Re: Neurosarcoidosis Specialist in Atlanta, GA?

[Guest guest]

Hi y99y I'm in Northern Kentucky so I can't help with a doctor but I can tell you my experiences after going on FMLA. I had COBRA for about 6 months and the local social security office gave me the wrong information about my state issued medical card. Medicare doesn't take effect until 2 years after you are approved for social security disability. Fortunately for me I saw doctors at the local teaching hospital which has charity money to cover people who meet their financial guidelines. Have you started your application for social security disability? I'm sure one of the group can give you more info. Nice to meet you but sorry it was because of our disease.grannylunatic@...

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[Guest guest]

, Sorry we have met this way, but this is a terrific group that will help you immensely. They have really helped me. As to your question, there is a sarcoidosis specialist in Georgia but he is at a VA Hospital or was in 2004. I lived near Atlanta in ville and my ex used the VA facilities in Atlanta. The doctor I believe was in Augusta. I don't know his name but the VA hospital could probably give it to you. He may have gone into private practice by now, it would be worth a look. Maybe some of your friends in the medical field or in the military can help you find him. I wish you the best............Connie (Florida by residence - Heart in GA) wrote: Hi y99y I'm in Northern Kentucky so I can't help with a doctor but I can tell you my experiences after going on FMLA. I had COBRA for about 6 months and the local social security office gave me the wrong information about my state issued medical card. Medicare doesn't take effect until 2 years after you are approved for social security disability. Fortunately for me I saw doctors at the local teaching hospital which has charity money to cover people who meet their financial guidelines. Have you started your application for social security disability? I'm sure

one of the group can give you more info. Nice to meet you but sorry it was because of our disease.grannylunatic (AT) yahoo (DOT) com Fussy? Opinionated? Impossible to please? Perfect. Join Yahoo!'s user panel and lay it on us.

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[Guest guest]

Does anyone

have any suggestions for me re: SSDI and short/long term disability

and Medicare insurance. Does anyone know a NS specialist in the

Atlanta area or just a EXCELLENT Dr. that I can see? Thanks in advance

for your assistance and suggestions.

We get many questions about disability--and how to go about applying for SSDI.

It is possible to get SSDI when you have NS. You will need to call your local Social Security office, and either go by or ask them to mail you the application.

Once you have been unable to work for 6 consecutive months-- you need to get the ball rolling on your SSDI. It is important to make sure you meet all their deadlines--as any interruption in not getting the forms in to them, can make it so that you have to go thru the whole process again--and you lose your start date if you don't comply with the deadlines.

You want to get the names and addresses down of all the MD's you've seen. You will want copies of your medical records sent to SSDI (Soc security will give you a "Release of Med Records" form to sign). Also, request a copy of your medical records be sent to you. That way you have the information also.

The easiest way to request a copy of your records is to ask for a copy of your XRAY, CT's, Labs, MRI's--etc. when you go into the office for your appts with the MD. Keep a folder--so that as you go from specialist to specialist--you can give them the copy of the latest work that has been done. (Your MD's may be slow to get this to the other MD's--so hand carry your reports.)

Write down your symptoms, and how they effect you. For example, if you can no longer go grocery shopping without being so exhausted that you're down in bed for the next couple of days-- state that.

If you find you have problems remembering things--write it down. If you can't finish projects--write it down. If you don't know where you parked your car because of short-term memory loss-- write it down. If you need a cane, or oxygen, or a powerchair to get around--write it down.

If you need help with the finances because you can no longer get your bills paid on time--or can no longer balance the checkbook--write it down.

If you've lost the ability to enjoy sex, or have problems with family not understanding what has happened to you-- write it down.

Stress what you have lost due to chronic illness. Don't powder coat it-- tell it like it is.

Even if you don't have biopsy proven sarcoidosis-- yet have all the pain, neuropathy, the comprehension loss, the short-term memory loss, the exhaustion, fatigue, etc. there are tests that can prove the "subjective complaints" that you're trying to get the MD to understand. This test is Neuropsych Testing. This test can prove to the MD's that you aren't faking (malingering) and that depression alone is not the cause of your problems. So don't be afraid to request that your MD set up an appt with a Neuropsychiatrist.

