Update on Son

[Guest guest]

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

[Guest guest]

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