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Marybeth

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  1. Thank you so much. Sounds like I’m not the only one. Is this Becomase the same as Flonase? That is what my ENT said to try but doesn’t really work that good. I had a bout of vertigo. Never had anything like this. Do you have this every day and it makes me shakey? mj
  2. Hi and thank you for replies. It is a daily issue. It started a couple years ago after I took huge doses of Vit D for a deficiency. It has been awful. I have just had 2 MRI and a CT scan and they see nothing in my sinus or head. So guess I am normal there. My family thinks it may be something I am ingesting. I take an Ace Inhibitor but they say that can’t be it. My sinus get worse after taking my med and it also has a duretic in it. mj
  3. Hello I have been having weird sinus problems since 2018. I have swollen turbinates and a deviated septum. This is every day. I take fluticasone, saline and my nose hurts. Is this some kind of sign of face changes from my diagnoses? Does anyone else have this? I have a diagnosis of Limited Scleroderma. It is a real problem as it feels like pressure. I have tried to ask my Dr to try another BP med as it could be a side effect. Crazy thing. I have even asked if it could be Sjögren's disease. She says I don’t have the antibodies. Help Sincerely Marybeth .
  4. Hi I happened to come across these posts.I have Raynauds in one finger and underneath one big toe. I work outdoors in very cold temps and use heat holder socks and electric battery gloves. I have 2 horses and these work for me. The gloves are awesome, I just have to make sure they are charged. Up to 8 hrs.
  5. Hi. Thank you folks. I am on BP medication Lisinopril/HCTZ so I am well controlled. My readings are good most of the time, but don’t really like this medication. This started in fall of 2017. A mystery. I monitor my blood pressure daily. I will bring this up with my rheumatologist in December. We will see.
  6. Hi all, I have had a couple of ECG's done at the Emergency Room (ER) over the past year. Anyway, I looked at the results and it said I have an enlarged left atrium. Followed up with my family doctor and he didn’t seem too concerned but with the limited Sclero diagnosis I’m concerned. He said to bring up to my Rheumatologist which I will. It could be due to the anxiety I have been under and starting Buspar here. The hospital never told me and I didn’t have a chart set up with them at all but something made me look and get a chart. Has anyone had anything like this before? I am in early diagnosis, so don’t know what or if this means anything. Your help is appreciated. MJ
  7. Hi I was reading this and have to agree animals are a gift to us. I have to share this story that happened to me today. I have been having blood pressure spikes that lead to I think anxiety attacks. Not sure. Anyway I have a Great Dane. I was sitting in my easy chair trying to relax and breathe steady. He stared at me and then came over and put his nose right on my heart. He knew and stayed that way for a bit. Amazing and I will never forget. Love comes in many ways Marybeth
  8. Hello I was hoping just maybe I could find some help. I was on here a bit ago and everyone is very supportive. I have an Anticentromere of >8. My Rheumatologist diagnosed me with limited scleroderma. I am not sure what to expect. Not much to go on here. I am accepting it if it comes to pass in manifestations. I have had very low Vitamin D and that went up to standard. My knees are stiff, toes and feet get pain, but very mild and fingertips a bit tingly at times. The stuff travels around, so who knows? Had PH test but they found mild bronchial dilation whatever that means. My rheumatologist said she saw no systemic activity. Same symptoms from last fall when diagnosed. I can accept all that. Now this is where it gets interesting. I was was given very large doses of Vitamin D. Then I started to develop a sinus issue. Never had them in my life. I take Lisinopril/HCTZ for blood pressure currently. The doctor said I don’t have Sjogren's, so what's up with my sinus? Saw ENT and had no allergies, but may be Sinusitis or Rhinitis. Say what? Okay, with that said and done I still have a sinus issue. Lots of things cross my mind. Then I started to get anxiety attacks. Well POA for my mother in another state, full time job, diagnosis, just a lot. So it goes and everyone is trying to get me to take buspirone; probably will start now. Here is the question. Is this face or sinus pain possibly attributed to the scleroderma? Or is it inflammation or could it be face tightening starting? It seems to happen every day and can make me a bit wobbly. Today it feels a bit like a vice right across my forehead and down my nose. Pressure. So I guess I am at a place now where I need to ask, is anyone out there having same thing or explain what this face tightening is? Sometimes my scalp is sensitive and I can’t wear my hair up anymore. Weird and more weird. Of course I have had carpal tunnel for years and I am losing hair from who knows what. I am post menopause. The bane of my existence is this stupid sinus thing. So there is my tale of woe. Any input would be great and thanks. MJ
