[SandyRose]

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.

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

[aimeewebb]

hello everyone, I have just been diagnosed with autoimmune and they are going to begin the testing to see which one that I have. Im looking for someone with information on what to expect. Any info would be greatly appreciated. Thanks

[Teatime]

Originally Posted by aimeewebb

hello everyone, I have just been diagnosed with autoimmune and they are going to begin the testing to see which one that I have. Im looking for someone with information on what to expect. Any info would be greatly appreciated. Thanks

Hi Aimee,
What sort of autoimmune and who diagnosed you? Autoimmune is a huge umbrella and I wouldn't know what to tell you to expect without knowing whom you've seen. Generally, they do some tests before deciding the problem is autoimmune.

I have Crohn's Disease, which is an autoimmune gastro-intestinal disorder, Lupus (an autoimmune connective tissue disease), and other diagnoses related to the two, such as hypothyroidism, migraines, GERD, Raynaud's, and heart problems.

Oftentimes, it can take years to figure things out and other problems can emerge, as well. Just about out of the blue six months ago, I developed a serious heart rhythm problem and I just had a cardiac ablation done to try to correct it 2 weeks ago. Autoimmune stuff is weird, unpredictable and never boring, lol.

Without knowing what's been going on with you, all I can recommend is to make sure you've got a great primary doctor/internist you trust. That's made all of the difference in the world for me. My internist keeps track of everything, coordinates all of the specialists' care, and has a sit-down with me every 3 months to review and plan.

Best of luck with everything!

[bernadettemarie]

Hello, I've been diagnosed with this for over ten years. Along with antiphosoplipid syndrome and erythromelglia.....the only thing that is really a significant problem is neuropathy in hands and feet. Have had all the EMGs, nerve conduction and skin biopsies. All negative, until this Friday....EMG and nerve conduction finally said neuropathy...I'm on cymbalta and nuerontin. Taking vitamins and overall healtlhy. Has anyone else with UCTD had the neuropathy and did anything specific help. It has come and gone through the years....this episode the worst and not really going away. I've been told the try a hyperbaric chamber (like $20,000 and not covered), IVIF - not covered. Microcurrent machine....not really doing much. Using lidacane patches and creme. Drs. can't or won't say how bad this will get. Say it can get better, worse or stay the same. Kind of like going to Atlantic City....anything can happen. What's been everyone's experience with this? Thanks

[Pattimead11]

[It is awesome to meet you. I am 55 year old female with many symptoms .. RA positive but no diagnosis as of yet. I have been having many issues for the past year... joints pain, cognitive impairments, exhaustion, now shortness of breath and constant pressure in the chest area.. It is all a bit frustrating and hoping for some kind of diagnosis soon. Been waiting here in Alberta to see a Rheumatologist since last February.. ( long story) Off to have a lung function test and see the pulmonary guy ( or gal) this week. I am glad I found this site and hope we can find out info and support one another ,,, Yeahhhh I am Patti and look forward to chatting with you and everyone else..

[ginnie]

Yes this is where I belong also. Have multipal auto immune problems. any one start with Epson Barr? I was exposed to DDT. I am sure this had something to do with all the troubles. Will be tested for ceilaic and sjorgrens next week. would like for this to be negative, enough already. I wish the best for all of us.
Any one take an auto immunosupressant called DNCB? ginnie

[lmba214]

Originally Posted by ginnie

Yes this is where I belong also. Have multipal auto immune problems. any one start with Epson Barr? I was exposed to DDT. I am sure this had something to do with all the troubles. Will be tested for ceilaic and sjorgrens next week. would like for this to be negative, enough already. I wish the best for all of us.
Any one take an auto immunosupressant called DNCB? ginnie

I think EBV and other viral infections are a factor. I have Sjogrens, Lupus (of one kind or another) and anti-MAG antibodies. Have so wondered about pesticides as I grew up in FL from 1970 to 1983 and remember the mosquito trucks and living on a lake, swimming with weed killer. My brother has autoimmune disease as does his high school sweety/ neighbor.