Guest guest Posted May 1, 2008 Report Share Posted May 1, 2008 Oh , What a bummer. As if things weren't bad enough! I'm so sorry. It seems like life has its way of kicking us when we are down. I'm already praying for you. I'm envious of your trip. When are you leaving? Give me the dates of departure and return and I'll be praying for you the entire time. LInda k IllinoisSTEPHEN R WILSON wrote: Sher, Bruce, Beth, K, Kathie, Joy, Joyce and all interested. The board seems to have raised more questions today than I can grasp, so I'll add my own. Saw my Tacoma pulmonologist today. back on imuran my sats seem to have stabilized and pursed lip breathing some one on this board and my oximeter seems to help me control them. However I had a fever and my shakes/tremors were noticeably worse. He called my pcp and I was able to slip in late this afternoon and have sinus, ear, and throat infections. Strong antibiotics prescribed of course and even though I had seen my pcp just 2 weeks ago she also knew the shaking was worse so between the 2 doctors I now also have a clinical daignosis of Parkinson, and on a full course of drugs for that. The pcp was concerned about our cruise but I told her I was going hell or high water. I've been given some pre surgery type drugs so I can sleep again and be able(concious) to drive my three wheeler and click a camera. The levadopa should control the Parkinsons in a couple days. So life is still basically good compared to the alternative. We all have to try to keep ourselves and air family up. Steve59 from WA IPF 2006 Parkinsons 2008 K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2008 Report Share Posted May 1, 2008 Steve Sorry about the ups and downs. I strongly encourage you to see a top neurologist. I really don't think a PCP or pulmonologist or anyone else should be diagnosing Parkinsons. And, if you don't have it, often the Parkinsons meds will mimic it. Also, they sure started you at the top of the meds instead of some of the milder ones. i'm not saying you don't have it, maybe just hoping. But, I know in 2004 there was a fear I had it and it turned out to be false. I could easily see all the meds you have making it look as if you do. What makes it so tough is the fact there is no test as such, but experienced neurologists do have standard methods of attempting to isolate and determine. Just from personal experience, I caution not to buy that diagnosis too quickly. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2008 Report Share Posted May 1, 2008 Bruce, I respect your advice and will ask for a referral when I see my Doctor 2 weeks from today. Steve59 from WA IPF 2006 Parkinsons 2008 > >Reply-To: Breathe-Support >To: Breathe-Support >Subject: Re: Board up/downs today >Date: Fri, 02 May 2008 04:15:01 -0000 > > >Steve > >Sorry about the ups and downs. I strongly encourage you to see a top >neurologist. I really don't think a PCP or pulmonologist or anyone else >should be diagnosing Parkinsons. And, if you don't have it, often the >Parkinsons meds will mimic it. Also, they sure started you at the top of >the meds instead of some of the milder ones. i'm not saying you don't >have it, maybe just hoping. But, I know in 2004 there was a fear I had >it and it turned out to be false. I could easily see all the meds you >have making it look as if you do. What makes it so tough is the fact >there is no test as such, but experienced neurologists do have standard >methods of attempting to isolate and determine. Just from personal >experience, I caution not to buy that diagnosis too quickly. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2008 Report Share Posted May 2, 2008 Steve...well, as I said to Bruce....DAMNIT! I'm sorry friend there is now something else. The dx sucks but I know there are meds to control the shaking and that is a good thing for you. I can't blame you for wanting to go on the cruise! These "adventures" are so important to us. What were your drs concerns about the cruise? You mention "pre surgery type drugs"..... You are not in line literally, for surgery, are you? I don't THINK you are, just checking... How do you feel about getting a second opinion for Parkinson's??? It sure couldn't hurt. Especially with all the additional meds you'll be taking. DAMNIT! I just hate it that you have to endure so much..................! Sleeping better will make such a difference for you Steve! How are you doing w/your cpap? I made reservations for the 14th, 15th! Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Board up/downs today Sher, Bruce, Beth, K, Kathie, Joy, Joyce and all interested. The board seems to have raised more questions today than I can grasp, so I'll add my own. Saw my Tacoma pulmonologist today. back on imuran my sats seem to have stabilized and pursed lip breathing some one on this board and my oximeter seems to help me control them. However I had a fever and my shakes/tremors were noticeably worse. He called my pcp and I was able to slip in late this afternoon and have sinus, ear, and throat infections. Strong antibiotics prescribed of course and even though I had seen my pcp just 2 weeks ago she also knew the shaking was worse so between the 2 doctors I now also have a clinical daignosis of Parkinson, and on a full course of drugs for that. The pcp was concerned about our cruise but I told her I was going hell or high water. I've been given some pre surgery type drugs so I can sleep again and be able(concious) to drive my three wheeler and click a camera. The levadopa should control the Parkinsons in a couple days. So life is still basically good compared to the alternative. We all have to try to keep ourselves and air family up. Steve59 from WA IPF 2006 Parkinsons 2008 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2008 Report Share Posted May 2, 2008 Steve, I'm so sorry that you got another stinky diagnosis to deal with.....and more meds. But, let me tell you that I love your attitude! I'm so glad that you are going forward with the cruise. You will be sick either place so why not be sick having fun. Besides, I think sitting out on a warm deck with the sound of the ocean would be wonderful for you. Better than holed up in a house. Go for it and have a blast! Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2008 Report Share Posted May 2, 2008 You more than anyone is due for a turn for the better in health. Thank you for your good wishes and same back at you. Steve59 from WA IPF 2006 Parkinsons 2008 Reply-To: Breathe-Support To: Breathe-Support Subject: Re: Board up/downs todayDate: Fri, 02 May 2008 23:47:20 -0000 Steve, I'm so sorry that you got another stinky diagnosis to deal with.....and more meds. But, let me tell you that I love your attitude! I'm so glad that you are going forward with the cruise. You will be sick either place so why not be sick having fun. Besides, I think sitting out on a warm deck with the sound of the ocean would be wonderful for you. Better than holed up in a house. Go for it and have a blast! Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 Quote Link to comment Share on other sites More sharing options...
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