Liz,
Have you looked into Myalgia Encelphalymyelitis? I did so much research of my one diagnosis after another; i have all you mentioned plus others; I have raynauds (from the scleroderma): I have M.S. and diabetes (but it is from a different source); i have diseased htyroid; myofascia pain; atrial fib; lung problems.. probably from the sclero....i have eye problems (double vision; morning blindness; sudden blindness when reading..all return in seconds, etc)
I have bouts of amnesia, ...i cannot name them all..but I KNEW they fell under ONE category..not a gazillion diagnoses....
I went to a site and found a lot of help. ME is NOT recognized easily by doctors...you think FIBRO was hard to get dx'd...try ME. but ME is infectious and we are not to give b lood (also not to do in FIBRO)...try this site:
hummingbird guide to ME - google it and you will find the right address; i can never remember it. they have a message board where you can meet people abnd ask questions...there is a site also where you can actually get a doctor to answer your questions....
I am trying to this day to get a doctor to diagnose me. if I go to Australia or England, I can get dx'd. BUT in Austrialia there are people being put into instutions for it.
there are a lot of suicdes from this painful condition....we have our own memorial list.
it is no laughing matter, that is for certain.
and this is painful to say the least
but he heart and lungs are also involved.
there are tests you can have done...it will confirm ME....but you have to find a doctor willing to do this...to listen to you...to read the information onit.
the Hummingbird site has a place for the doctor to read...it is PACKED with informatino for everyone; family members of the ME patient, the doctor and the ME patient herself.
try it....there are a LOT of us out here....it is infectious...and we are getting it from one another....W.H.O. recognized it and I received an email from them asking me (and eeryone else) to get the word out on ME...but it is not an easy thing to do. just recognize it in othes and try to get them to at least look into it.
it MIGHT NOT be M.E. but then, we should make sure.
i hope you are sucessful in finding treatment. I have so many doctors that I have to make a choice....i have to stop going to some; my lilfe is at risk for this, but I cnanot afford 13 doctor visit a month...and WHO THE HECK WANTS to spend THAT much time at a doctor's office? wait, wait, wait. 15 minutes of being mis-treated....and then PAY PAY PAY.
not me....i am going to begin changing that part...I need to have treatment for my pain...and then just leave the rest up to God.
Quote:
Originally Posted by Wittesea
BIG thanks to DocJohn for adding an Autoimmune forum. 
Hello to the other autoimmune folks...
I'm Liz (30-something, female, married, no kids, 3 cats) with a Dx of UCTD - Undifferentiated Connective Tissue Disease.
Big mouthfull of words meaning it's something autoimune and it's something wrong with your connective tissue, but we don't know exactly what it is, so we'll just give you a big mouthful of words as your diagnosis.
I also have a few of the so-called "minor" autoimmune problems... Sicca syndrome, Raynauds, etc...
To top everything off is fibromyalgia, chronic myofascial pain, anxiety, hypermobility with chronic tendon injuries, TMJ, endometriosis, blah, blah, blah, etc....
Persoanlly, I think there is a bigger picture - one main medical issue that has yet to be diagnosed that will explain why I have so many diagnoses. I think all my current diagnoses are all meant to explain symptoms, not a diagnosis that will explain the problem.... and without knowing the big picture diagnosis I am stuck treating symptoms instead of treating the source.
So that's me in a nutshell. Anyone else care to introduce themselves?
Liz |