Guest guest Posted November 21, 2009 Report Share Posted November 21, 2009 Well said & so true. I have seen how much we have lost here, but somehow we keep going. If I stopped to wallow in what we have lost I would be absolutey useless to help . We try to find things to do that are not over bearing and enjoyable as well. Matt From: tracie feldhaus <tiodaat2001@ yahoo.com>Subject: Re: diagnosisTo: Neurosarcoidosis@ yahoogroups. comDate: Thursday, November 19, 2009, 1:32 AM Helen, Where you a smoker? Buggers-- See if the pulm will allow you into a pulmonary rehab class, where you can learn to breath deeply and correctly, so that the combination of Restrictive Obstructlve Pulmonary Disease (ROPD)-- AKA sarc; and COPD Chronic Obstructive; doesn't progress to even less lung volume. That wonderful exercise where they have us blow out past when we feel our lungs have emptied-- is what gets the carbon dioxide out of the lungs-- (that is what causes the extremity numbness alot of the time) and by doing that-- and starting a VERY SLOW exercise program under supervision- - you can get stronger. It may be time also to consider supplemental oxygen. I know how much it helps me-- You can look in the MESSAGE ARCHIVES and search by Pulmonary Rehab-- and you'll find a bunch of discussion on this issue. Take care, Tracie NS Co-owner/moderator From: Helen <hmwalker9 (AT) yahoo (DOT) com>To: Neurosarcoidosis@ yahoogroups. comSent: Wed, November 18, 2009 4:44:14 PMSubject: diagnosis MY LUNG DOCTOR'S NURSE CALL ME TODAY TO GIVE ME THE RESULTS OF MY CAT SCAN.SHE INFORMED ME THAT I HAVE EMPHYSEMA AS WELL AS LUNG SARCORDOSIS. I can't see my lung doctor until December the 17TH.I NOW HAVE TWO DISEASES THAT DOESN''T HAVE A CURE. HELEN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2009 Report Share Posted November 23, 2009 Here I am trying to catch up on emails again, I just wanted to assure you that, once off the Pred. the puffiness does go away, but it's hard to get the weight off, if you can walk, walk 30 mins every other day, I can only walk 10 mins on the treadmill, 15 on a good day. but if you can I would start that! Good luck. Marla Wow! I can't believe how similar our experiences were...I was on chemo for several months because I was told the lesion was cancer, and that it was un-biopsy-able (word??!) because it is inside the spinal cord directly under my brain stem. Then, after finding shadows on my hip bone, and two in my lungs, they wanted to do bone biopsy, but said I was too immune-compromised to survive it(and get this...it was because I was on 100 MG a day of prednisone!!)...Just what DO all those docs know, anyway!? (hahaaha...you just gotta laugh, you know?) Hey...and what's with all the steriod puffiness and weight gain? Does it EVER go away??? From: mjcv29a@... Subject: Re: diagnosisTo: Neurosarcoidosis Date: Thursday, November 19, 2009, 3:09 PM Helen, I'm so sorry but if ever there were people that understand what your going through, here we are. I had a similar story as Tracie, i was told that it was 95% Non Hodkins (which my Father passed away from the year before) or Lung cancer and less then 5% chance of Sarcoid from the Cat Scan and then after the PEAT Scan I was told it was 100% Cancer. For 3 weeks I thought i had the same Cancer my Father died from less then 12 months earlier (it took me 8 months to get back into a semi-fairly life and then BOOM I'm dying. I have thought about this a million times in the last 3 years-- A Cancer that has a high success rate or an Auto immune that has no cure at all. you know what? I would take the Sarcoid every time, The word " Cancer " is a Cancer, for the 3 weeks i thought I had it I was always scared, shaking, crying and miserable. It was a relief not to have Cancer. Although they told me 3 times since then that the CT Scan looked Cancer but I don't take it seriously anymore. Anyway, we all know how hopeless it can feel but i always think of the old Confusous saying " I cried because I had no shoes, until I met a man who had no feet! " G-d Bless and we're here for you Mitch diagnosis MY LUNG DOCTOR'S NURSE CALL ME TODAY TO GIVE ME THE RESULTS OF MY CAT SCAN.SHE INFORMED ME THAT I HAVE EMPHYSEMA AS WELL AS LUNG SARCORDOSIS. I can't see my lung doctor until December the 17TH.I NOW HAVE TWO DISEASES THAT DOESN''T HAVE A CURE. HELEN Quote Link to comment Share on other sites More sharing options...
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