Re: NS inside spinal cord?

[Guest guest]

I have been on Social Security Disability since 1995. Originally the docs thought I had MS, but when it spread from brain/spinal chord to lungs in 2000 docs gave me permanent disabilty. I had to hire a lawyer, though, as they turned down my first application. Good luck with your application. Sounds like you have a lot going on. Have hope, though, as I have been i a relative remission since 2008. I used to have terrible neuromuscular involvement and I was in a wheelchair/scooter for several years. Ever since I seriously started using a rowing machine and was put on Imuran I have been doing much better. I also had some success on cytoxan but I had to go off of it when I got a staph infection that went to sepsis. Good luck with everything and I hope you

feel better soon.To: Neurosarcoidosis Sent: Sun, September 26, 2010 1:38:30 PMSubject: NS inside spinal cord?

Hi.

My NS was confirmed in my cord st C4-T1 2 yrs ago by biopsy. Been on Cellcept (3g/day) and prednisone (varying from 40 mg/day now down to 10mg), with Neurontin(3000mg/day), Wellbutrin XL (300mg), Warfarin (5mg/day, therapeutic 2.8 PtINR), folic acid, potassium, Triplix, Crestor, Metformin, and occasional Vicodin (10mg/350 of Tylenol). I need Tyleniol PM to sleep. I have large swelling L ankle/hand, high pain R foot/calf/knee/lower thigh w/severe cramping L side from chest to groin, no feeling LH fingers pinky to middle, loss of feeling RH pinky. Loss also lower L arm topside. No temperature feelings below chest, except for bottom of left foor. Some neck/back pain. Have been a very high tech designer/mathematician, but am having a hard time w/all the fuzzy thinking from all these meds. Besides prayer, physical therapies and my loving wife, is there anything anyone here can suggest I do or keep tabs on medically to help? Hanging in each day is

hard and I worry how long I can keep it up. It worries me that my doc in '95 said ave life expectancy of regular sarcoid, which I had/still have in my lungs (and is stable), was 20 yrs from diagnosis....do I play now, or still save heavy for a retirement? Does Social Security SSI recognize sarcoid as a disabling disease yet? Do they add anything past 65?

[Guest guest]

Re: anything else to do, are you confident in your medical team's knowledge & experience, especially with this type of involvement? One thing that may always be a good idea is to get a second opinion. Most insurance carriers encourage second (or more) opinions regarding major surgery, so would probably pay for it in a case like this. Where are you getting your NS care?

Da Rabbit said: do I play now, or still save heavy for a retirement?As far as retirement, we all have to decide. Even healthy people never know when life could come to an end. I've seen movies in which someone thinks they are dying & parties, travels, etc. But in real life, the people I've known have wanted to spend whatever time left with family, friends, reconciling, leaving a meaningful legacy, etc. For me personally, I don't have enough savings to party much, or leave a bunch to my kids! Life is so unpredictable; I'm assuming I'll be needing what little money I have squirreled away, but have a will so that anything that lasts longer than I do will go to something important to me. Does that make sense? There is a wonderful little book called "Living With the End in Mind." It was written by a young mother with aggressive breast cancer & her husband. They approached life with hope & enthusiam, after making plans (wills, advanced directives, letters & videos for their daughter, etc.) for either of their deaths.

Social Security does recognize sarc as a disability, although individual adjudicators may handle cases differently. And obviously, just having a sarc diagnosis doesn't equal disability. I'm 61 & have been told that my S.S. income will not decrease when I turn 65 (I will lose my private disability coverage, which is half of my total income. At that point I'll begin receiving a small pension from my former employer, but will still have a drastic drop in income, so I'm trying to adjust to living on the smaller income now & putting the difference in savings. Luckily I'm pretty frugal & have a small house payment, no car payment. I spend more money on my pets & kayaking than on clothes, travel or anything else!) My biggest concern, of course, is meds & health care. This year I hit the drug gap in May & probably won't get out until late December. Most of my meds are generics, but my eye drops are $233/mo., my inhaler is $208/mo., and Lyrica (for neuropathic pain in my feet) is $140/mo. I've been able to get inhaler samples most of the time, but it still adds up pretty fast.

Sorry for the rambling, but I get easily distracted! Hopefully, others will be able to give you some more information & ideas.

Ramblin' RoseModerator

It's not that life is so short-------It's that we wait so long to begin.

(attributed to Wooden, among others)

