RE: uh-oh

[Guest guest]

Marla, Thank you so much. I will go & print out the information, I have an appt with my neurologist this Thursday for the results of everything. I hope maybe he can help me figure some things out, incuding how to calm down some of the symptoms I'm having (the pain is getting on my nerves). If the sarc has gone neuro on me like I believe it has, I hope he will take over as the main physician looking after the sarc. He seems to be more knowledgeable about it and has worked in the past with a leading neurologist specializing in sarc. Keep me in your prayers, as I will you all//Connie PS Thanks for taking some of my guilt, I feel ashamed when I gripe Marla Bramer wrote: Connie, Don’t apologize for anything, we have all been, still there, or going there, so let your feelings out that is why we’re all here, for you. There’s other medications that the doctor can put you on too, besides the Pred or even Methotrxate, at the very bottom of this message you will find links that lead to a ton of information go into the archives and look up the medications then print out the information and take it to your doc. See if that doesn’t help out some. Blessings, Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Connie GriffisSent: Friday, May 19, 2006 1:04 PMTo: Neurosarcoidosis Subject: RE: uh-oh Thanks Marla, I didn't know what to ask about. My pulmonologist is a good doctor, but not the most knowledgeable about sarcoid. He has not put me on anything to replace the pred, he acts like that is

all he knows that treats it. I will ask about the other, I have got to find some kind of middle ground with what is happening with my body. I have to work as long as I can (good insurance) and the job is a 35 minute drive from my home. I know that doesn't seem like a long distance but with what's happening since I reduced the pred it feels a whole lot longer. I wish I could just crawl out of my body for about 15 minutes of relief, (as I know you all do too). I shouldn't complain, I apologize, I know there are alot of people worse off than me (forgive me Kim and all the rest of you). Take care, and thank you very much for the information Marla. ConnieMarla Bramer wrote: Connie, Is the doctor replacing the Pred. with anything? I was on pred. for over 3 years, my doctor got me off it by replacing it with methotrexate, I was able to get off the pred. very slowly but off with the Metho, so just a thought. I am so glad I got off the pred. and have done well on the metho. Something to think/talk about.

Hang in there, praying for you, Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Connie GriffisSent: Friday, May 19, 2006 8:05 AMTo: neurosarcoidosis Subject: uh-oh Guys,

I told you that I reduced the prednisone by 5 mg about a week ago. Oh gravy, life is getting ugly. It improved the swelling so that the fluid is not building up in my lungs like it was, but my spine and left leg are driving me crazy. It is hurting on the left side of my ribs, between my shoulder blades, my lower back feels like it is broken pieces of bone and my hip & knee are a mess. I didn't let my family see me, but I took a cane to go down our steps this morning, they are cement and there's 5 of them and I was afraid I would fall. I don't know if I should keep holding out on the lower dose of prednisone, or go back up to where I was. I am supposed to see my neurologist next Thursday, so maybe I should hold out where I am till I see him. I'm sorry, I don't mean to gripe, I'm just hurting like crazy right now. Thanks for your listening ears and kind hearts. You will never know how much you have been helping people like me, I do know and I appreciate you all very much. As always, Connie Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis

CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Thank you Rose, I don't like messing with my medicine, and something has got to change medicine wise. But I couldn't seem to get them to understand that the fluid in my lungs was out of control. Smothering, rales, wheezing, productive cough, waking up gasping for breath. The diuretic only calmed it down for a few hours, and it came right back; not go mention the only time the diuretic worked was at night when i laid down, so no sleep all night. My heart has a real temper if I miss alot of sleep. It makes the dr's mad as the dickens at times, but sometimes if I didn't figure out my own business, I'd be up "butch creek" without a paddle. As always .....you are appreciated////ConnieRose wrote: Connie, of course we don't recognize tapering Pred by yourself, but since you've gone this far, you might try going up by just a couple of milligrams to see if that relieves the pain without a return of the swelling. If you have tablets that can be split, use a pill splitter for more accuracy; they are only a couple of bucks. Ramblin' Rose Moderator From: Connie Griffis

Reply-To: Neurosarcoidosis To: "neurosarcoidosis " <neurosarcoidosis >Subject: uh-ohDate: Fri, 19 May 2006 07:04:37 -0700 (PDT) Guys, I told you that I reduced the prednisone by 5 mg about a week ago. Oh gravy, life is getting ugly. It improved the swelling so that the fluid is not building up in my lungs like it was, but my spine and left leg are driving me crazy. It is hurting on the left side of my ribs, between my shoulder blades, my lower back feels like it is broken pieces of bone and my hip & knee are a mess. I didn't let my family see me, but I took a cane to go down our steps this morning, they are cement and there's 5 of them and I was afraid I would fall. I don't know if I should keep holding out on the lower dose of prednisone, or go back up to where I was. I

am supposed to see my neurologist next Thursday, so maybe I should hold out where I am till I see him. I'm sorry, I don't mean to gripe, I'm just hurting like crazy right now. Thanks for your listening ears and kind hearts. You will never know how much you have been helping people like me, I do know and I appreciate you all very much. As always, Connie Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers

Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Thank you Rose, I don't like messing with my medicine, and something has got to change medicine wise. But I couldn't seem to get them to understand that the fluid in my lungs was out of control. Smothering, rales, wheezing, productive cough, waking up gasping for breath. The diuretic only calmed it down for a few hours, and it came right back; not go mention the only time the diuretic worked was at night when i laid down, so no sleep all night. My heart has a real temper if I miss alot of sleep. It makes the dr's mad as the dickens at times, but sometimes if I didn't figure out my own business, I'd be up "butch creek" without a paddle. As always .....you are appreciated////ConnieRose wrote: Connie, of course we don't recognize tapering Pred by yourself, but since you've gone this far, you might try going up by just a couple of milligrams to see if that relieves the pain without a return of the swelling. If you have tablets that can be split, use a pill splitter for more accuracy; they are only a couple of bucks. Ramblin' Rose Moderator From: Connie Griffis

Reply-To: Neurosarcoidosis To: "neurosarcoidosis " <neurosarcoidosis >Subject: uh-ohDate: Fri, 19 May 2006 07:04:37 -0700 (PDT) Guys, I told you that I reduced the prednisone by 5 mg about a week ago. Oh gravy, life is getting ugly. It improved the swelling so that the fluid is not building up in my lungs like it was, but my spine and left leg are driving me crazy. It is hurting on the left side of my ribs, between my shoulder blades, my lower back feels like it is broken pieces of bone and my hip & knee are a mess. I didn't let my family see me, but I took a cane to go down our steps this morning, they are cement and there's 5 of them and I was afraid I would fall. I don't know if I should keep holding out on the lower dose of prednisone, or go back up to where I was. I

am supposed to see my neurologist next Thursday, so maybe I should hold out where I am till I see him. I'm sorry, I don't mean to gripe, I'm just hurting like crazy right now. Thanks for your listening ears and kind hearts. You will never know how much you have been helping people like me, I do know and I appreciate you all very much. As always, Connie Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers

Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database