Guest guest Posted September 12, 2003 Report Share Posted September 12, 2003 Gladys, the problem with sarcoidosis is that it can affect so many different organ systems. You can be seeing a neurologist, pulmonologist, opthalmalogist (Aisha likes to refer to all her " ologists! " ), etc. But you need someone to look at the whole picture. An immunologist is probably the best bet, but they are apparently as hard to find as the Loch Ness monster. I just switched my primary care from a general practitioner to an internal medicine specialist recommended by my pulmonologist. I've just seen him twice, but so far I'm feeling pretty comfortable with him. You can experience lots of weird symptoms with sarc; you feel like you're nuts & many doctors think you're nuts. I've had feelings like cobwebs on my face, shivering feelings in different parts of my body, burning pain in different places, problems swallowing & occasionally blowing my nose--just nothing happens, like a firecracker dud. My first symptoms on my feet were patchy numb areas; it felt like I had tape stuck on my feet. It would come & go at first. I actually pulled the covers off my feet one night, because I was so sure there was tape on them! Eventually, the bottoms of both feet from about the middle forward became constantly numb, but they can also burn if I have them hanging down for long. Now I have a weird area on the right instep; red & firm. It doesn't hurt, but the bottom of my arch is real tender, like a bruise, but there is nothing to see where it hurts! My internist has referred me to a dermatologist; he doesn't think it's sarcoid, but doesn't know what else it can be. This is just a partial list of my weird list of symptoms. Oh, another common one is dry eyes. So you need a doctor who is willing to listen carefully, do a little research if necessary, be open to info you bring to him/her (like Aisha's neurosarc document), and forget the textbook stuff about sarcoidosis usually resolving spontaneously! This is probably more than you wanted to hear. They don't call me Ramblin' Rose for nothing! By the way, I am 54 years old, divorced, have 3 grown children, 5 grandchildren. I have guardianship of my oldest grandchild, , who is 14. My mom, who is 80 years old, also lives with us, plus 2 dogs, 2 cats & one fish (Leroy). I am a nurse-midwife & have had the privilege of catching 3 of my grandchildren. I've been a midwife for 20 years. I'm currently on medical leave because of severe fatigue, leg pain, and emotional exhaustion. I'm having cataract surgery in a couple of weeks; also getting a steroid injection into my lower back to see if that helps my leg pain. I have " sarcoid " leg pain, which is helped by Klonapin, but this other pain isn't responsive to anything. We think it's from degenerative disk damage. So, we'll see. Can't get the injection until 9/26, unless someone cancels. Well, this was Chapter One in the story of my life; stay tuned. Rose in Indiana Intro > > > > > > > Hi! > > > > > > My husband was diagnosed with sarcoidosis a little over 20 years > > > ago. Subsequently our little girl (now 20) was diagnosed with > cancer > > > and his health issues kind of got forgotten while we got caught up > > > with life. Over the years, he has talked about his spleen > flaring up > > > occasionally, etc. but nothing major. Now, he is having a full > flare > > > up like he did at the very beginning. After doing some reading on > > > the web, I'm also wondering how many of the other health issues > he's > > > faced over the past years may have been sarcoidosis related: > Polyps > > > on his vocal cords, numbness and tingling in his fingers (for > which > > > he had surgery to remove a bone spur on his spine), chronic > arthritic > > > type pain in his hands, etc. Right now, he has a lot of > congestion > > > in his chest and a chronic cough. > > > > > > I'm doing now what I wish I had done years ago and trying to learn > > > all I can about this disease. For some reason, I got it in my > head > > > that it ran its course in about ten years. Obviously, since its > > > twenty years later, I was wrong. What should we be doing to > maintain > > > his health? What can I do to help him? > > > > > > Thanks for being here. > > > > > > Gladys Stefany > > > > > > > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > > The Neurosarcoidosis Community > > > > > > Live Group Chat:- > > > Mondays & Fridays 10pm EST USA > > > http://www.elderwyn.com/neurosarcoidosis/chat.php > > > > > > Message Archives and Digest Attachment Pictures:- > > > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > > > > > Members Database:- > > > Listings of locations, phone numbers, and instant messengers. > > > http://groups.yahoo.com/group/Neurosarcoidosis/database > > > > > > Bookmarks:- > > > Add a website URL you have found useful. > > > http://groups.yahoo.com/group/Neurosarcoidosis/links > > > > > > Personal Complaints or problems:- > > > Please email the moderators > > > mailto:Neurosarcoidosis-owner > > > > > > Subscription Details:- > > > 1) Individual email - means that every email sent to the list you > receive. > > > 2) Daily Digest - sends you 25 messages in one single email for > you to > > browse. This is an excellent option if you receive alot of email. > > > 3) Web only/No mail - means that you can pop into eGroups at your > > convenience and receive no email. > > > To modify your subscription settings please visit:- > > > http://groups.yahoo.com/group/Neurosarcoidosis/join > > > > > > To subscribe email neurosarcoidosis-subscribe > > > To unsubscribe email neurosarcoidosis-unsubscribe > > > > > > The moderators will not be doing it for you! > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > > > > > Come stand by my side where I am going, > > > Take my hand if I should stumble and fall, > > > It's the strength and love that you share, > > > That gives me what I need most of all. > > > - Hoyt Axton > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2004 Report Share Posted November 30, 2004 Hi Kim, The actual chelation protocol is the same as are most of the side effects. As you mentioned as an adult side effects can be vocalized and explained which helps in treating them. TK > > So, I'm here to learn how this is different for adults than kids - plus you > are all a wealth of knowledge since you can actually " say " how you feel > while you are going through this! Trying to watch for side affects in kids > is challenging and mostly a guessing game! So, I appreciate you all and wish > you God speed as you are getting better. > > > Kim Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.