> To: Neurosarcoidosis > Date: Sun, 26 Sep 2010 18:38:30 +0000> Subject: NS inside spinal cord?> > Hi.> My NS was confirmed in my cord st C4-T1 2 yrs ago by biopsy. Been on Cellcept (3g/day) and prednisone (varying from 40 mg/day now down to 10mg), with Neurontin(3000mg/day), Wellbutrin XL (300mg), Warfarin (5mg/day, therapeutic 2.8 PtINR), folic acid, potassium, Triplix, Crestor, Metformin, and occasional Vicodin (10mg/350 of Tylenol). I need Tyleniol PM to sleep. I have large swelling L ankle/hand, high pain R foot/calf/knee/lower thigh w/severe cramping L side from chest to groin, no feeling LH fingers pinky to middle, loss of feeling RH pinky. Loss also lower L arm topside. No temperature feelings below chest, except for bottom of left foor. Some neck/back pain. Have been a very high tech designer/mathematician, but am having a hard time w/all the fuzzy thinking from all these meds. Besides prayer, physical therapies and my loving wife, is there anything anyone here can suggest I do or keep tabs on medically to help? Hanging in each day is hard and I worry how long I can keep it up. It worries me that my doc in '95 said ave life expectancy of regular sarcoid, which I had/still have in my lungs (and is stable), was 20 yrs from diagnosis....do I play now, or still save heavy for a retirement? Does Social Security SSI recognize sarcoid as a disabling disease yet? Do they add anything past 65?> > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >

[Guest guest]

Getting care at s Hopkins Baltimore, diagnosed w/Drs. Senter and in

Pittsburgh , so probably dont need a second...should I see anyone else? I seem

pretty functional for now.

Thanks

T

>

>

> Re: anything else to do, are you confident in your medical team's knowledge &

experience, especially with this type of involvement? One thing that may always

be a good idea is to get a second opinion. Most insurance carriers encourage

second (or more) opinions regarding major surgery, so would probably pay for it

in a case like this. Where are you getting your NS care?

>

> Da Rabbit said: do I play now, or still save heavy for a retirement?

>

> As far as retirement, we all have to decide. Even healthy people never know

when life could come to an end. I've seen movies in which someone thinks they

are dying & parties, travels, etc. But in real life, the people I've known have

wanted to spend whatever time left with family, friends, reconciling, leaving a

meaningful legacy, etc. For me personally, I don't have enough savings to party

much, or leave a bunch to my kids! Life is so unpredictable; I'm assuming I'll

be needing what little money I have squirreled away, but have a will so that

anything that lasts longer than I do will go to something important to me. Does

that make sense? There is a wonderful little book called " Living With the End

in Mind. " It was written by a young mother with aggressive breast cancer & her

husband. They approached life with hope & enthusiam, after making plans (wills,

advanced directives, letters & videos for their daughter, etc.) for either of

their deaths.

>

> Social Security does recognize sarc as a disability, although individual

adjudicators may handle cases differently. And obviously, just having a sarc

diagnosis doesn't equal disability. I'm 61 & have been told that my S.S. income

will not decrease when I turn 65 (I will lose my private disability coverage,

which is half of my total income. At that point I'll begin receiving a small

pension from my former employer, but will still have a drastic drop in income,

so I'm trying to adjust to living on the smaller income now & putting the

difference in savings. Luckily I'm pretty frugal & have a small house payment,

no car payment. I spend more money on my pets & kayaking than on clothes,

travel or anything else!) My biggest concern, of course, is meds & health care.

This year I hit the drug gap in May & probably won't get out until late

December. Most of my meds are generics, but my eye drops are $233/mo., my

inhaler is $208/mo., and Lyrica (for neuropathic pain in my feet) is $140/mo.

I've been able to get inhaler samples most of the time, but it still adds up

pretty fast.

>

> Sorry for the rambling, but I get easily distracted! Hopefully, others will

be able to give you some more information & ideas.

>

>

> Ramblin' Rose

> Moderator

>

>

>

>

> It's not that life is so short-------It's that we wait so long to begin.

> (attributed to Wooden, among others)

>

>

>

>

>

> > To: Neurosarcoidosis

> > From: thomnrita@...

> > Date: Sun, 26 Sep 2010 18:38:30 +0000

> > Subject: NS inside spinal cord?

> >

> > Hi.

> > My NS was confirmed in my cord st C4-T1 2 yrs ago by biopsy. Been on

Cellcept (3g/day) and prednisone (varying from 40 mg/day now down to 10mg), with

Neurontin(3000mg/day), Wellbutrin XL (300mg), Warfarin (5mg/day, therapeutic 2.8

PtINR), folic acid, potassium, Triplix, Crestor, Metformin, and occasional

Vicodin (10mg/350 of Tylenol). I need Tyleniol PM to sleep. I have large

swelling L ankle/hand, high pain R foot/calf/knee/lower thigh w/severe cramping

L side from chest to groin, no feeling LH fingers pinky to middle, loss of

feeling RH pinky. Loss also lower L arm topside. No temperature feelings below

chest, except for bottom of left foor. Some neck/back pain. Have been a very

high tech designer/mathematician, but am having a hard time w/all the fuzzy

thinking from all these meds. Besides prayer, physical therapies and my loving

wife, is there anything anyone here can suggest I do or keep tabs on medically

to help? Hanging in each day is hard and I worry how long I can keep it up. It

worries me that my doc in '95 said ave life expectancy of regular sarcoid, which

I had/still have in my lungs (and is stable), was 20 yrs from diagnosis....do I

play now, or still save heavy for a retirement? Does Social Security SSI

recognize sarcoid as a disabling disease yet? Do they add anything past 65?

