members from Australia?

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Sherrie, did you say that you are from Australia? We have a few list members from Australia; hopefully someone will see these posts & offer some info. I looked on a website for sarc docs & found one in Australia; I don't know how current this info is but you could check it out. Even if this guy isn't near you, he may be able to refer you to someone.

, Dr. Roger K. A. Thoracic Consultant Physician Wesley Medical CentreLevel 4, Suite 4640 Chasely StreetAuchenflower Qld 4066Brisbane, AustraliaPhone: (07) 3719 5577 Fax: (07) 3719 5177respiratorylab@...

You might also try e-mailing Dr. Sharma, one of the top sarc docs in the world, to see if he knows someone in your area. This is his contact info:

Sharma, Om P. M.D.University of Southern California Medical Center1200 North State Street Room 11900Los Angeles, CA 90033

"The work up for sarcoidosis was an xray of the chest, serum ACE and calcium and a lumbar puncture. I was told that these were all clear." Although most folks with sarc have lung involvement, at least enlarged hilar nodes, there are many who don't. Some have only neuro or cardiac involvement. I for one have never had an elevated ACE; initially I thought it was because I was taking an ACE-inhibitor for hypertension. After being switched to other meds, my ACE has still been normal. My calcium & spinal tap were also normal. I guess I was lucky to have positive lymph node & lung biopsies, then when I developed neuro symptoms it was easier to get the NS diagnosis (even with negative MRI's). That's why it's so important to have a knowledgeable doc, who uses a detailed history & very thorough physical exam, not just technology. In a perfect world doctors

would be skilled in the art of medicine as well as the science. You do seem to have amassed quite a collection of "ologists!" You didn't mention a dermatologist for the skin changes, or an opthamologist for your eyes. It's important to see an MD for these kinds of eye problems, rather than an optician. Opticians are fine for routine eye exams, glasses, etc. The frustrating thing is to find someone who can try to tie all these issues together. Often a rheumatologist is good for that, but maybe this one isn't up to the job. It's certainly possible to have more than one condition, but often when you have this many systems involved there is an underlying factor at work. I'm not a doctor, but I am a retired RN/nurse-midwife with a lot of experience trying to plow through the medical maze.

I'd really like to see you get sarc ruled out by a more thorough workup than what you've had. If it's not sarc, one of these ologists ought to be able to figure out what it is! Meanwhile, you may want to try the antidepressant, if only to improve your ability to cope & function. It can take two or more weeks for the med to kick in, so be patient. And if possible, do your own research, putting in some of your main symptoms & seeing what pops up. Many of us have had to educate our docs; some have been told they can't have NS because it's too rare! Arrrrrgggghhh! And they wonder why so many patients go to the Internet.

As you can see, I've earned my nickname of Ramblin' Rose. This group is usually much more active; not sure if it's the heat here in the States or what. Hopefully we'll get some more input from other members. Just remember, whether it's the sarc monster (Darlene's name for it) or some other unsavory entity, you are not alone.

Ramblin' RoseModerator

"How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these."

~ Washington Carver

> To: Neurosarcoidosis > Date: Sun, 8 Aug 2010 01:54:13 +0000> Subject: Re: Antidepressants> > Hi Rose,> The neurological problems have waxed and waned over the past three years, around the same time I was diagnosed with hypopituitarism. The fatigue and cognitive problems temporarly resolved with cortisol replacement. The chronic pain resolved with both thyroid and cortisol replacements. I also get weird vision - despite being 20/20. Also, when I lay on my face, such as in a massage, I can barely see for quite some time afterwards. They recently found that I have inflammation of the conjunctiva and I've been referred to an eye specialist...the top corners of my eyes, especially the right, are white and limpy. I also have red lumps on my cheeks and, when cold, my skin shows lots of white spots. > > The work up for sarcoidosis was an xray of the chest, serum ACE and calcium and a lumbar puncture. I was told that these were all clear. I have an endocrinologist and have seen a rheumo, gastro and neuro. Actually, I have no faith in docs... it's just that I don't know where the good one's are and am wearing very thin! There doesn't seem to be many sarc specialists in Aus... particularly my state. My husband is great and has said that there is no pressure to work more than 3 days a week... but it's still hard because everything is relative and he cannot quite grasp that concept!> > Thanks> > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> 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 > >