SS compassionate allowances,Malignant MS

[0485c10]

SS expands compassionate allowances to include Malignant MS


SS has a list of compassionate allowances which will be approved in days not months or years. Previously there were a couple allowances that i knew of ALS(lou gehrigs disease), kidney failure.

On Oct 13, 2011 SS added 13 new compassionate allowance conditions involving the immune system and neurological conditions.

Malignant Multiple Sclerosis first on the list.

http://www.socialsecurity.gov/presso...llowances.html

(must be more common than i thought & i thought it was extremely rare to the point of not really occurring. I was wrong on that if it made the list)

[Sequoia]

Malignant MS is the same thing as Marburg Variant MS, and while it is rare, it's not "rare to the point of not really occurring"...sadly.

[0485c10]

In the 7 years since i have been diagnosed this definition of MS has changed. Now that SS has included it in their compassionate allowance it must be more concretely defined, i'm thinking....

In the past,
I have read its Marberg Variant MS,
I have read its Fulminant MS,
Recently I read that Progressive Relapsing was Marberg MS??
I think, i have read the term Tumafactive MS too?


Now there is Malignant MS--and SS is using the definition to expedite evaluation of claims.

so i thought there must be a more concrete definition for it, then i have found in the past when i looked at what Marburgs was in Wikki's

and it said that "Malignant MS" is an umbrella term of a very severe variant of MS that includes all of the above variants of MS and is characterized by ms patients who reach a significant amount of disability in less than 5 years from the onset of their symptoms.

http://en.wikipedia.org/wiki/Marburg_multiple_sclerosis

its defined by time in other words. They all might not be malignant & they all could be.


I have corresponded with someone who was diagnosed with "Mahrberg MS" and someone who was diagnosed with "Fulminant MS" both had an initial symptom of blindness that improved with time(not sure if it was a temporary or permenant improvement?)

..if i run into newly diagnosed person with the shock of an unexpected diagnosis like this, before they have time to process the shock..my answer is it takes time to know...both people read this diagnosis on their MRI report.

Their serious diagnosis was not given to them by the neuro who ordered the MRI but by someone who was sitting in a closet at a long distance interpreting the MRI.

It takes time to know according to wikki.

BTW- i do not know how either are doing now, it was a brief internet correspondence. i hope it was not the severe kind for them. Both were driving a car last time i had an update on their conditions.

[onlyairfare]

I am wondering if I am understanding this correctly. Are you saying that the radiologist reading the MRI diagnosed malignant MS?

Most MRI reports I see say something like "consistent with MS" and then often list other diagnoses that should be considered. Usually the radiologist has never examined the patient, and is likely unaware of other lab results that are often considered in making the diagnosis.

Maybe if the radiologist has access to previous MRI's, he/she could see rapid increase in the lesions. But even then, we all know that number of lesions does not necessarily correlate with severity of one's disease symptoms. And sadly, there are some MS patients who progress very rapidly, so it does not take anywhere near 5 years to tell that their version of MS is indeed "malignant."

Anyway, it is good to know that Social Security is willing to be more helpful with those disabled by severe and rapidly progressing diseases of various sorts. Many MSers describe years of application and appeals before they are awarded SSDI. Sometimes that is too late to be of any help.

[0485c10]

Yes they read it in their MRI report. I'm uncertain why it was there before their nuero had given them the diagnosis.
One was actually the panicked wife of the person whose diagnosis was in the MRI report & the other just read the report and confronted her neuro after wards. It was a fulminate MS he did not disagree.

fulminate means of sudden onset. she woke up not being able to see or think. the other had mahrberg ms in his report& i too wondered how that could be determined by a single mri. it was a severe initial attack though.

malignant ms by wikki is an umbrella term that covers all that have severe disability 5 years from onset.

more i am thinking that given the increase in diagnostic tools with earlier and earlier diagnosis--SS might be attempting to differentiate.

[0485c10]

ie. SS is building/increasing its list of compassionate allowances to get to a point of what will be awarded and what will be denied through delay? Its a potential cost savings plan in a period of high deficits? Was severe ms not quickly processed before?

[0485c10]

malignant ms by wikki is an umbrella term that covers all that have severe disability 5 years from onset.

hospice is also defined by time, hospice is available to people within 6 months of death.

malignant ms would be ms that is severly disabling within 5 years of onset...

not that they have to wait 6 months for death before the qualify for hospice or 5 years for severe disability before its malignant ms. no one will complain if they don't die in 6 months or are severely disabled in 5. HOPE.

[onlyairfare]

hospice is also defined by time, hospice is available to people within 6 months of death

no one will complain if they don't die in 6 months or are severely disabled in 5. HOPE.

Oh yes they do! I hope this is no longer happening, but when I worked in the insurance industry, there were indeed hospices that were investigated by Medicare for possible fraud because their patients "lived too long." Any hospice that had too many patients living longer than 6 months (perhaps because better care was provided?) was subject to investigation.

It's not necessarily easy to predict when a sick person will die, especially when they have serious heart, lung or liver disease, as opposed to certain types of cancer.

OTOH, if you've been diagnosed with MS for less than 5 years and are significantly disabled very quickly, that is easier to document.

I know there have been threads here where MSers have described lengthy delays in obtaining SSDI, so in some cases there was no ability to "fast track" the application.

[Shiela]

I wonder if the radiologist said, "...consistent with malignant MS" or if it said Malignant MS. There would be a considerable difference in the wording. "consistent with" is not a diagnosis but rather a description of the MRI findings alone.

[0485c10]

Could be, i didn't see what it said on the report, i just got a description 2nd hand from someone who was panicked at what it meant. i did look(google) for how an mri show marberg MS and i did not find anything. That is why when SS identified malignant ms i googled to find out what that was, i thought it might have a more definable paramaters. And it does, a predicted 5 years. I suppose like ms is being diagnosed earlier and earlier then have more certainty in their predictions now?