Guest guest Posted March 9, 2007 Report Share Posted March 9, 2007 Saw the new Rhuemo today, Dr. Wu, she was fantastic! Now I will admit that I'm pretty sure she could get a job as a pro wrestler even though she was a tiny little thing, she took hold of my considerable bulk and twisted, turned, poked, prodded and generally caused pain and suffering throughout my world within the first fifteen minutes in her office, but it was alllllll worth it. (more worth it now after several pain pills and a long sit in a hot tub). Ignoring my GP's brilliant diagnosis of " nuttin wrong wit chu but a hole in yer hade " , she confirmed the Neuro's diagnosis of 'systemic sarcoid' affecting the periferal (ok so my spelling sucks, it's not my fault, there sumptin wrong wit my hade!) nerves, pulmo sarcoid, skin sarcoid, sarcoid related arthritis, costocondritis and fibromialgia. She also agrees with the Neuro that I likely have sleep apnea and I saw the new pulmo guy about being tested next month for that! Now I wait for a week or so while she mulls over all the old tests to verify that Methotrexate is the correct course of action!!!!! YEAHHHHHHHHHHHHHHH!!!! Finally somthing is getting done, (ok so I'm a little overanxious after only 15 years of messing around without anything more than prednisone and pain pills), to say Liz and I are happy with todays results would be a tremendous understatement!!!!!! Never give up! AFter all 15 years isn't exactly a lifetime, it just may seem like it! Stu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2007 Report Share Posted March 10, 2007 Stu, This is wonderful! I'm sure that you'll get the help you need to get started on an immunosuppresant that will give you some relief. I know that the MTX was so helpful for the arthritis portion of the sarc, and to combine it with others (Imuran, Plaquenil, Enbrel, Humira or Remicade) has worked well for me. It does take a combination, and you have to do it one med at a time- so that you know what is helping and what doesn't help. Give Liz a hug, and enjoy that hottub! Blessings, Tracie ************************************** AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2007 Report Share Posted March 10, 2007 Stu, you are too funny! Good to still have a sense of humor after 15 years of this. I still haven't seen a rheumy myself. My sarc seems to only be affecting nerves so neurologists are the docs they send me too, although a rheumy is consulting with the dr that is overseeing my remicade treatments. I wonder if finding a good rheumy is something I should be pressing for. I live in rural Canada. There wouldn't be that kind of doctor nearby. It would require a lot of research and persistence. How does one know which kind of dr to go to when we have so many weird symptoms? - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2007 Report Share Posted March 10, 2007 Stu, That is wonderful news; yes staying the course is always good. 15 years you are a patient person for sure! Good luck on your treatment!! Marla Bramer " Faith sees the invisible, believes the incredible and receives the impossible " From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of lizzyandstu Sent: Friday, March 09, 2007 3:09 PM To: Neurosarcoidosis Subject: Hey guys: Saw the new Rhuemo today, Dr. Wu, she was fantastic! Now I will admit that I'm pretty sure she could get a job as a pro wrestler even though she was a tiny little thing, she took hold of my considerable bulk and twisted, turned, poked, prodded and generally caused pain and suffering throughout my world within the first fifteen minutes in her office, but it was alllllll worth it. (more worth it now after several pain pills and a long sit in a hot tub). Ignoring my GP's brilliant diagnosis of " nuttin wrong wit chu but a hole in yer hade " , she confirmed the Neuro's diagnosis of 'systemic sarcoid' affecting the periferal (ok so my spelling sucks, it's not my fault, there sumptin wrong wit my hade!) nerves, pulmo sarcoid, skin sarcoid, sarcoid related arthritis, costocondritis and fibromialgia. She also agrees with the Neuro that I likely have sleep apnea and I saw the new pulmo guy about being tested next month for that! Now I wait for a week or so while she mulls over all the old tests to verify that Methotrexate is the correct course of action!!!!! YEAHHHHHHHHHHHHHHH!!!! Finally somthing is getting done, (ok so I'm a little overanxious after only 15 years of messing around without anything more than prednisone and pain pills), to say Liz and I are happy with todays results would be a tremendous understatement!!!!!! Never give up! AFter all 15 years isn't exactly a lifetime, it just may seem like it! Stu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2007 Report Share Posted March 11, 2007 I feel so good for you Stu. Its only been 4 yrs for me but it sounds like you are a lot more ill than I am. Congratulations on finding dr's. who finally care and are going to do something about your case. It must feel wonderful! Most doctors are awful . You get your hopes up, make one visit and they discourage you even more. You never end up going back cause they say there's nothing wrong. You are SOOOO lucky. Good luck and be healthy. Debbie T. Co-Moderatorlizzyandstu wrote: Saw the new Rhuemo today, Dr. Wu, she was fantastic! Now I will admitthat I'm pretty sure she could get a job as a pro wrestler even thoughshe was a tiny little thing, she took hold of my considerable bulk andtwisted, turned, poked, prodded and generally caused pain andsuffering throughout my world within the first fifteen minutes in heroffice, but it was alllllll worth it. (more worth it now afterseveral pain pills and a long sit in a hot tub).Ignoring my GP's brilliant diagnosis of "nuttin wrong wit chu but ahole in yer hade", she confirmed the Neuro's diagnosis of 'systemicsarcoid' affecting the periferal (ok so my spelling sucks, it's not myfault, there sumptin wrong wit my hade!) nerves, pulmo sarcoid, skinsarcoid, sarcoid related arthritis, costocondritis and fibromialgia. She also agrees with the Neuro that I likely have sleep apnea and Isaw the new pulmo guy about being tested next month for that! Now Iwait for a week or