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Thread: Doc hasnít seen some of my symptoms...?

  1. #1
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    Default Doc hasnít seen some of my symptoms...?

    Hi all. Iíve dealt with rosacea for years, but itís gotten out of control over the last few years. Iíve got redness/flushing mainly but can get occasional bumps as well. Hereís the tricky part: my nose swells daily on the tip and sides. Thereís a sensation that goes along with it so I can tell itís happening without looking in the mirror. My derm said heís never seen anything like this and doesnít think itís related to rosacea. (I figured this was the subtype that involves the nose, but he didnít indicate that.) Iíve been to PCP, ENT, rheumatologist and allergist and had gobs of tests, none of which have told me anything.

    I took a picture but canít figure out how to share with you. Iím happy to if that would be helpful (and someone can help a low-techie).

    On another note, I have not had much success with Rx so Iím trying to manage with natural products, oils, and diet. Yogurt masks have given the most relief when my nose is swelling and my skin is burning.

    Thank you!

  2. #2
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    Quote Originally Posted by BLAM View Post
    Hi all. Iíve dealt with rosacea for years, but itís gotten out of control over the last few years. Iíve got redness/flushing mainly but can get occasional bumps as well. Hereís the tricky part: my nose swells daily on the tip and sides. Thereís a sensation that goes along with it so I can tell itís happening without looking in the mirror. My derm said heís never seen anything like this and doesnít think itís related to rosacea. (I figured this was the subtype that involves the nose, but he didnít indicate that.) Iíve been to PCP, ENT, rheumatologist and allergist and had gobs of tests, none of which have told me anything.

    I took a picture but canít figure out how to share with you. Iím happy to if that would be helpful (and someone can help a low-techie).

    On another note, I have not had much success with Rx so Iím trying to manage with natural products, oils, and diet. Yogurt masks have given the most relief when my nose is swelling and my skin is burning.

    Thank you!
    I have same issues and have developed extreme tremors.
    Look at SjŲgren and also neurological rosacea and seek help before itís too late.

  3. #3
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    Hi Ruby. Thank you for your response. Iím sorry for what youíre dealing with, too! Would my tests have not shown one of these (at least Sjogrenís) since I had so many done at various docs, including a rheumatologist? I have no idea who to see next given who all Iíve already seen: PCP, allergist, ENT, rheumatologist, not to mention a host of holistic practitioners.

  4. #4
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    Quote Originally Posted by BLAM View Post
    Hi Rubydo1.

    Thank you for your response. Iím sorry for what youíre dealing with, too!

    Would my tests have not shown one of these (at least Sjogrenís) since I had so many done at various docs, including a rheumatologist? I have no idea who to see next given who all Iíve already seen: PCP, allergist, ENT, rheumatologist, not to mention a host of holistic practitioners.

  5. #5
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    No SjŲgren Disease is often missed with bloods.
    Do you have eye or mouth issues?

    Did the rheumatologist do bloods ?
    Have you had CT scan ?
    Do you get cold hands and feet ?
    I Have Raynauds aswell
    I’m at rheumatologist on Thursday and have CT scan Saturday
    I’m really bad at the moment struggling to function to be honest I think I’m
    Screwed as tremors getting worse daily.
    But get everything checked out.
    Last edited by Rubydo1; 13th May 2019 at 09:37 PM.

  6. #6
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    Hi Rubydo1. Iím so sorry. I hope you get some relief!
    Yes...eyes so dry Iíve had one cauterized, but I thought it was bc of lasik. Yes...dry mouth but I chalked it up to medication.
    If itís missed by blood tests, Iíll follow up with my rheumatologist.
    Thank you.

  7. #7
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    Quote Originally Posted by BLAM View Post
    Hi Rubydo1. Iím so sorry. I hope you get some relief!
    Yes...eyes so dry Iíve had one cauterized, but I thought it was bc of lasik. Yes...dry mouth but I chalked it up to medication.
    If itís missed by blood tests, Iíll follow up with my rheumatologist.
    Thank you.
    The blood tests for Sjogren's are Anti-Ro and Anti-La but many Sjogren's patients are negative for these 2 tests
    Generally autoimmune markers like ANA and rheumatoid factor can be indicative.
    A very good test for Sjogren's is lip biopsy - quick and easy. My derm did mine (was negative). Will show inflammation (or not)

  8. #8
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    Quote Originally Posted by BLAM View Post
    Hi all. Iíve dealt with rosacea for years, but itís gotten out of control over the last few years. Iíve got redness/flushing mainly but can get occasional bumps as well. Hereís the tricky part: my nose swells daily on the tip and sides. Thereís a sensation that goes along with it so I can tell itís happening without looking in the mirror. My derm said heís never seen anything like this and doesnít think itís related to rosacea. (I figured this was the subtype that involves the nose, but he didnít indicate that.) Iíve been to PCP, ENT, rheumatologist and allergist and had gobs of tests, none of which have told me anything.

    I took a picture but canít figure out how to share with you. Iím happy to if that would be helpful (and someone can help a low-techie).

    On another note, I have not had much success with Rx so Iím trying to manage with natural products, oils, and diet. Yogurt masks have given the most relief when my nose is swelling and my skin is burning.

    Thank you!
    Similar symptoms. You can tell when it is swelling just from the sensation. About the yogurt masks, do you just use natural yogurt with nothing else and leave it on your nose all night.
    The nose swelling for me is always worse waking up in the morning.

  9. #9
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    I'm having similar issues- flushing on the nose and cheeks, flushing at night and during sleep, all of which had a sudden onset after having mild rosacea for a few years. I've seen others on this forum have similar symptoms too, but it seems to be rare.

    People seem to get relief from different things such as antidepressants, blood pressure meds, and a range of other medications that are off-label use for flushing. Various lifestyle changes through diet, etc. can also lessen the flushing it seems. I've been on Mirtazapine (an antidepressant) for almost 3 weeks now- seems like it could be helping but there are other lifestyle changes I made that could be adding to that improvement as well. I have had quite a bit of relief the last few days which is huge for me and making me really hopeful (I was in a pretty dark place a month ago).

    I'm also seeing an endicronologist soon- so far I've seen my primary care doctor and 2 dermatologists but haven't gotten much direction from them unfortunately. I'm dead set on continuing to search for anything that helps though. This all started a couple months ago for me so I feel like I've just begun really getting a handle on this new condition I have.

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