Re: Update on Son- ->> Tracie

[Guest guest]

Tracie...

Thank you so much for your response. I'm going to print off your

reply and take it to Greg at the hospital tomorrow. I think it will

help him to know there are others out there that have been through the

same things.

I'm so glad I found this group. Hopefully Greg will join in once he

is back home and can get his computer up and running.

Hugs,

>

> Hi ,

> Right now it sounds like your son is in such a huge flare, and that

the docs will need to be getting his medications in line so that he

might be able to return to work.  It is going to be several months

before he is stabilized, and it may be that they still need to find a

combination of meds that will help him.

> Sadly, sarc is one of those diseases where what works for one,

doesn't help another. 

> It is very possible that he will be able to get back to work--

however, he will need to be able to listen to his body, on the days it

says sleep-- you sleep.  The fatigue is the biggest ongoing issue that

we all fight, and it means that you balance what you can do each day.

> Make sure that he gets signed up for FMLA-- Family Medical Leave

Act, so that his job continues to be protected.  If he is Union-- you

can call the Union Hall to get this going.  Otherwise, you go through

his Human Resource Manager and his doctors. 

> How long has been off work?  At six months, you want to start

filing for SSDI-- as it will take up to a couple of years (6 months at

least) for all the paperwork shuffle to go through.  Whatever he gets

from his State Disability would then be adjusted to the amount that he

would get if he has to go out longterm on Social Security Disability

Insurance.  It amounts to about 25% of what he made working, but it is

better than nothing.  Also, he may have a Long-term Disability through

his work-- that will match his wages up to whatever amount they've

negotiated for. 

> He is in for a long haul to get better-- but it is very possible.  I

was doing similar stuff, confused to where I was-- time and task

disoriented, no short-term memory, etc-- and when we finally got my

sleep apnea, my NS, and my pulmonary sarc back under control, some of

those issues have gotten much much better. 

> If he is on Ambien or other sleep aids-- talk to his docs- these can

cause major neuro symptoms.  I know for me, Ambien was making my

short-term memory issues worse, and the longer I took it-- the worse

the situation were getting.  I had to WEAN off it-- you'll have some

sleepless nights, which will increase the pain issues for a short

while, but it was worth it to regain some concentration issues.  I

know take Melatonin 15mg at bedtime, and that has worked better than

the prescription stuff.

> Tell him to be patient, it is a slow process, but he will get

better.  What has to happen is that they'll try the Aza for a while,

see how it does, if it doesn't work, then they can add Methotrexate,

Plaquenil, Arava, or one of a host of BRM's-- Biological Response

Modifiers.  These are the Remicade, Humira or Enbrel.  You can only

add one thing at a time, to see how it works, or if there is a

problem,--they can identify what is causing the problem.  If they add

more than one at a time-- everything can get real confusing. 

> Let us know what we can do to be of additional help and support,

> Sincerely,

> Tracie

> NS Co-owner/moderator

>

>

>

> Update on Son

>

>

> Thanks for the previous welcome to the group. I'm here for a 44 yr

> old son who was diagnosed with Neurosarcoidosis last May. He's

> currently in the hospital again trying to get him adjusted to meds.

> He was previously on Prednisone.. .then Azathioprine. Now he's on

> both. The biggest problem we are having now is his memory and his

> balance. One minute he seems normal and the next he is talking about

> something that is totally off the wall. Yesterday he was convinced he

> had been in a hospital in Oklahoma and had just arrived at this

> hospital in Fort Worth, Texas.....he' s been here for two weeks. He

> thinks he's going to be able to go back to work.....he was put family

> medical leave because they felt he was a danger to himself and

> others...he' s one of the top mechanics at a local Mercedes dealership.

> I point-blank asked the doctor when he could go back to work and he

> said he was going to take months for the meds to really take control,

> he may never fully recover, and would probably never go back to work.

> Greg is not accepting that information. ...which is great, I want him

> to be a fighter! From your experience.. ..will he ever be able to be

> independent again?

>

> I'm wondering if any of you know of any doctors in the Dallas-Fort

> Worth area that specialize in this disease and you would recommend?

> One of the doctors mentioned he was trying to get hold of a doctor at

> University of Texas Southwestern Medical Center in Dallas. He thought

> they might have a program that would help. Other than that, they are

> thinking Mayo Clinic.

>

> Thanks for all your information and please keep Greg in your thoughts

> and prayers.

>

> Hugs,

> / Texas

> Cancer Survivor since 1986

> Lymph Node & Pulmonary Sarcoid - 1970

>