Guest guest Posted March 23, 2010 Report Share Posted March 23, 2010 Hi Marla, I love your process of pilot and copilot with the physician. Priceless and perfect. Go team. Cheers, Darrin To: Neurosarcoidosis From: mebramer@...Date: Tue, 23 Mar 2010 10:13:14 -0600Subject: Re: Re: Eyes? New Member There is a lot of truth to sticking to one doc. I started with a Pulmonologist first, had lung sx, he sent me to a neuro I didn't care for, and when I told him I did not want to go to her, he said OK. I've been with this one doc for the past almost 16 years since dx. I know have a good Neuro, a good Rhematologist, but my main doc is the Plum, and my lungs are under control, the neuro is the worse. This is how is started. With the help of all these awesome people here, I would find information, that we now have in the archives and easy to get to. I would take in article and experience from others to him, he would read them, and TOGETHER we learned how to treat and live with Sarcoidosis, so if your doc does not seem to know what he/she is talking about, it's because they don't really know anything about Sarc, and YOU need to be educated together, then you create this bond too. I go to my Rhuemy for my Remicade, but my Plumy takes care of all my meds, and including the Remicade. Learn together, the doctor patient relationship is so much stronger that way. WE both found out the hard way that shuffling around is just too much for both the patient and the doctor. I even spent some time at National Jewish in Denver! Now I go to all local doctors in a fairly small town. I hope this is helpful, I just came off Remicade, so am doing better, the week before and a few days after are very difficult for me. and I know I don't post a lot. I see Tracie gets back to you all faster then I can and she is a Sarcoid specialist of the best kind, the patient kind. But I have seen this in a lot of posts, what doc to see, should I change, what type. That varies for everyone, find one you can talk to, and listens and you feel good about, then educate them:) in an easy way, print off articles, and even posts and then let him read them and decided for themselves. I wish the best for all of you, and know you are all in my prayers and thoughts. Marla On Tue, Mar 23, 2010 at 7:43 AM, bill cumbers <dmhs1666 (AT) yahoo (DOT) com> wrote: If you like the doc then stick with him/her. It makes for less hassles from an admin perspective and all the data collected is in one spot. Just a thought...but the relationship with the doc is most important From: Judy <goldendog55 (AT) gmail (DOT) com> Subject: Re: Eyes? New MemberTo: Neurosarcoidosis Date: Sunday, March 21, 2010, 7:50 PM I had one person answer a few questions. Has anyone else had similar situations? Also, my internal med Dr. says I can't have this disease. She says I just have hyperparathyroidism , because all my calcium levels are so high. The Dr. diagnosing me is at the Universtiy of Washington med. center. Would it be better to just be treated there entirely for this? The drive is 2 1/2 hours each way!>> I have a couple of questions. I am currently going through the diagnosis> process even though I have been sick over 25 years with this. I am now 54> years old.> #1. At times, I can see so-so, and other times everything is too blurry to> see anything, except colors. With medication, can this get better? I can no> longer read and my eyes always hurt and are dry.> #2. Could someone tell me something about bone sarcoidosis. The bones in my> feet and lower legs are breaking without even falling or bumping them. Does> this ever get better?> #3. I am in extreme pain due to the swelling in my parotid glands. How> often does this affect people? For over 2 years, I have been looking like a> chipmunk. I've also had to have another tooth pulled, due to abcess.> #4. I get very sick being outside on a cloudy day for even 15 minutes.> When I go inside, it feels like the inisides of my eyes feel sunburnt and my> skin turns bright red. I also have a temperature regulation problem and I> am always hot, and then skin turns bright red. Is this common?> #5. I have been on disability for 20 years and in Dec., Social Security> decided I am not disabled and I have been committing fraud, because the Dr.> reports vary so much. The diagnosis should help in my case, I hope? Is> sarcoidosis considered a disabling condition?> > It seems that almost every organ is already affected! During this whole> time, all of the Drs. would say that there is something wrong with me, but> they didn't know what, so just told me that I had a lot of medical> problems. Its so nice to be able to hope for a diagnosis!