Hi all, update from my initial profile, have received three letters today one from the doctor who first felt I had Sjogren's syndrome, second one a report from the doctor who did the ultrasound, seems both feel that I have Sjogren's. However, the last from ENT saying cant rule out sarcoidosis (though scan showed no change to lungs) .
Still not to sure what this means for me yet either over work or how it is going to effect me physically moving forward. For now guess more appointments with more doctors been told via letter need to see a rheumatologist ASAP, unless biopsy dictates otherwise.
Finding it hard to explain to those about me why this darn cough (which has plagued me for nearly a year) wont go away, why it hurts to walk short distances, why I just want to sleep sometimes and the shortness of breath.
Anyone have any tips on dealing with symptoms, picked up on sugar free gum and carrying a bottle of water. Avoiding using sweets as have a fairly young son and his mates are always in and out don't want to get in to sweets as medicines as another member wrote of.
Sorry guys nothing new here just trying to come to terms and manage, from what I have read not a very unique experience, which is good to read and feel the support already.
Well right off the top, nice to see you here. I'm glad you are feeling supported. It sounds like you got doctors that are familiar and on it already which is great. Sounds also like your diagnosis is fairly new. How long have you been dealing with symptoms? Now that you have a direction, the doctors will be able to help you with managing some of the symptoms. While they are working that out, make sure you are being good to you. It can be tough when you have a little one so be careful to mange you time and energy well. Its ok to rest when you need to. I know a humidifier (which I ran for the dry eyes) helped with my other symptoms such as the nosebleeds and that annoying "Sjogren's cough". My doc said it comes from the dryness that extends down into those passages. Fun fun.
Explaining this to others is where the issue comes in…."but you look fine", "you can't feel that bad", etc…Its a choice between educating people on a regular basis or saying nothing, neither of which is good. you will figure out quickly who you need to tell/ make understand and who not to bother with.
People here will also come up with lots of great things you can do. Please keep us updated also on how the rest of your tests go.
Like many others, from what I have read, had symptoms for a while, loss of voice, glands swelling and seemingly catching infections easily for about five years. Only reached a head last year brief hospital admission told viral infection and sent home. Seen various docs between now, two felt it was asthma (not surprisingly pumps did nothing) and then only recently found a general medicine doc who took history latched on to gritty eyes and dry mouth along with nagging cough put them together took bloods suspecting and now has confirmed I have an autoimmune disease.
I have three trusted Doctors, my Internist, my Rheumatologist and my Chiropractor. I go to all three with the important things, and as it turns out, I will have one on the right, one on the left and the DC will usually tell me he understands the thoughts of both.
I don't think that is a comfort when trying to get a diagnosis or answer an important question, like is it time for back surgery, but it surely makes me stop and consider everything.
I do hope that you can get some solid answers and find a treatment that will work for you.
Thanks for posting, I'm glad you found your way here!
Hi dancermom, have three cats of my own, but as off work at mo, hope to go back once things sorted (treatment started), friends when they have gone on holiday have got me looking after theirs. So short answer would have been both. LOL.
I'm recently diagnosed and new here as well. In my case, my chronic dry cough turned out to be the result of acid reflux making its way up my esophagus and traveling back down into my lungs causing irritation. I would never have made the connection between popping antacids three or four time a day to my troublesome cough in the morning, but a month on a heavy dose of Prilosec has improved my cough tremendously.
I was on Prilosec for years until it depleted my wbc to a 1. After I got off it, my wbc went up only to go back down because of the many autoimmunes I've developed since then. You may want to check it out....all the stomack meds are bad for you but that one is one of the worst.
A Mom on Spin said:
Hi CatMinder,
I'm recently diagnosed and new here as well. In my case, my chronic dry cough turned out to be the result of acid reflux making its way up my esophagus and traveling back down into my lungs causing irritation. I would never have made the connection between popping antacids three or four time a day to my troublesome cough in the morning, but a month on a heavy dose of Prilosec has improved my cough tremendously.
The voice going, the swollen glands in the throat, etc etc….all stuff I've dealt with and continue to deal with. Isn't it fun! LOL
Someone just recently asked how I am. All I could think of to say was that SS is an active disease that demands attention. It something to pay attention to every day.