so while she mulls over all the old tests to verifythat Methotrexate is the correct course of action!!!!! YEAHHHHHHHHHHHHHHH!!!! Finally somthing is getting done, (ok so I'm alittle overanxious after only 15 years of messing around withoutanything more than prednisone and pain pills), to say Liz and I arehappy with todays results would be a tremendous understatement!!!!!!Never give up! AFter all 15 years isn't exactly a lifetime, it justmay seem like it!Stu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2007 Report Share Posted March 11, 2007 , Does the Remicade help with your neuro symptoms and what are you neuro sx’s? if you don’t mind me Asking? Marla Bramer " Faith sees the invisible, believes the incredible and receives the impossible " From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of wendy_cidp Sent: Saturday, March 10, 2007 3:55 PM To: Neurosarcoidosis Subject: Re: Hey guys: Stu, you are too funny! Good to still have a sense of humor after 15 years of this. I still haven't seen a rheumy myself. My sarc seems to only be affecting nerves so neurologists are the docs they send me too, although a rheumy is consulting with the dr that is overseeing my remicade treatments. I wonder if finding a good rheumy is something I should be pressing for. I live in rural Canada. There wouldn't be that kind of doctor nearby. It would require a lot of research and persistence. How does one know which kind of dr to go to when we have so many weird symptoms? - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2007 Report Share Posted March 12, 2007 Ignoring my GP's brilliant diagnosis of "nuttin wrong wit chu but ahole in yer hade", she confirmed the Neuro's diagnosis of 'systemicsarcoid' affecting the periferal (ok so my spelling sucks, it's not myfault, there sumptin wrong wit my hade!) Stu, this cracked me up! If you don't mind, I'm going to print it out & tape it on my desk. Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Hey guys:Date: Fri, 09 Mar 2007 22:08:47 -0000 Saw the new Rhuemo today, Dr. Wu, she was fantastic! Now I will admitthat I'm pretty sure she could get a job as a pro wrestler even thoughshe was a tiny little thing, she took hold of my considerable bulk andtwisted, turned, poked, prodded and generally caused pain andsuffering throughout my world within the first fifteen minutes in heroffice, but it was alllllll worth it. (more worth it now afterseveral pain pills and a long sit in a hot tub).Ignoring my GP's brilliant diagnosis of "nuttin wrong wit chu but ahole in yer hade", she confirmed the Neuro's diagnosis of 'systemicsarcoid' affecting the periferal (ok so my spelling sucks, it's not myfault, there sumptin wrong wit my hade!) nerves, pulmo sarcoid, skinsarcoid, sarcoid related arthritis, costocondritis and fibromialgia. She also agrees with the Neuro that I likely have sleep apnea and Isaw the new pulmo guy about being tested next month for that! Now Iwait for a week or so while she mulls over all the old tests to verifythat Methotrexate is the correct course of action!!!!! YEAHHHHHHHHHHHHHHH!!!! Finally somthing is getting done, (ok so I'm alittle overanxious after only 15 years of messing around withoutanything more than prednisone and pain pills), to say Liz and I arehappy with todays results would be a tremendous understatement!!!!!!Never give up! AFter all 15 years isn't exactly a lifetime, it justmay seem like it!Stu Play Flexicon: the crossword game that feeds your brain. PLAY now for FREE. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2007 Report Share Posted March 13, 2007 We're still not sure how much the remicade is working. I am tapering off prednisone. If the remicade is working I should be able to get off the steroids with no flare-ups. My symptoms started with Bells Palsy which over a 7 year period I have gotten 4 times. In 2004 the right side of my throat became paralyzed, unable to speak or swallow solids for 6 months. Last spring the balance mechanism in my right ear was paralyzed. Terrible vertigo, unable to hold up my head, eat, walk, etc... They have determined it is demyelination of the outer layers of 5 cranial nerves. They eventually regenerate (6-12 months) but are still unsure as to the cause. They suspect autoimmune disease, probably sarcoidosis but they also suspect CIDP -- that I have a disease process which is causing both problems. Quite confusing to me, really. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2007 Report Share Posted March 16, 2007 Glad you got a good report.............Connielizzyandstu wrote: Saw the new Rhuemo today, Dr. Wu, she was fantastic! Now I will admitthat I'm pretty sure she could get a job as a pro wrestler even thoughshe was a tiny little thing, she took hold of my considerable bulk andtwisted, turned, poked, prodded and generally caused pain andsuffering throughout my world within the first fifteen minutes in heroffice, but it was alllllll worth it. (more worth it now afterseveral pain pills and a long sit in a hot tub).Ignoring my GP's brilliant diagnosis of "nuttin wrong wit chu but ahole in yer hade", she confirmed the Neuro's diagnosis of 'systemicsarcoid' affecting the periferal (ok so my spelling sucks, it's not myfault, there sumptin wrong wit my hade!) nerves, pulmo sarcoid, skinsarcoid, sarcoid related arthritis, costocondritis and fibromialgia. She also agrees with the Neuro that I likely have sleep apnea and Isaw the new pulmo guy about being tested next month for that! Now Iwait for a week or so while she mulls over all the old tests to verifythat Methotrexate is the correct course of action!!!!! YEAHHHHHHHHHHHHHHH!!!! Finally somthing is getting done, (ok so I'm alittle overanxious after only 15 years of messing around withoutanything more than prednisone and pain pills), to say Liz and I arehappy with todays results would be a tremendous understatement!!!!!!Never give up! AFter all 15 years isn't exactly a lifetime, it justmay seem like it!Stu Now that's room service! Choose from over 150,000 hotels in 45,000 destinations on Yahoo! Travel to find your fit. Quote Link to comment Share on other sites More sharing options...
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