canon

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About canon

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  1. Gil, Jean and all of you wonderful people, Sorry for not posting sooner but have not been to the forum for awhile. Had no idea the post was still active. Gil don't feel bad about your teeth, most of us have problems with ours too. Caps and partials if we can and hope for the best. We all deal with things the best we know how. Jean I hope you got the answers you were looking for and they can treat your stomach pain now and that the spray has helped with the mucous in your throat. I managed to get the nose and throat stable, now the eyes are dry again. Already have punctal plugs in and tear eye drops 3-4 times daily. We changed the eye drops to another brand that has more balance. It is wonderful hearing from you all and hope you don't mind the post all in one. Have been resting all day and now sleepless. Have been sick again with frequent infections, swollen axillary, cervical lymph nodes, eye infections, blepharitis and terrible muscle weakness and pain. No cancer detected yet. I am now pretty much back on my feet and feeling much better. Lots of antibiotics then unfortunately had to have a steroid injection. Doing better the past few days. Good doctors. Yah!! Would like to post more often and will as soon as this disease keeps still awhile. The wonderful support I have sustains me. Thank you all so much and when I find another solution you will be the first to know. Take care and thanks again. Hug to you all, Judy
  2. Joelf, Thank you too for the encouragement. Hope you are managing and keeping ahead. Hugs, Judy
  3. Amanda, Thanks and hope you are managing ok and keeping ahead of your symptoms too. Take care and big hug. Judy
  4. Hi Jean, Hope you are feeling better and your nurse approved the saline nebulizer for the thick mucous you have in your throat. It has really been helpful for me. Take care and good luck in keeping your symptoms under control. Be careful with allergy medications they can make sjogren symptoms much worse. Big hug, Judy
  5. Hello, It has been a very long time since I have posted though I do drop in once in awhile to browse the forums and site. A good portion of my job requires computer work so my hands do not tolerate extra computer activities. For those who do not know me or remember me I have systemic sclerosis, Raynaud's, hypothyroidism with graves autoantibodies, also sjogren's and a twist with Sweet's syndrome (not quite considered autoimmune as of yet). Anyway for the past year I have developed nasal ulcers which became infected with MRSA, also developed mouth ulcers with some nasty areas in my throat at times and very dry airway and lungs. I have been at my wits end trying to find something to relieve some of these symptoms. At my last pulmonologist appointment I asked if it would be okay to use normal saline nebulizers for these problems and she agreed it might help. Though she added albuterol and mucomist the normal saline is the most effective. Within one week of starting the normal saline nebulizer treatments, the mouth and throat ulcers cleared and have not returned. The thick mucous in my throat is thin enough to cough out now, (sjogren's can cause thick mucous from dryness). My lungs don't feel like they need a drink anymore either. I also breathe the mist in through my nose and the nasal ulcers have improved about 80%. My nose doesn't bleed anymore. The ENT doctor had given me nasal spray with mupirocin ointment for my nasal passages which did not help much. Of course the mupirocin is to help prevent me from getting MRSA again and will be needed as long as I have open ulcers. Needless to say I am no longer at wits end and am so relieved and had to share this with you and how this treatment has improved life for me. It is simple, inexpensive and so helpful. Hope this can help someone with Sjogren's after clearing it with your Doctor first. Oh by the way, the ulcers in my mouth were white and my dentist recomended I see a surgeon for a biopsy. Lucky for me when I went to the surgeon the white spots were gone. No biopsy needed. Big hug to all, Canon
  6. Hi Margaret, Hope you and Gareth are getting along ok. My rheumatologist recommended that I get both vaccines but to take them a few days after the methotrexate shot I give to myself every week. It is low dose but none the less it lowers my immunity. Is Gareth taking anything that would lower his immunity? If so it might be safer to ask when in the week cycle might be better for him. Will keep both of you in mind. With gentle thoughts, Judy
  7. Hi Janey, Just wanted to wish you the best tomorrow and will keep you in my thoughts. I am glad you are not nervous, it really doesn't help anyway!! Maybe I'll hold off till Thursday before trying your tip since reflux has refluxed through my nose at times. What a conversation!!! Talk to you soon on your progress. Thanks snowbird and good to hear from you. With gentle thoughts, Judy
  8. Margaret, Hope Gareth is doing better and hope everthing is under control. Its been a long time. About the H1N1 shot I am not sure of either. Will need to talk with my rheumatologist about it. If it is not a live vaccine like the regular flu shot it might be ok but will let you know. Glad I read your post because I was just going to get it without asking a Doctor. Take care. With gentle thoughts, Judy