> >

> >

> >

> > ------------------------------------

> >

> > ~~~~ *** ~~~ *** ~~~ *** ~~~~

> > The Neurosarcoidosis Community

> >

> >

> >

> > Message Archives:-

> > http://groups.yahoo.com/group/Neurosarcoidosis/messages

> >

> > Members Database:-

> > Listings of locations, phone numbers, and instant messengers.

> > http://groups.yahoo.com/group/Neurosarcoidosis/database

> >

> >

[Guest guest]

It sounds like you are in good hands. Just be assertive in asking questions, being satisfied with explanations & understanding options.

Ramblin' RoseModerator

It's not that life is so short-------It's that we wait so long to begin.

(attributed to Wooden, among others)

> To: Neurosarcoidosis > Date: Wed, 29 Sep 2010 00:31:27 +0000> Subject: Re: NS inside spinal cord?> > Getting care at s Hopkins Baltimore, diagnosed w/Drs. Senter and in Pittsburgh , so probably dont need a second...should I see anyone else? I seem pretty functional for now.> Thanks> T> > > >> > > > Re: anything else to do, are you confident in your medical team's knowledge & experience, especially with this type of involvement? One thing that may always be a good idea is to get a second opinion. Most insurance carriers encourage second (or more) opinions regarding major surgery, so would probably pay for it in a case like this. Where are you getting your NS care? > > > > Da Rabbit said: do I play now, or still save heavy for a retirement?> > > > As far as retirement, we all have to decide. Even healthy people never know when life could come to an end. I've seen movies in which someone thinks they are dying & parties, travels, etc. But in real life, the people I've known have wanted to spend whatever time left with family, friends, reconciling, leaving a meaningful legacy, etc. For me personally, I don't have enough savings to party much, or leave a bunch to my kids! Life is so unpredictable; I'm assuming I'll be needing what little money I have squirreled away, but have a will so that anything that lasts longer than I do will go to something important to me. Does that make sense? There is a wonderful little book called "Living With the End in Mind." It was written by a young mother with aggressive breast cancer & her husband. They approached life with hope & enthusiam, after making plans (wills, advanced directives, letters & videos for their daughter, etc.) for either of their deaths. > > > > Social Security does recognize sarc as a disability, although individual adjudicators may handle cases differently. And obviously, just having a sarc diagnosis doesn't equal disability. I'm 61 & have been told that my S.S. income will not decrease when I turn 65 (I will lose my private disability coverage, which is half of my total income. At that point I'll begin receiving a small pension from my former employer, but will still have a drastic drop in income, so I'm trying to adjust to living on the smaller income now & putting the difference in savings. Luckily I'm pretty frugal & have a small house payment, no car payment. I spend more money on my pets & kayaking than on clothes, travel or anything else!) My biggest concern, of course, is meds & health care. This year I hit the drug gap in May & probably won't get out until late December. Most of my meds are generics, but my eye drops are $233/mo., my inhaler is $208/mo., and Lyrica (for neuropathic pain in my feet) is $140/mo. I've been able to get inhaler samples most of the time, but it still adds up pretty fast.> > > > Sorry for the rambling, but I get easily distracted! Hopefully, others will be able to give you some more information & ideas.> > > > > > Ramblin' Rose> > Moderator> > > > > > > > > > It's not that life is so short-------It's that we wait so long to begin. > > (attributed to Wooden, among others) > > > > > > > > > > > > > To: Neurosarcoidosis > > > > > Date: Sun, 26 Sep 2010 18:38:30 +0000> > > Subject: NS inside spinal cord?> > > > > > Hi.> > > My NS was confirmed in my cord st C4-T1 2 yrs ago by biopsy. Been on Cellcept (3g/day) and prednisone (varying from 40 mg/day now down to 10mg), with Neurontin(3000mg/day), Wellbutrin XL (300mg), Warfarin (5mg/day, therapeutic 2.8 PtINR), folic acid, potassium, Triplix, Crestor, Metformin, and occasional Vicodin (10mg/350 of Tylenol). I need Tyleniol PM to sleep. I have large swelling L ankle/hand, high pain R foot/calf/knee/lower thigh w/severe cramping L side from chest to groin, no feeling LH fingers pinky to middle, loss of feeling RH pinky. Loss also lower L arm topside. No temperature feelings below chest, except for bottom of left foor. Some neck/back pain. Have been a very high tech designer/mathematician, but am having a hard time w/all the fuzzy thinking from all these meds. Besides prayer, physical therapies and my loving wife, is there anything anyone here can suggest I do or keep tabs on medically to help? Hanging in each day is hard and I worry how long I can keep it up. It worries me that my doc in '95 said ave life expectancy of regular sarcoid, which I had/still have in my lungs (and is stable), was 20 yrs from diagnosis....do I play now, or still save heavy for a retirement? Does Social Security SSI recognize sarcoid as a disabling disease yet? Do they add anything past 65?> > > > > > > > > > > > ------------------------------------> > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~> > > The Neurosarcoidosis Community> > > > > > > > > > > > Message Archives:-> > > http://groups.yahoo.com/group/Neurosarcoidosis/messages> > > > > > Members Database:-> > > Listings of locations, phone numbers, and instant messengers.> > > http://groups.yahoo.com/group/Neurosarcoidosis/database > > > > > >