Results 1 to 9 of 9

Thread: Doc hasn’t seen some of my symptoms...?

  1. #1
    Junior Member
    Join Date
    Apr 2019
    Posts
    5

    Default Doc hasn’t seen some of my symptoms...?

    Hi all. I’ve dealt with rosacea for years, but it’s gotten out of control over the last few years. I’ve got redness/flushing mainly but can get occasional bumps as well. Here’s the tricky part: my nose swells daily on the tip and sides. There’s a sensation that goes along with it so I can tell it’s happening without looking in the mirror. My derm said he’s never seen anything like this and doesn’t think it’s related to rosacea. (I figured this was the subtype that involves the nose, but he didn’t indicate that.) I’ve been to PCP, ENT, rheumatologist and allergist and had gobs of tests, none of which have told me anything.

    I took a picture but can’t figure out how to share with you. I’m 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 I’m 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
    Senior Member
    Join Date
    Mar 2019
    Posts
    461
    Country: UK

    Default

    Quote Originally Posted by BLAM View Post
    Hi all. I’ve dealt with rosacea for years, but it’s gotten out of control over the last few years. I’ve got redness/flushing mainly but can get occasional bumps as well. Here’s the tricky part: my nose swells daily on the tip and sides. There’s a sensation that goes along with it so I can tell it’s happening without looking in the mirror. My derm said he’s never seen anything like this and doesn’t think it’s related to rosacea. (I figured this was the subtype that involves the nose, but he didn’t indicate that.) I’ve been to PCP, ENT, rheumatologist and allergist and had gobs of tests, none of which have told me anything.

    I took a picture but can’t figure out how to share with you. I’m 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 I’m 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 Sjögren and also neurological rosacea and seek help before it’s too late.

  3. #3
    Junior Member
    Join Date
    Apr 2019
    Posts
    5

    Default

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

  4. #4
    Junior Member
    Join Date
    Apr 2019
    Posts
    5

    Default

    Quote Originally Posted by BLAM View Post
    Hi Rubydo1.

    Thank you for your response. I’m sorry for what you’re dealing with, too!

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

  5. #5
    Senior Member
    Join Date
    Mar 2019
    Posts
    461
    Country: UK

    Default

    No Sjögren 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
    Junior Member
    Join Date
    Apr 2019
    Posts
    5

    Default

    Hi Rubydo1. I’m so sorry. I hope you get some relief!
    Yes...eyes so dry I’ve had one cauterized, but I thought it was bc of lasik. Yes...dry mouth but I chalked it up to medication.
    If it’s missed by blood tests, I’ll follow up with my rheumatologist.
    Thank you.

  7. #7
    Senior Member laser_cat's Avatar
    Join Date
    Jan 2017
    Posts
    653
    Country: United States

    Default

    Quote Originally Posted by BLAM View Post
    Hi Rubydo1. I’m so sorry. I hope you get some relief!
    Yes...eyes so dry I’ve had one cauterized, but I thought it was bc of lasik. Yes...dry mouth but I chalked it up to medication.
    If it’s missed by blood tests, I’ll 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
    Member
    Join Date
    Dec 2005
    Posts
    81

    Default

    Quote Originally Posted by BLAM View Post
    Hi all. I’ve dealt with rosacea for years, but it’s gotten out of control over the last few years. I’ve got redness/flushing mainly but can get occasional bumps as well. Here’s the tricky part: my nose swells daily on the tip and sides. There’s a sensation that goes along with it so I can tell it’s happening without looking in the mirror. My derm said he’s never seen anything like this and doesn’t think it’s related to rosacea. (I figured this was the subtype that involves the nose, but he didn’t indicate that.) I’ve been to PCP, ENT, rheumatologist and allergist and had gobs of tests, none of which have told me anything.

    I took a picture but can’t figure out how to share with you. I’m 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 I’m 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
    Member
    Join Date
    Jun 2019
    Posts
    70
    Country: United States

    Default

    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.

Similar Threads

  1. Replies: 30
    Last Post: 18th June 2015, 02:58 AM
  2. Replies: 2
    Last Post: 10th October 2011, 05:59 PM
  3. Which doc would you go to?
    By boo2facialredness in forum General rosacea questions
    Replies: 3
    Last Post: 18th April 2008, 06:13 PM
  4. Doc's In NJ/NY Area
    By cashisclay in forum Intense pulsed light and laser
    Replies: 3
    Last Post: 22nd October 2007, 10:42 PM
  5. New doc, new hope
    By Stacy in forum General rosacea questions
    Replies: 4
    Last Post: 18th June 2005, 12:17 AM

Tags for this Thread

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •