Guest guest Posted September 13, 2003 Report Share Posted September 13, 2003 Meant for the list...... ****************************** In a message dated 9/13/2003 10:46:11 AM Eastern Daylight Time, Tdevil1023@... writes: > Hi > My name is Kim Weigel, and I had the surgery at Beth Israel on 12/17/99. I > had originally lost 120 lbs, and have since regained 86 lbs. I am looking to > > start over and improve my life, health and weight. Thanks Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2003 Report Share Posted September 13, 2003 Hi Kim. Welcome to the group. Can you tell us a little more about what you have been eating and which surgery you had? How about exercise? It is a lot easier to assist people when we know more about their habits. Lori Owen - Denton, Texas SRVG 7/16/01 Dr. Ritter/Dr. Bryce > In a message dated 9/13/2003 10:46:11 AM Eastern Daylight Time, > Tdevil1023@... writes: > > Hi > > My name is Kim Weigel, and I had the surgery at Beth Israel on > 12/17/99. I > > had originally lost 120 lbs, and have since regained 86 lbs. I am > looking to > > > > start over and improve my life, health and weight. Thanks Kim > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2010 Report Share Posted October 30, 2010 Janet, Yes many of your symptoms sound familiar, in fact I have many of the same, numbness, tingling, I started with just the left side, but now all over, except left still worse. The bumps you get in your mouth that come and go, that too, I have bumps all over my body, the ones on my legs never go away, but the ones in my mouth and on my face come and go, I find if I'm real tired more of them appear, when I get enough sleep not so bad. I don't know where you live, but you need to get in and get some treatment/diagnosis, I am now at the point where I have trouble walking, if I have to walk too much, I use a cane, and sometimes a wheelchair. I'm on 3 drugs to depress my over active Immune system, which is what Sarcoidosis is, It's holding me where I am, not much better, but not worse. The longer you wait to see a Dr. the worse you will get, and there are some things that just won't come back. If you scroll to the bottom of the email, you will see a link to emails, and to information that can help you, some of the information you can print and take to a doctor, to say why you think you might have Sarcoidosis. And name of numbers of Doctors, but since I don't know where you live, not sure how helpful those will be. However they might be others here at the site that live where you do or close and can help you out. I'm sorry you might have this disease, but you found a wonderful, caring family here dealing with the same things you are dealing with, so feel free to ask questions, if someone doesn't get back to you right away, it's because we are all sick here, and we have good and bad days. Look forward to helping you Janet. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:) Hi there, My name is Janet and I think I might be a sarkie. I was 42, fit and healthy except for mild asthma, when I was hit suddenly last May with what we thought was carpal tunnel - shooting pains down my right forearm and incredible pain every time I moved my thumb. Then the left hand started in. I took large doses of NSAIDs and went to a hand therapist for a few months. But I also had a horribly painful tennis elbow thing going on, which really threw the diagnosis for a loop. Then in July my feet got tingly. And my face went numb and tingly on both sides. And the pain got worse. All tests, including EMG and MRIs, have been negative for everything except a herniated disc in my neck that isn't bothering me. (And I have low vit. D, no surprise.) I made my GP do a chest x-ray last week; that was negative as well. Ditto for eye exam. Lately I've been waiting on a referral to a larger hospital (my local neurologist says " nothing explains my symptoms " ) and doing a lot of research. New things are freaking me out, like the purplish-black spots that appear on my palate and the inside of my cheeks, then disappear. The facial pain, which in the beginning only happened every 2-3 days, is now almost constant (I do have one good hour in the morning). Lyrica is helping lots but I just had to increase the dose to stay sane. The " paresthesia " is no longer " peripheral " - it's up my back and in my butt. Everything is worse on the left side. I'm on a waiting list to get in to an ENT to get one of the oral spots biopsied, but since the spots aren't there every day I don't know when that's going to happen. There aren't a lot of known disorders that cause bilateral facial pain like this. Peripheral neurosarc makes the most sense. Funny thing is, my hands, which were so painful I couldn't work or cook or tie my shoes in the beginning, are now much better. I can't knit or spin every day like I used to, but I can type and work again, which has made the rest of this stuff much more bearable. I think this partial recovery may have something to do with the steroid patches the hand therapist used on my thumbs. Funny, as I write this, I'm noticing small, subcutaneous bumps on the back of my hands. I guess I have good reason to be paranoid at this point. So, the upshot is, I think I have a rare disease that needs to be treated pronto before I lose more nerve function, and there are no doctors in this part of the country (even at the hospital I've been referred to) who know how to diagnose and treat said rare disease. But I need a diagnosis before I can get into a specialist who knows what they're doing. SO, the strategy at this point is to hold a local doctor hostage until I can get a biopsy of my mouth so that somebody else in another part of the country will take me seriously. Make sense? I would welcome any other ideas! Thanks for being there. J Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2010 Report Share Posted October 31, 2010 Janet, where do you live? Are you near a major medical center? Some (not all) have sarc clinics or doctors interested in sarc. Is it possible to get another neurology opinion, or better yet, immunology. Immunologists are often the most knowledgeable about sarc. Have they checked an ACE level? That's not going to say "yep, it's sarc," but it's another piece of the puzzle. You sure sound like a possible candidate for this very exclusive club that nobody wants to belong to! I'm sorry you are having so many troubling symptoms, but the improvement in your hands has to be a blessing. This group will provide support, suggestions, encouragement, tips for dealing with doctors & planning for appts. Just let us know where you are located, and we may be able to offer some ideas for evaluation. You are correct in wanting this condition diagnosed & treated before further damage occurs. Many doctors think that we are nuts or hypochondriacs because we report so many seemingly unrelated symptoms. I saw a doctor on TV recently who said that doctors are either lumpers or splitters. Splitters tend to view each symptom separately--you may even see a different "ologist" for each symptom. Lumpers look for a way to connect all or most of the symptoms. You definitely need a lumper. Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 > To: Neurosarcoidosis > Date: Sat, 30 Oct 2010 18:46:26 +0000> Subject: intro> > Hi there,> > My name is Janet and I think I might be a sarkie. I was 42, fit and healthy except for mild asthma, when I was hit suddenly last May with what we thought was carpal tunnel - shooting pains down my right forearm and incredible pain every time I moved my thumb. Then the left hand started in. I took large doses of NSAIDs and went to a hand therapist for a few months. But I also had a horribly painful tennis elbow thing going on, which really threw the diagnosis for a loop. Then in July my feet got tingly. And my face went numb and tingly on both sides. And the pain got worse. All tests, including EMG and MRIs, have been negative for everything except a herniated disc in my neck that isn't bothering me. (And I have low vit. D, no surprise.) I made my GP do a chest x-ray last week; that was negative as well. Ditto for eye exam. Lately I've been waiting on a referral to a larger hospital (my local neurologist says "nothing explains my symptoms") and doing a lot of research. New things are freaking me out, like the purplish-black spots that appear on my palate and the inside of my cheeks, then disappear. The facial pain, which in the beginning only happened every 2-3 days, is now almost constant (I do have one good hour in the morning). Lyrica is helping lots but I just had to increase the dose to stay sane. The "paresthesia" is no longer "peripheral" - it's up my back and in my butt. Everything is worse on the left side. I'm on a waiting list to get in to an ENT to get one of the oral spots biopsied, but since the spots aren't there every day I don't know when that's going to happen. There aren't a lot of known disorders that cause bilateral facial pain like this. Peripheral neurosarc makes the most sense.> > Funny thing is, my hands, which were so painful I couldn't work or cook or tie my shoes in the beginning, are now much better. I can't knit or spin every day like I used to, but I can type and work again, which has made the rest of this stuff much more bearable. I think this partial recovery may have something to do with the steroid patches the hand therapist used on my thumbs. Funny, as I write this, I'm noticing small, subcutaneous bumps on the back of my hands. I guess I have good reason to be paranoid at this point.> > So, the upshot is, I think I have a rare disease that needs to be treated pronto before I lose more nerve function, and there are no doctors in this part of the country (even at the hospital I've been referred to) who know how to diagnose and treat said rare disease. But I need a diagnosis before I can get into a specialist who knows what they're doing. SO, the strategy at this point is to hold a local doctor hostage until I can get a biopsy of my mouth so that somebody else in another part of the country will take me seriously. Make sense?> > I would welcome any other ideas! Thanks for being there.> > J> > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > > Quote Link to comment Share on other sites More sharing options...
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