  9. Hi I definitely relate to the panic thing. On line looking at this or that, but my daughter has been supportive and talks me down. I am in the diagnosis stage with many weird feelings going through my head. I am afraid of the placquenil and side effects and have to get brave. I am trying to accept. Thank you for your words. Had a breathing test but never heard my results. Hope is there and blessings. Marybeth
  10. Hi Shelley, Thank you so much for your response. I do have a lot of planning to do. I am not from Cleveland but came here with my husband as we were both in the military. I am from out west originally. It is definitely stressful here and time to move on. I have one son in college yet and will wait for him to graduate and I will try to retire in August of 2020. I am starting to research Dr in Rapid City SD and area. It will definitely be a LESS stressful way of life. My kids live home right now but my daughter will be moving with me. She is looking for work right now In that area. I don’t think I will be too rural as I want to be close to care if needed. I will be 60 and should be near area with hospital. I do have two older horses and they are my saving grace. They are slowing down like me LOL. I have to leave here, it really has gotten bad. So it goes. It all may pass but I have to accept what comes. One day at a time. My mother has dementia and she is in New Jersey so I have that on my plate as well. I care for so many. Blessings you. Marybeth
  11. Hi and thank you for your post. It is so nice that there are folks like yourself to offer support through this time. My family helps by listening and telling me to be patient as well. No sense complaining. Faith and time. I will be retiring in a couple years and moving to South Dakota. My biggest concern is finding a specialist out there. Right now I am in the Cleveland area so I think we might have a Specialist here if needed. I will be talking to my rheumatologist on 3/13 and on 3/16 I have a lung pressure test being done. Will go from there. I am not good with meds but do take Lisinopril/Hctz now. So blessings and good to know you are there! Marybeth
  12. Hi and thank you for your post. It is so nice that there are folks like yourself to offer support through this time. My family helps by listening and telling me to be patient as well. No sense complaining. Faith and time. I will be retiring in a couple years and moving to South Dakota. My biggest concern is finding a specialist out there. Right now I am in the Cleveland area so I think we might have a Specialist here if needed. I will be talking to my rheumatologist on 3/13 and on 3/16 I have a lung pressure test being done. Will go from there. I am not good with meds but do take Lisinopril/Hctz now. So blessings and good to know you are there! Marybeth
  13. Hello All, I am new to this org and want to say hi. I am in a limbo of sorts with my diagnosis. I am 58 with 3 grown children, widow, veteran, horses and plenty of pets! I have a positive anticentromere of > 8 and titer of 1:620. It went up some. I went to my general practitioner August of 17 with aching all over. He did an ANA test. Referred to rheumatologist. She found low D of 11. So took the 50000 iu. Felt a bit better after. I am at 15. Off and on white on ring finger and right hand pinky. I was actually in a warm room both times. Now today had again on ring finger after being outside. All 6 months apart. Knees hurt, some numbness in feet and hands but do have carpal tunnel. Then they found Osteoarthritis in my neck. It cracks and sounds like rice crispies. Saw bone doctor for that. Now the mystery of it all is my sinus are the worst. Have been for 6 months since this all started. Never had sinus problems. Saw dermatologist also for what they thought might be morphea on knee. Biopsy done came back benign inflammation. So that is where I am at now. So howdy all. My rheumatologist has me at 5 different diagnosis. Now she has limited Sclero. I am a work in progress. Marybeth
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