Can't Handle This

[jillp]

Ok, so I tested positive for an auto immune disease and the pattern came back for diffuse scleroderma which most people die of within 10 years.   I went to 3 Rheumatologists, 2 primary care physicians, 2 Opthamologists and they all said not to worry as I wasn't showing symptoms and diagnosis is more based on symptoms.  Suddenly, my mouth is burning, my skins feels like it's burning.  I check my hands every few minutes to see if they are swollen.  I am petrified.  I am wondering if the burning mouth and skin is really a symptom of anxiety or all of my fears are coming true.

[janaboo]

check the post on here with 100 anxiety symptoms and you will see that burning mouth and skin definitely are anxiety symptoms.  You can probably find others on there that apply as well.  Reading it may help you see there are other possibilities for your discomfort. 

[jillp]

Thanks.  I have read it MANY times.  I have severe OCD of health issues so a big problem is I never believe the best part I always live in fear.  It sucks.

[Perfectly_Imperfect]

diffuse scleroderma is a form of Systemic Sclerosis, it's the most serious form. Where you diagnosed with Systemic Sclerosis and are just worried about diffuse scleroderma, and I haven't read anything about death within 10 years. Diffuse scleroderma involves thickening of the face or trunk (ab area) that can rapidly progress to hardening (like very very quick) - you can also develop high blood pressure which you didn't state you had. I would listen to your dr's - they are the professionals here.

[jillp]

The pattern that went with the ANA was for diffuse.  I have no real symptoms but I have burning mouth and my skins at times feels like it's burning.  There is a poor prognosis with systemic scleroderma.

[floridaguy65]

Hi Jill:) I know you're stressed out and anxiety sure does make us race off to worst case scenarios. If you remove any possible health illness / disease from your current situation, you are still faced with dealing with your Anxiety Disorder(s). There just isn't much that anxiety cannot cause as far as physical manifestations. What do you do for your overall anxiety? A healing path for your anxiety can create some solace which can translate into, simply, feeling better overall - emotionally and physically. Even IF you were diagnosed with a disease, you would need to address your anxiety issues for improved quality of life.

All that said, you have a positive test result. OK, so now you need to go about addressing this...calmly and patiently (I know that's a tough challenge...but be mindful of calmness:)

Here's what I found on the Mayo Clinic website about the ANA test. Please don't try to do your own research right now...you're in a very amped up anxiety state and it is very difficult for us to analyze the pertinent info with relation to our own health when we are hyper anxious. We tend to only see horrible outcomes. So, IMHO, let others do the research  for you, if needed. But, to me, the best source of info, certainly would come from your docs:) They are trained to apply med info directly to your particular evidence.

From Mayo: The result of an ANA test doesn't prove that you do or do not have a connective tissue disease. Along with other tests, an ANA test helps narrow the range of possible diagnoses if other factors suggest that your illness is the result of an autoimmune reaction. The presence of any antinuclear antibodies is a positive test result. Having a positive result doesn't mean you have a disease. Many people with no disease have positive ANA tests. The finding is particularly common in women older than 65. Certain infectious diseases, such as mononucleosis, have been associated with the development of antinuclear antibodies. Some medications, such as certain blood pressure lowering drugs and certain anti-seizure drugs, may trigger antinuclear antibody formation as well. If your doctor suspects you have a connective tissue disease, he or she is likely to order a number of tests. The result of your ANA test is one piece of information your doctor can use to help determine the cause of your signs and symptoms.

Scleroderma is NOT a disease that is missed in its diagnosis. The Docs aren't worried currently. But, if I were you, since you do have a positive result, I would ask your Doc about ANA retesting. Maybe there was something else temporarily going on in your bod that cause a positive. Maybe the test itself showed a false positive for some reason. But as your Docs said, this disease is overwhelmingly a symptoms based diagnosis.

To date, you have a history of Anxiety Disorder(s)....to date, you do NOT have a history of a serious health issue. You have NOT been diagnosed with Scleroderma...this is great:) I know how panicked we can get when faced with a potential health issue when struggling with anxiety. All you can do is try to work your way through this by relying on your Docs for the health answers. And continue (or truly begin) working on seeking a healing path for your overall anxiety / health anxiety.

There is always hope and there is help:)

Peace and Feel Well:)

[jillp]

Thanks.  Went to a Dermatologist today.  She graduated from Yale.  She said no signs of Scleroderma.  Doubts I have it may have some other auto immune disease that may just show up SOMETIME>  Just great.  She said not to worry.

[clohessy9]

I also was "diagnosed" (according to blood tests) with an auto immune disorder specifically scleroderma as well...Went to rheumatologist also.  He said my #'s were very high for auto immune indicating that I have something but not sure what as I have so specific symptoms.  He did more blood work for some strange auto immune disorder have follow up next week.  I avoided goggling it until I know something for sure...you can PM me if you want we can go through it together.  It actually not really bothering me as I don't feel like I have it, my other symptoms bother me more.  I do get burning feeling, tingling, numbness, my left ear/jaw is really bothering me !I have had many stupid test recently so who knows.  feel free to contact me anytime as I never sleep (a problem in of itself :) )

[jillp]

Thanks would love to talk to you.   I wouldn't mind comparing notes and hoping for the best of us. 

[clohessy9]

I go back to the doc on wednesday to see bout test results but yes plese keep in touch!