EMG's, EEG's, Sleep Studies, are also good tests to have done. They show brain waves (or slowed response in brain waves) and can also prove that there are problems that may not show up on CT's or MRI's.

You will need several friends, bosses, co-workers or family members to write letters on your behalf that state what they have seen in the way of changes. If you have a close friend that you work with--and they can state that you used to "run the office", be able to "problem solve" or "multi-task"--and now aren't able to get the paper to the desk before you forget what you were trying to do-- have them write it down.

If you've got a good friend that can attest to the fact that you can hardly carry on an intelligent conversation--or finish your sentences when you're talking--ask them to write it down. (SSDI will ask for 2 or 3 references).

If you can't comprehend what you read--or if you have to reread everything multiple times before you understand it-- write it down. If you find that filling out the form to apply for your SSDI is too hard to do--so you have someone helping you-- let them know that.

These are all things that will help you get approved for your SSDI.

There are articles in our LINKS section that relate to this topic. Here is the address:

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

Go to the LINKS and check out the folders and different sites. Also in the ARCHIVES you will find many posts about disability and SSDI, SSI as well as the tests and exams that should be done.

Please let us know if we can help you further.

Sincerely,

Tracie

NS Co-owner/moderator

Here is a site for MD's specialists: http://www.sarcoidosisonlinesites.com

P. Kimani, MD FCCP

450 14th Street NW

Atlanta, GA 30318

************************************** See what's free at http://www.aol.com.

[Guest guest]

I sent an email previously with an article I'd written on SSDI some time ago. I also included the name of an MD that is in Atlanta.

I wanted to welcome you to the gang-- we are almost 500 members strong! The wealth of information and support is incredible, and we try to get articles and case histories to support the information we share. Our ARCHIVES AND LINKS have a collection of posts that we've all gleaned information from- and you are welcome to print out the info and take it with you to your MD's.

We do have 5 of us moderating the group, and we are all challenged by this disease, so if we don't answer right away, know that someone will get to you within a short period of time. Right now, most of us are in flare- and undergoing treatment- so we're tag-teaming out here.

Welcome to the family, we truly wish you did not have a need for this group- but since you do- you've found a good place to be!

Blessings,

Tracie

NS Co-owner/moderator************************************** See what's free at http://www.aol.com.

[Guest guest]

I have Neurosarcoidosis since 2003. I live in atlanta and there are

no neurosarcoidoisis doctors here since DR. Stern at Emory hospital

left in 2004. I currently go to Emory still to a DR. Rafeal in

the Pulumnary department. I am going to see him again in July.

Maybe you could see him also. He has taken over my sarcoidosis and

treats the lung kind but I still go to him because Emory Hospital is

very good with treating me. If you would like his number let me

know. I had some of the same symptoms as you but they have cleared

up for the most part. Just recently I have been experiencing a few

problems and that is why I am going back. Email me if you would like

the number abnd more information. sglaspie@...

Shauna in Atlanta

>

> Hello everyone,

> This group has already been helpful and educational to me and I

just

> joined today. I've been having symptoms since Dec 06 but it became

> worst in Feb 07. First they thought a stoke, then brain tumor,

brain

> lesion, MS and now neurosarcoidosis. I'm a nurse of almost 20yr now

> I'm the patient; a difficult role reversal. I have short term

memory

> loss, fatigue, severe daily headaches, occasional migraines,

> difficulty with concentration and insight and I have difficulty

having

> a conversation, I just kinda stand there cause I don't know what to

> say. I have exhausted my FMLA and now a true diagnosis as I fear

> termination due to absence and declining performance. That's not

how I

> want to leave. I'm a single parent with 3 children therefore I must

> work as much as I possiblity can and I need my insurance. Does

anyone

> have any suggestions for me re: SSDI and short/long term disability

> and Medicare insurance. Does anyone know a NS specialist in the

> Atlanta area or just a EXCELLENT Dr. that I can see? Thanks in

advance

> for your assistance and suggestions.

>