Guest guest Posted December 1, 2005 Report Share Posted December 1, 2005 Hi All Wednesday Am just when we were all ready to get in the car fro the drive to Pleasanton we got a call canceling the appointment since Dr.Colburn was not feeling well. Can't describe the disappointment but of course a healthy doctor is better than a tired doctor:-) His office called in to reschedule the appointment to Dec 14 and we are waiting for that. Jinni, I am heartened to hear of Kelsey's treatment and hopes it will work for Grace too. And I agree that the name Grace is just beautiful:-) I'll update later after our appointment. Lalitha (Grace's mom) > > > > > > Welcome Lalitha, > > > It is very unusual indeed that here in the U.S., your daughter > was > > > not diagnosed prior to 14 months. That must be so frustrating > for > > > you- especially that you had to insist on seeing a specialist and > > no > > > one apparently picked up on it prior. Her clubfoot must have > been > > > pretty mild at birth. Did any of the doctors ever give you any > > > idication that she had something wrong with her feet/legs that > she > > > would outgrow? Do you have pictures of her feet when she was a > > baby? > > > Luckily, Dr. Colburn is one of the most experienced doctors in > the > > > Ponseti method outside of Iowa. Your little girl is in great > > hands! > > > I don't know how regularly Dr. C communicates with Dr. Ponseti, > but > > > Dr. Ponseti has treated quite a few older children recently with > > > success. I'm sure if Dr. Colburn is not seeing positive results > > > with your daughter, he will communicate with Dr. Ponseti about > what > > > to try. I'm not sure if your daughter is too old for the > > > percutaneous tenotomy procedure at 18 months or not. I'm sure > Dr. > > > Colburn will discuss this with you once her foot is corrected > > enough > > > where he can see how tight her Achilles tendon is. > > > If you want to research further, there are lots of good links and > > > information on this group's website under the files, photos, and > > > links section. There's info here too: > > > http://members.tripod.com/ponseti_links-ivil > > > We're glad you're here and hope you will keep us posted on your > > > daughter's progress. I hope she will adjust to the castings okay > > > for you- I'm sure it will be hard due to her age, but she'll > learn > > > to get around despite having them on. Dr. Colburn may have to do > a > > > fiberglass overlay on the plaster to keep them intact. > > > Best wishes- > > > & (3-16-00, left clubfoot) > > > http://ponseticlubfoot.freeservers.com/ > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2009 Report Share Posted July 12, 2009 Here is Tracie's explanation of sarc: Sarcoidosis is an autoimmune disease. What that means is that your body can't make the distinction between what is healthy tissue and what needs to be healed-- like a cut. The scientists don't know what causes sarcoidosis, or how to cure it. It is a disease where our immune system sends out white cells to take care of an infection, then our immune system follows up with TNF-a and TNF-b cells. Each one cleans out the process of the previous one. For some reason, we don't clean out the old cells, and the followers end up building one on top of the other-- and form granulomas. For most people, they may never know they have sarcoidosis. However, for many of us, we end up with it in our lungs-- and may have been going to the doctors for respiratory infections for a very long time. Finally, someone orders a chest xray, and there is the "etched glass" look -- a sign of sarcoidosis. There are multiple stages of sarcoidosis-- Stage 1-- is where you have some minor infections, but a short dose of prednisone or solu-medrol, generally gets it's under control. You may have some intermittent periods of shortness of breath, and your docs, as well as you yourself, will blow it off as seasonal allergies, or maybe mild asthma. Stage 2-- You've started having more problems being short of breath, and maybe more intense repiratory infections-- and you may have some lymph pain around your chest. It's become a more common problem, without many breaks between treatment. There is minor scarring of the lung tissue, and this makes it harder to get air across the lung tissue where it's picked up by the red blood cells and taken as oxygen to your body. Fatigue is starting to become an issue. Stage 3- Pulmonary function tests start showing a problem with DLCO--Diffuse Lung Capacity Oxygenation--- as your lungs are now scarring (much the same as pulmonary fibrosis) and you have a