I had my yearly check-up with my Dermatologist today and I was told that I now have Rosacea & Ocular Rosacea.... (my translation) just another issue to add to my already long list of medical problems.

Oh well, what can one do, but to move forward and deal with life.... and with that I would like to ask if any one here at PC has had this problem and if YES - please let me know how it has effected your life and how you personally deal with it.

I am asking, for while my doctor is great and she explained everything to me and suggested that I follow up with a few of my other doctors.... I still would like the personal touch of INFO from someone that has actually lived with the issues of Rosacea.

and..... while doctors are book trained, they don't always know all there is to know about the problem / disease.

* * * * * * * * * * * * * * * * *

I have been doing some research on Rosacea and Lupus, and Lupus is often wrongly diagnosed as Rosacea, and that which my Dermatologist told me to follow up with my Rheumy doctor to be tested for (and recheck my RA)..... I am just so darn tired of it all and slowly getting depressed again with all the worries that I must face having an Autoimmune Disease, possibly 2 or 3 now.

.................................................. .. Anyone here have Lupus?

BIG SIGH!! BIG SIGH!! BIG SIGH!!

....... When does it ever end? - or DOES IT?


LoVe,
Rhapsody -

... going in for more blood work this week.


Thanks....
LoVe,
Rhapsody -

Here are my SYMPTOMS – (started around May 2006)

March 25, 2006

While in Texarkana Arkansas (March 15 to April 10, 2006) - I developed a cold around March 25 with flu like symptoms that caused coughing with yellow phlegm, no fever.


Symptoms in order of occurrence:

1.) Couching w/ thick yellow phlegm (daily, hourly, day & night)
2.) Head/Skull PAIN (sharp, stabbing) – w/ Migraines
3.) Neck PAIN (back of neck)
4.) PAIN in ears, eyes, face and jaw
5.) Head, facial & hand numbness
6.) Server Fatigue (quality of daily living has been lost)
7.) Chest PAIN w/ pressure & flutters (worse than normal)
8.) Watery eyes w/ burning sensation and blurred vision
9.) Ringing in ear (off and on)
10.) Nausea (sick to stomach a lot)
11.) Heart Burn, food regurgitation, swallowing difficulties
12.) Sinus Difficulties (pain, congestion, stuffy)
13.) COLD - seems like I am always freezing
14.) Insomnia (has increased due to head pain)
15.) Frequent Urination w/ inner pain & discomfort (large & small amounts)
16.) Mental Confusion w/ short term memory loss
17.) Strange sound behind / around eyes and nose – (electrical white noise)
18.) Depressed feeling, withdrawn, irritable, moody
19.) Flat Blotchy Rash on Face & Body w/ fatigue, migraines, and nausea


Symptoms lived with on daily / weekly basis – for two years or more

1.) Face and Neck swelling
2.) Ears swelling (alternates)
3.) Chest pain & flutters w/ pressure
4.) Hearing Impairment
5.) Daily & Weekly Fatigue
6.) Heat & Sun Sensitivity (body & eyes) – w/ nausea & fatigue
7.) Flu like Symptoms (on bad days)

* * * * * * * * * *

Rhapsody,

Your variety of symptoms, along with your skin problems make me wonder if you have ever heard of Porphyria.

There are several different types of Porphyria, one of which is called AIP (acute intermittent porphyria).

With AIP a patient will have certain symptoms during the "acute" stage, and other symptoms during the "intermittent" stage.

I think there are 8 different types of porphyria and AIP is just one of the types... it's something to look into and read about to see if you think it fits you.

Take care,
Liz

Thanks..... I will keep the INFO in mind, but in all I am going to let my Rheumatologist run his test first when I see him on Feb. 2, 2007 - then we will take it from there.

....... It is so hard to get a correct Dx for so many illness have the same symptoms, Big Sigh!!


LoVe,
Rhapsody -

have you had your thyroid or parathyroid checked?
Myasthenia has some of those symptoms too.
just some ideas.

My Rheumy doctor will be doing a COMPLETE blood work-up when I see him on Feb 2, 2007........

Sounds like you have a great doc, covering all bases. Good luck

Hi,
I am new here today and have been suffering with ocular rosacea(???)for almost 2 years.
I have not responded to any of the treatments and have been tested once for lupus(unconclusive)and now getting worse so have to be retested and on this site today to look for others to share symptoms,treatments with.
Sounds like I may be in your category and wonder would like to ask you some of your treatment,meds and if they helped at all. Thanks,Sandy