> Thank you for your help! I just joined today and this all makes me very> worried! Judy> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2010 Report Share Posted March 24, 2010 Hi Judy, I went blind in my right eye before my neurosarcoidosis was diagnosed as my first neurologist mis-diagnosed me with optical neuritis and said that steroid treatment would make no difference in the long run. Had I been treated with steroids there is a good chance that I would have kept my sight as the optic nerve would probably not have atrophied. The visual symptoms you are discribing are different from the experience I had. My sight slowly dimmed - like turning a dimmer down on a light. Sorry to hear about your ongoing troubles and hope you get some answers soon. Jay > > > > I have a couple of questions. I am currently going through the diagnosis > > process even though I have been sick over 25 years with this. I am now 54 > > years old. > > #1. At times, I can see so-so, and other times everything is too blurry to > > see anything, except colors. With medication, can this get better? I can no > > longer read and my eyes always hurt and are dry. > > #2. Could someone tell me something about bone sarcoidosis. The bones in my > > feet and lower legs are breaking without even falling or bumping them. Does > > this ever get better? > > #3. I am in extreme pain due to the swelling in my parotid glands. How > > often does this affect people? For over 2 years, I have been looking like a > > chipmunk. I've also had to have another tooth pulled, due to abcess. > > #4. I get very sick being outside on a cloudy day for even 15 minutes. > > When I go inside, it feels like the inisides of my eyes feel sunburnt and my > > skin turns bright red. I also have a temperature regulation problem and I > > am always hot, and then skin turns bright red. Is this common? > > #5. I have been on disability for 20 years and in Dec., Social Security > > decided I am not disabled and I have been committing fraud, because the Dr. > > reports vary so much. The diagnosis should help in my case, I hope? Is > > sarcoidosis considered a disabling condition? > > > > It seems that almost every organ is already affected! During this whole > > time, all of the Drs. would say that there is something wrong with me, but > > they didn't know what, so just told me that I had a lot of medical > > problems. Its so nice to be able to hope for a diagnosis! > > Thank you for your help! I just joined today and this all makes me very > > worried! Judy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2010 Report Share Posted March 24, 2010 I agree with the dimming feeling, whenever I have methylpred I tell everyone its like someone has switched a light on. > > > > > > I have a couple of questions. I am currently going through the diagnosis > > > process even though I have been sick over 25 years with this. I am now 54 > > > years old. > > > #1. At times, I can see so-so, and other times everything is too blurry to > > > see anything, except colors. With medication, can this get better? I can no > > > longer read and my eyes always hurt and are dry. > > > #2. Could someone tell me something about bone sarcoidosis. The bones in my > > > feet and lower legs are breaking without even falling or bumping them. Does > > > this ever get better? > > > #3. I am in extreme pain due to the swelling in my parotid glands. How > > > often does this affect people? For over 2 years, I have been looking like a > > > chipmunk. I've also had to have another tooth pulled, due to abcess. > > > #4. I get very sick being outside on a cloudy day for even 15 minutes. > > > When I go inside, it feels like the inisides of my eyes feel sunburnt and my > > > skin turns bright red. I also have a temperature regulation problem and I > > > am always hot, and then skin turns bright red. Is this common? > > > #5. I have been on disability for 20 years and in Dec., Social Security > > > decided I am not disabled and I have been committing fraud, because the Dr. > > > reports vary so much. The diagnosis should help in my case, I hope? Is > > > sarcoidosis considered a disabling condition? > > > > > > It seems that almost every organ is already affected! During this whole > > > time, all of the Drs. would say that there is something wrong with me, but > > > they didn't know what, so just told me that I had a lot of medical > > > problems. Its so nice to be able to hope for a diagnosis! > > > Thank you for your help! I just joined today and this all makes me very > > > worried! Judy > > > > > > Quote Link to comment Share on other sites More sharing options...
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