tendency to not be able to get the bad air (carbon dioxide) out of your lungs unless you learn to REALLY FULLY EXHALE and blow that air out. You may have some numbness in your hands and feet-- as your body needs the oxygen to keep the vital organs alive, so it cuts back the amount that goes out to your extremities. You may need supplemental oxygen during exertion. Stage IV. You have significant scarring, lung capacity has dropped down (ie. mine is 64% of normal) and you will need supplemental oxygen full time. This level gets trickier, and you may develop pulmonary hypertension where the heart demands more oxygen than the lungs can provide-- and eventually the huge vessel that goes from the lungs to the heart has to thicken to hold the extra blood pressure. As it thickens, it narrows from the inside, and this can put you at high risk for a blood clot either in the lungs or heart. (I've been in Stage 4 for 8 yrs now and yes, I do have pulm hypertension.) Normal healthy lungs look like your new kitchen sponge-- and with sarcoidosis, ours beging to look like the sponge needs to be tossed out, as the cell membranes tear or fibrose (scar) over. Mine look like the sponge that is falling apart, and so old that it can't absorb much-- I've only got 2 (out of 5) healthy sections left. Sarcoidosis can affect any organ. Lungs, eyes (iritis or uveitis), liver, kidneys, muscles, joints, ligaments, bones, heart, nerves, -- it doesn't care. Somehow, the signal got sent that there was a problem, the immune system kicked into hyperdrive, and even if the problem has long gone, your immune system isn't shutting down to normal. Fatigue-- not "I've had a long day" fatigue, but exhaustion that will make you feel like that one time you had pneumonia as a kid was a calkwalk- fatigue; is huge. Body aches and pains--- the docs will tell you it's fibromyalgia, or arthritis, or chronic fatigue syndrome-- (and it may be) but it doesn't let up. Sarcoidosis loves our hands and feet and ankles. It is a form of sarcoid-induced arthritis, and anti-inflammatories do help. This disease mimics Multiple Scleroisis, Rheumatoid Arthritis, Peripheral Neuropathy, Dementia (neurosarcoidosis), Fibromyalgia, Chronic Fatigue, all wrapped into one. Most people do not get sarcoidosis to that extent-- and for those of us that do- we will be needing to learn to pace ourself, rest when the body dictates, take multiple anti-inflammatories, and immune suppressants. Generally the docs start you off with high dose prednisone, and then as they wean you off- and your symptoms return, they need to add a different immunosuppressant-- Ie. Imuran, Arava, Methotrexate, Plaquenil, or the bigger guns-- Humira, Enbrel, Cellcept, Remicade. It is important to start with the least offensive, and add or adjust as needed-- one at a time. That way, if you've got any side effects from the meds, they can figure out what is causing it. Hope this helps, Tracie NS Co-owner/moderator Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22Hotmail® has ever-growing storage! Don’t worry about storage limits. Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2009 Report Share Posted September 27, 2009 Hi Rach, Welcome to the family. I do wish you did not have to find us.. But you are in good hands, and we have a wealth of information in both the sharing in this forum, along with our Message ARCHIVES and LINKS sections. If you scroll down- you'll see the Neurosarcoidosis Community and that will have the addresses. I do hope you have a very good Ophthalmologist to monitor your eyes. Uveitis and Iritis is how I was diagnosed 19 yrs ago. The challenge, as you've learned is that uveitis and iritis leads to glaucoma. So, when you find yourself feeling as though you have the flu, or are light sensitive-- you know to get into the Eye Doc immediately. Don't let them put you off-- as what vision you do have can be easily lost. What are they treating you with? I hope that they have you on more than just prednisone, as when sarc becomes neurological, we need better immunosuppresants without the side effects of long term pred usage. Feel free to ask questions-- and the owners and moderators as well as some wonderful members will step in and answer what they can. Many of the articles in our ARCHIVES can be printed out and shared with your docs, and they are written by docs-- so that helps. All the mods and owners are also sick-- so if a day or two go by without seeing your post-- give us time-- we will get to it! TAke care, Tracie NS Co-owner/moderator To: Neurosarcoidosis Sent: Sunday, September 27, 2009 9:08:50 PMSubject: New Here My name is Rach. I have recently been diagnosed with Neurosarcoidosis after five years of being told I had a rare or atypical form of multiple sclerois. After a gallium scan they found a lymph node to biospy and the diagnosis was confirmed. I have various neurological problems but uveitis which has taken a fair bit of my vision. Right now I'm trying to find as much information on neurosarc as I can and try and make sense of it all. