Re: sarcoid in the brain and around the hypothalmus

[Guest guest]

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> From: mary bauer <marybauerb (AT) yahoo (DOT) com>

> Subject: Questions ???

> To: Neurosarcoidosis@ yahoogroups. com

> Date: Saturday, March 21, 2009, 9:00 PM

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> Does an Ant inflammatory Diet make a difference in battling N.S.??

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> I have been taking Prednisone 60mg dly since Oct, 2008.  Sleeping through the

night continues to be an issue.  Am now trying Lunesta 4 mg. with some but not

complete relief-What has helped other people with this issue?

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> The sarcoid is located in my brain next to the hypothalamus- Original size was

2 1/2 " X 1/2 " , has shrunk to almost nonexistent, between Oct and Nov,2008.

Between Nov.,2008 and Jan. 2009, no change. The other area affected is in my

spine from C6 thru T2.  Again 1st follow-up M.R.I. showed signed shrinkage, 2nd

follow-up showed no change.  I am returning April 13th for M..R.I and Lumbar

Puncture.  Should I be concerned due no change between the 1st and 2nd M.R.I.?? 

I don't feel any better.

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> I feel so lousy and fussy headed, is this due to the Prednisone, higher dose

of Lunesta, N.S. or a combination of all three.  I go to he Mayo Clinic in

Rochester, Mn..  I am so tired of hearing " We aren't sure, we deal with so few

of you with this diagnoses "   I kinda feel like I am their guinea pig.  Where is

the best medical facility in the country to offer me the best chance in beating

this disease?

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> What are my chances in beating this deisease??? There must be stats somewhere.

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> Help..I need answers to save my sanity...Thank you,  Thank You

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>               Desparate

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I to went mayo in rochester and saw Dr.Todd Nippholt and he was wonderful.

I have developed adrenal insufficiency from the sarcoid attacking the endocrine

system. Which includes the hypothalmus you might ask about this because it has

caused many problems and a lot of hospitalizations if you read about ai you will

read about adrenal crisis which is the reason for the hospitalizations. Has this

even come up? too many steroids but like I asked Dr. Nippolt if the steroids

were keeping me alive and the answer was yes.

To all I just returned from a two week vacation in Florida visiting my daughter

and family the Grandchildren are great and the 5year old Raina did not want me

to leave. Tearful departure we also took our other and 4 yr old granddaughter

Arinna who live in maryland and we sure had a great time. I did overdue it so I

came back last monday and right into the hospital for iv fluids and steroids iv

and yesterday the vertigo returned I can't win. I read the posts of others with

vertigo and so I am so afraid of falling down. I understand your desperation and

sometimes we have to feel that as awful as it is I wish I could take it away

from you? If I ever figure out how to do that oh boy miracles and healing maybe

someday! When I start to ramble it is time to say goodbye for today! Have to

mention 8 month old Grandson Braeden is so beautiful I could cuddle him all day

but of course he would rather scoot around. prayers to all your sarc friend Anne