Re: [Neurosarcoid/change email whiteao3@...

[Guest guest]

ITS BEEN A VERY LONG TIME ,IVE BEEN DEALING WITH THE JOB NOT UDERSTANDING AND SSI YHAT I WILL GET SOON ,THIS WILL MESS UP YOUR CREDIT BECAUSE THERE IS NO FUNDS FOR A LONG PERIOD .I HAVE AN ATTY DEALING WITH MY JOB BUT I FELL LIKE GIVING UP. ADRIAN OUINT CALL ME pickstands@... wrote: Hi Perky Deb!, and Tracie, and our very own "Deb"... and, of course, everyone else in the group ... whom I just read has increased 100+ members since I've joined!?!?!?!?!?\ ... to over 400?!?!?! members!~!!!!! (?!?!?!? meaning ... "hey, what the H*ll is going on hear?!?! ... how come we have sooooo many new members so suddenly?!? ... Are there really so many people who have "neuro"sarc vs. "sarc"? ... I actually suspected that anyone dx'ed with sarcoid could so very easily be dx'ed with neuro or

multi-system sarcoid. ... I guess because it was so easy for me to become one.) Anyway, Perky Deb ... I am so sorry you are having these difficulties in your life with regard to your senses. As Tracie has asked, ... do you have any type of confirmation of sarcoid in your body? ... i.e., biopsy anywhere? I ask for many, many reasons. Obviously, the most important ... your treatment. And there is Disability and SSI. And as you describe ... you have so little support as you have not lost (yet at least) lost your hair, and have no scars, etc. (although many of us do have the "skin" scars and "mediastinoscopy" scars (lung biopsy). I haven't written to the group in so very long ... not because I haven't wanted to, because I have missed everyone so very much, but because my hands and arms, if not my

brain, have not allowed me to do so. I am having great difficulty in writing this in fact. I try to type a ":" and instead type in a "hard carriage return". etc., etc., etc. Anyway, I am very glad to meet you and soooooooo understand your depression and lonlieness in that you have no one to talk with who can actually "understand" you. If you (or anyone!) wants to speak with me verbally over the phone, please e-mail me privately at pickstands (AT) aol (DOT) com ... I would be more than happy to give you my phone number ... I so yearn to talk to people ... I had the privilege of working with 5000 people during my working years ... and so miss talking...so very, very much. This time of year is especially difficult for me ... and my depression is hitting hard ... fast. So, Perky Deb (which is what I will pray for you to be!) ... and to all ... feel free to e-mail me privately for my phone number ... and for the moderators or members who may already have it ... I would so LOVE to hear from you ... especially now!!! and, if you happen to have a Verizon cell phone, we can talk for free!!! Love, hugs, prayers, and kisses to all!!!, Joan In a message dated 9/12/2006 1:21:56 A.M. Eastern Standard Time, tiodaat (AT) aol (DOT) com writes: Hi Deb,Well you've come to the right place. We have lots of ears, and some can still hear stuff. I totally understand the frustration of being told that "you're just depressed" when you know there's something else going on. and yeah, when you don't have a cast, or that dead chemo look, or a scar to show what 's happening-- it's hard for others to figure out that you are sick. There is a booklet that we've all found helpful-- It's the BUT YOU LOOK GREAT! from Invisible Disabilities Advocate. You can read the first chapter online at their site. The address is in our LINKS. (Scroll down to the bottom section of this and every email and you'll see the LINKS connection.)What makes them think you have sarcoidosis? I know that the photosensitivity (uveitis and iritis) is horrible. It sounds like you've not had a biopsy that shows what's going on? I

do hope you're seeing an OPHTHALMOLOGIST (md) and not an OPTOMETRIST (OD). tHIS IS serious stuff with your eyes, and needs agressive treatment with both predforte drops and homatropine or another eye drop to keep the eyes dilated. This can save your vision and keep you from an acute glaucoma attack.Much of the loss of taste, smell and hearing is the cranial nerves 6, 7 and 8. any inflammation, whether it's granulomas or vasculitis (swelling of the blood vessels) that puts pressure on those nerves can create these problems. Steroids only work so far-- take them away, when you have multi-system involvement, and your whole body goes into withdrawal. The pain of the withdrawal from steroids means that you're going down to quickly. If you've been on them for a couple of years-- your adrenals don't know how to produce cortisol, and they have to wake back up. We normally produce about 15mg of cortisol daily-- so if they put you

on 60mg a day-- then it can take months to a year or more to wean off.The adrenals also control heart rate, blood pressure, the fight or flight reaction, as well as work with the other glands to produce hormones-- so yeah, if any of the glands (pitutary, hypothalmus, thyroid) get out of whack-- then you have all these symptoms. as far as the depression-- if you are in pain-- and it sounds like you are- then your sleep patterns are being disrupted. This throws off the seratonin and norepinephrine levels, and depression sets in. Then the depression can cause pain and anxiety, as can not knowing what is happening to you, and you are now in a pain/depression cycle. I know that adding all this, having kids leave home, losing friendships, all take a toll. A huge toll. However, you are not alone. We have 400+ people that are all in various stages of diagnosis. So the information we have gleaned is incredible,

and we are willing to share and answer questions. Just ask-- that way we can pinpoint what you need addressed, and go from there.We don't have any MD's on this site. We're all in this and learning as we go. We've found that our information on sarcoidosis is generally much more progressed that what our MD's have. So feel free to use the LINKS and print out the articles to take with you to your MD's. You'll find that by empowering yourself and being proactive in your care-- that you will feel better. (and you'll scare the crap out of your MD's--which can be cause for celebration--ours, not theirs.) It may also take awhile for them to put their egos down, and work with you. If they can't do that-- find one who will. Do know that all our Moderators and Owners have this disease, and that we will try to make sure and answer your posts as quickly as possible, but if it's a day or so-- be patient-- we are

tag-teaming out here between taking care of ourself also.Welcome to the group,TracieNS co-owner/moderator

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