undeniable,” Singer says. “Studies of PLS patients show them surviving nearly eight years or longer after diagnosis. In cases where deaths were discussed in medical journals, survival ranged from one to 15 years, and notably, none of the deaths were directly attributable to PLS.”

Wolfe concurs. “Compared to ALS, patients with PLS display more muscle stiffness, but they have less weakness and less respiratory compromise, and their prognosis as a result is much more favorable. The dilemma is separating PLS from ALS early on in the disease course so that we can provide some degree of reassurance to patients.

“This can be challenging, but if several years pass without clinical evidence of LMN involvement, one can be reasonably confident in making the diagnosis of PLS. Even having a UMN-predominant presentation of ALS casts a more favorable light on the situation.”

[olly]

thankyou for a great article. i have been ill 8yrs, mostly umn but slight lmn in my left leg,that is loss of muscle tone/contraction. my neuro still wont dx, says mri 2yrs ago was normal and all other tests to rule out all else normal.they/doctors/hospital dont seem to care, just hello/ok bye/out the door, its like they cant do much to help so they cant be bothered. i ran into a nasty neuro 2wks ago.
i am on disability,unless you have a terminal or degenerative desease they check on you every 6mths,but ive never heard from them. also im waiting for a new home as im in a 2storey house and need ground floor one, when i phoned my local disability needs council office about something they said according to there records im going to need future addaptions in my new home but could not tell me anything else.this is based on info from my medical records,so i dont know whats going on and know one will tell me.
in pure pls there should me no lmn involvement,if there is some but not enough for dx of als,then its described as umn dominant als, its easy enough to understand so i cant understand why they wont dx.
how is tim doing, as his pneumonia cleared yet? i do hope so.
take care
caroline

[Lorie]

I hope things get better for you. Lets stay on that MDA thing. I have some contacts I will talk to, to see what I can find out. This is very unfair. I hope the home adjustments work out. We will do what ever we can to make progress. No sitting on the sidelines.
Hang in there, lets see what we can do.

Tim is doing well. He can talk and eat up a storm. Thank goodness. He is such an inspiration in my Life, in return gives me the have to do from my heart for ALS.

I am trying to get his laptop that me and my husband bought for him a while back, set up with via voice and teach him how to use it. So he can use the computer. He can come on here and be a great voice. He can give people first hand what he has endured. And spread his great uplifting spirit.

Thanks for caring, Caroline. We care about you to! Lorie:-D

[olly]

that is great news to hear tim is doing better, i am so happy for you. it would be brilliant if he could come onto the forum,everyone would love to hear from him personally. i do hope that works out.
judith wanted to sign up with the mda not me as i have not got definate dx yet so i cant till then but thankyou for offering to help.
im ok, get bad/good days, just trying to build myself up after all the wieght loss due to jaw/chewing problems, but its hard when you dont have much of an appetite.
i have to say i think you are a great asset and inspiration to this forum and your fight against als etc. and when ever you talk about tim i can feel the love and admiration you have for him, tell him he is one hell of a lucky guy.
god bless
caroline

[xina]

you have been misinformed. my neurologist gave me the MDA paperwork and i am registered with them. my dx is PLS. they referred me to a local ALS clinic (the one my neurologist works with is in NYC and too far away for basic checkups). i would call back and ask to speak to someone else until you get someone who knows what they are talking about and if that doesn't work - get your doctor involved.

[Geo]

Getting Hooked up with MDA is up to your Doctor ,if he or she recommends you to them ,there will be no problem .But if he or she doesnt they wont be touchy feely . I was fortunate to have at that time a very good Neurologist ,who was a very caring man . He was loved and looked up to by all , i think his wife has ALS and he was trying to be a doc and raise his kids and all . Im geussing this is why he was so understanding . toward me, plus we grew up knowing each other very very many years ago . The main thing is they consider is PLS is ALS in its early forms but as time goes on the the EMGs come out good you are slowly taken off Death Row and placed in LIMBO .Just Thank God Every day You wake Up Geo

[Lorie]

I had Tim set up with MDA of AL way before we moved him to AL in Jan 07. Maybe because I talked with them for a while before. I know they have been very good to us.

I posted about our MDA Telethon interview on Event Announcements! We are getting there.


Lorie

[Geo]

When we moved to Florida i was set up as a MDA patient ,but the doctor was a total Pill ,the gals at MDA office were sweeties but the Doctor in St Petes is the worst ,theres 2 but the one is not accepting anymore patients . So i told the Gals at MDA i wouldnt go to him ,they said if i need anything to just call . Geo

[Lorie]

Tim or I do not like his MDA/ALS Doctor. We have let them know that. My Neuro. is in the same group. If they don't let me use him. I want sign up.

Lorie

[Geo]

Whatever Happened to Compassion and Understanding ,to give someone a Hug or a nice pat of Compassion on the back . My Good Neuro had this but unfortunately i have to be here in a warmer Climate .
He would give me a Pat on the back and say" Im sorry you have this, but we'll try and help you " That doesnt take a whole lot and it makes the patient feel alot better knowing someone does care . I think they use to call this Bedside Manner . Geo

[Al]

I think yhey quit teaching that in medical school and replaced it with Big Bucks 101. Get em in Get em out make more money.
AL.

[Geo]

Yes Sir I Beleive your right. Shame though because juist a little of that stuff goes a long way to making us feel reassrued we have found a Doctor that cares about us and not our Wallet .Geo

[Judith]

Thank you all for your imput. When I went to UCLA for a second dx opinion in 2006, someone from MDA did come in a talk to me. She wrote down some information. When I emailed (I am speech impaired due to PLS) MDA and told them this, they said they have no record of me and that PLS was not on their neuromuscular list of diseases. I sent emails to different email addresses at MDA and asked them to check to see if what I was told is true or if I was misinformed and no one has responded.
I also sent three emails(different addresses) to ALSA about assistance in funding and no response from them either.
I am not going to give up. I will hammer them again, until I get someone to answer me.:confused:

[Geo]

Judy As ive said before Get your Doctor to sign you up . The lady that talked to you ,what did she say ?
I dont think they fund things but they do have wheelchairs etc . But get your doc. to sign you up . Your Neuro . Geo

[Judith]

Thanks Geo,
I will email my neuro.

[Geo]

If your not on SS Disability get down there and get started . if you have Paid into SS you should have something coming ,but you'll need your doctor records and his or her diagnoses of Probable PLS or ALS
they go by his or her recommendation . Geo

[Geo]

Your Very Welcome Geo

[Judith]

Thanks.
I applied for ss disability after I got the dx of PLS in 2006. I was accepted. I am eligible for Medicare this June.

[Judith]

Well, I contacted my Neuro. She called MDA and they told her they won't assist in funding for an AAC device because PLS isn't on their list of diseases. They told her I should contact ALSA. Well, I emailed 3 different people at ALSA twice each and not one of them has responded. I did find an email for their AAC coordinator and emailed him today re: funding assistance. We'll see what happens.

I am looking at getting a SGD. Does anyone out there have a hand held device that they really like? I am ambulatory. The bulbar area is all that is affected so far.

[Whitsend]

What's an SGD?

[Judith]

It is a Speech Generating Device. (SGD)

[Whitsend]

Thanks! Appreciate the info.