  9. Janey, Thanks for the invite to compare notes. My appointment is not until Thursday so shoot me an e-mail too. You'll go before me! It will be interesting to know if the treatments are similar too. I am kind of nervous about the difficulty swallowing plus all the other symptoms and having to go to a speech therapist. Are you nervous about it? With gentle thoughts, Judy
  10. Hi Morgan, Welcome to the forum and wish you well. My participation has been quite limited the past few months probably because I have limited scleroderma with a few new twists, haha! No pun intended again. My voice has been hoarse for a few years which has progressively gotten worse with time. The problem started with having to clear my throat and was not a concern until I heard my voice on a video I was taking one day at my grandson's (by proxy) baseball game. I was cheering him on. It took several times watching and listening to the video before I realized it was my voice and thought this can't be me but it was. With everything else that was going on with my health I let it go thinking it might sooner or later clear up and found it doesn't clear on its own. The sooner you get it checked out the better off you will probably be. You possibly might be able to change some habits to prevent further damage if damage exists. Scleroderma can change things dramatically and it sometimes can happen quickly if it is indeed the culprit. A speech therapist can help you with some exercises and correct how we breathe and talk even with a disease process going on, should that be what is happening. She/he might also refer you to an ENT doctor and or GI doctor. None of my doctors noted a voice change so you might want to start with a speech therapist unless you need a referral. Good luck and take care of yourself. With gentle thoughts, Judy
  11. Hi Janey, Very sorry to hear of your problem. I have not been on the forum for a very long time due to many problems that have occured during the past few months. The list is mind boggling. It is not easy for me to use computers at this time due to pain issues but was compelled to respond to your post. I too was just diagnosed last week with oropharyngeal/esophageal dysphagia. It also extends to the beginning of the esophagus only. My tongue has lost its ability to clear food at the back of the tongue and what they called an absent swallow reflex which did not happen constantly though. The bolus of food just flew like yours down the throat with airway open. Luckily I did not aspirate and hope you did not either. The video was interesting to watch as you said. Mine also showed food pooling behind the epiglotis which just builds up if I don't clear it with a drink. This really is a terrible disease as we all well know. I too am booked with a speech therapist for 6 weeks. I used to work with this therapist at a nursing home so we know each other which makes this a little easier to digest. No pun intended. They diagnosed the problem as scleroderma for me and have read a few articles in the medical section on this site I believe. They also attributed part of the problem to the Barrett's esophagus. Both scleroderma and barrett's has affected my vocal cords too. Speech will also try to help with my raspy harsh voice now which they have diagnosed as reflux laryngitis with laryngospasms which means my larynx closes off due to the reflux and can not breath at that specific time and the larynx is inflamed with an onion type skin. There is not alot of information anywhere on onion skin except for lipoid proteinosis which is another story but they have found it in connective tissue disease also. Janey I will be thinking of you next week when I start speech therapy and wish you well also and success with your treatment. Would like very much to keep in touch to see how you are doing. With gentle thoughts, Judy
  12. Hi Jennifer, Welcome back. Jordon sounds like an amazing girl. It is to bad some doctors don't act appropriately or professionally but you have found some that are professional and that is half the battle. Hope you will be able to get the treatment that is needed for your daughter and will keep you and Jordan in my thoughts. With gentle thoughts, Judy
  13. Hi red, So sorry you might be having problems with raynaud's now. It might be better to notify your Doctor because sometimes they would like to take a look. It is not good to leave raynauds unchecked because it can be damaging and there is medicine for it. Try to keep your hands and feet dry and warm to prevent attacks. Take care. With gentle thoughts, Judy
  14. Hi clem, The punctal plugs are working somewhat. The optometrist wants to place punctal plugs in the upper tear ducts since we have only done the lower ducts. Even with that must still use the artificial tears. You might want to use a humidifier in your room or house to help. My eyes don't hurt anymore and they did hurt alot but, have to keep up with all the treatments that are prescribed otherwise I am in trouble. Take care. With gentle thoughts, Judy
  15. He Cher, Have had positive anticardiolipins several times. They are not always positive for me. The anticardiolipins mean we can form clots more so than the usual person. I am taking plavix, it works alittle like aspirin. Also had a fatty liver at one time. I was told it can be fatty then correct itself depending on what I am eating. It has not been fatty for awhile. That is all I can help you with. Take care, Judy