Guest guest Posted October 23, 2006 Report Share Posted October 23, 2006 Hi Leona, What you are talking about does sound like NS. It's also possible that with Stage 3 pulm sarc, that you have enough scarring in your lungs to make it so that you are not able to exchange the air in your lungs (diffusion) correctly. If the air in the lungs gets caught (called air trapping) then we actually end up hyperventilating. This is because if the lung sacs are scarred, the air we breath in can't get across the lungs to be picked up by the red blood cells and taken out to our extremities. So it sits there, and turns to carbon dioxide, and we get the numbness, the tingling, the dizziness and the mental confusion. A simple exercise is to exhale as long as you can, then slowly breath in-- and exhale again (twice as long as it took to inhale) and see if in a couple of minutes- if some of that numbness and dizziness goes away. If it does, you'll know that the problem is IN PART with the diffusion capacity. You may be in need of supplemental oxygen if you find that you are getting short of breath as you try to do things. Has anyone done a pulmonary function test and checked your diffusion (DLCO) levels as you exercise on a treadmill. Are you taking Folic Acid with the Plaquenil? Vitamin B defiency can cause the numbness and symptoms of the restless legs. (A sleep study can and should also be done.) The meds they put us on generally have a notice that Vit B defiency arises as a side effect. This effects mood, body pain, mental and cognitive functions, along with memory. However, our MD's don't put this part of the puzzle together- so we end up with more meds, complicating the problem further. Check out the LINKS and ARCHIVES. (Scroll down and you'll see the site address) and there are many sites and articles available for your use. Print them out and share them iwth your MD's. You'll find and already know that we have to be our own advocates-- and if your MD's don't want to work with you to get you better- find other MD's. Welcome to the gang, we're all in this together, Tracie NS co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2006 Report Share Posted October 23, 2006 Hello, I am new to this site and I have had sarcoidosis for years now.I have it in my lungs, heart, spleen,upper abdomen. I am stage three and the last week or two have been having more than ususal shortness of breath, chest pain that goes through to the back. I also have started jerking, it will be just short all at once jerk that comes and goes, it can bee anywhere from the whole body to just certain parts of the body.I have episodes of being light headed or dizzy. I am on Plaqunil, albuterol( when needed), and was just put on advair. I think that the jerking and dizzyness may be neruosarcxoidosis. Does anyone know? Leona Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2006 Report Share Posted October 24, 2006 > > Hi Leona, > > What you are talking about does sound like NS. It's also possible that with > Stage 3 pulm sarc, that you have enough scarring in your lungs to make it so > that you are not able to exchange the air in your lungs (diffusion) correctly. > > If the air in the lungs gets caught (called air trapping) then we actually > end up hyperventilating. This is because if the lung sacs are scarred, the air > we breath in can't get across the lungs to be picked up by the red blood cells > and taken out to our extremities. So it sits there, and turns to carbon > dioxide, and we get the numbness, the tingling, the dizziness and the mental > confusion. > A simple exercise is to exhale as long as you can, then slowly breath in-- > and exhale again (twice as long as it took to inhale) and see if in a couple of > minutes- if some of that numbness and dizziness goes away. If it does, you'll > know that the problem is IN PART with the diffusion capacity. > You may be in need of supplemental oxygen if you find that you are getting > short of breath as you try to do things. Has anyone done a pulmonary function > test and checked your diffusion (DLCO) levels as you exercise on a treadmill. > > Are you taking Folic Acid with the Plaquenil? Vitamin B defiency can cause > the numbness and symptoms of the restless legs. (A sleep study can and should > also be done.) > The meds they put us on generally have a notice that Vit B defiency arises > as a side effect. This effects mood, body pain, mental and cognitive > functions, along with memory. However, our MD's don't put this part of the puzzle > together- so we end up with more meds, complicating the problem further. > Check out the LINKS and ARCHIVES. (Scroll down and you'll see the site > address) and there are many sites and articles available for your use. Print them > out and share them iwth your MD's. > You'll find and already know that we have to be our own advocates-- and if > your MD's don't want to work with you to get you better- find other MD's. > > Welcome to the gang, we're all in this together, > Tracie > NS co-owner/moderator > Tracie, When I posted the message yeaterday, I was wondering if the jerking and nervousness etc. may be neurosarcoisosis.Late last night I noticed that I have white patches in my mouth and read up on the advair more and found out that the advair side affects where white patches in the mouth,trouble breathing, increased thrist, vision problems, shaking seizures( which expalins the jerking). I have experienced all of these since I started the advair about 2 weeks ago. I guess that's where it pays to read up on all medication. I will mention to my Doctor the recommendations you suggested about the test, etc. Thanks for replying. Leona 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.