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2009 Report Share Posted September 28, 2009 I am also diagnose in the last 18 months with Neurosarcoidosis. I am sorry you Had to find us. But I am glad you did. The people are all great here and will provide links and information for you. The one thing I have learned is almost everybody's Sarcoidosis is different from everybody else's. Please feel free to ask questions and to even vent. We all know venting is sometimes helpful. Tracie , Rose and Darleen to name a few are real heaven sent they will provide the most help. But let me add you to my Prayers and wish you Blessings. Goodnite and be well Greg From: rachyanne Sent: Sunday, September 27, 2009 11:08 PM To: Neurosarcoidosis Subject: New Here My name is Rach. I have recently been diagnosed with Neurosarcoidosis after five years of being told I had a rare or atypical form of multiple sclerois. After a gallium scan they found a lymph node to biospy and the diagnosis was confirmed. I have various neurological problems but uveitis which has taken a fair bit of my vision. Right now I'm trying to find as much information on neurosarc as I can and try and make sense of it all. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2009 Report Share Posted September 28, 2009 Hi Rachyanne,Welcome to our group.I am glad you finally got the correct diagnosis and I pray that you find the help you need.I was diagnosed in April 2008 and hospitalized again in January 2009.I found this group to be a comfort for me.Some of my fears have been calmed and the information that has been shared has help me cope and know what I'm dealing with.Be blessed and continue to utilize the group as long as you need to."AS YOUR DAY SO MAY YOUR STRENGTH BE"HELENFrom: Krumme Subject: Re: New HereTo: Neurosarcoidosis Date: Monday, September 28, 2009, 1:17 AM I am also diagnose in the last 18 months with Neurosarcoidosis. I am sorry you Had to find us. But I am glad you did. The people are all great here and will provide links and information for you. The one thing I have learned is almost everybody's Sarcoidosis is different from everybody else's. Please feel free to ask questions and to even vent. We all know venting is sometimes helpful. Tracie , Rose and Darleen to name a few are real heaven sent they will provide the most help. But let me add you to my Prayers and wish you Blessings. Goodnite and be well Greg From: rachyanne Sent: Sunday, September 27, 2009 11:08 PM To: Neurosarcoidosis@ yahoogroups. com Subject: New Here My name is Rach. I have recently been diagnosed with Neurosarcoidosis after five years of being told I had a rare or atypical form of multiple sclerois. After a gallium scan they found a lymph node to biospy and the diagnosis was confirmed. I have various neurological problems but uveitis which has taken a fair bit of my vision. Right now I'm trying to find as much information on neurosarc as I can and try and make sense of it all. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2009 Report Share Posted September 28, 2009 Hey Rach Welcome to the group. I am so sorry it had to be this way but it is good that you found us. There is so much support and love in this group. I was dx with NS in 06 and treasure the words and advice I get here. Be sure to check out the archives, full of info. Prayers sent to you for a pain free week and lots of comfort and love form everyone. Jackie New Here > My name is Rach. I have recently been diagnosed with Neurosarcoidosis > after five years of being told I had a rare or atypical form of multiple > sclerois. After a gallium scan they found a lymph node to biospy and the > diagnosis was confirmed. I have various neurological problems but uveitis > which has taken a fair bit of my vision. Right now I'm trying to find as > much information on neurosarc as I can and try and make sense of it all. > > > > ------------------------------------ > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > > CHATROOM LINK: http://www.sarcbuddies.com -- Open all the time..... > > 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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