Hi Barara and welcome. I hear you as I keep getting things added too.Not everyone gets other things but some of us do. You probably have UCTD or MCTD as well as lupus as I do. Lyrica is a dangerous drug as far as I am concerned and same with cymbalta. I am on ms contin and statex for brerak through pain. It never takes it away for me but at least tolerable.there is a boardfor sclerederma Ra and MCTD/uctd. If you are interested, hugs marilyn

Hi, sorry you are struggling with this. I have only posted a couple of times on here. I have been a member of the mixed connective tissue site for over a year.
I have auto inmmune hepatitus, scleraderma, lupus, mctd, and God only knows what else. I have trouble with inflammation in my colon also. I have been going through a relatively quiet period with my health, but it doesn't happen very often, and i can feel the fatigue setting in again. I know some people get long remissions, but i have never experienced this. My ana is sometimes negative sometimes positive. I am not sure what all the blood tests mean. I try not to think about it too much.
I am waiting for a referral to see lupus/mctd specialists in London, to try and get some more answers and hopefully a bit more help.
I had to finish work, and i am even struggling alot of the time to look after myself, the house and pets. I live in the middle of nowhere, and have decided to try and move into a small village or town to make my life easier.
I think this illness is even confusing to doctors, especially if you have other problems as well. Over the years i have seen hepatologists, nephrologists, immunologists, dermatologists....but never a rheumatologist. I can't understand this as it seems to be the norm for most people. They have spoke about sending me, but it has never materialized. I am so tired of not really knowing whats going on, thats why i am prepared to travel much further to see specialists.
I wish you all the best in health and in life/
Love and hugs x

Hi and welcome, the truth is Lupus doesn't affect anyone the same way as anyone else... just today i was joking about how you know how ill you are by how many "ologist" you have. I have a nephrologist, cardiologist, Hematologist/oncologist, Rheumatologist, psychologist.... lol see what i mean ::grins:: gotta keep laughing. Each time i go to the Dr i wonder what else will happen.

I think that once your immune system is impaired by whatever-it-is, then if you get one autoimmune condition you can get more . . .
A lot of people on here have fibromyalgia, and I agree with Dallas that it will probably be soon considered an autoimmune problem, and a lot of people are hypothyroid, which is an autoimmune problem. . . . .

It really is one %)($(&%(???!!!! thing after another.

oh, and lyrica and cymbalta are notorious for causing vision problems, I won't touch either one, I had a harrowing experience driving at night after being on cymbalta for just a week. Lyrica is related to cymbalta.

Hi and welcome to a helpful and supportive group. I do understand not being diagnosed or Docs changing diagnoses. I think I have it down to either Lupus or scleraderma. I take plaquenil,Savella (which is a newer and better version of Lyrica less side effects) and Hydrocodone as needed for pain. Best to you as on your journey of finding a diagnoses.

Barbara,

I just want to clarify one thing to you. Diagnosing these autoimmune diseases is relatively complicated. There is no one test for lupus or scleraderma, per se. I suspect that when you say you tested positive you meant that you had a positive ANA test. Although most lupus patients do have positive ANA tests, not all positive ANA test people have lupus. There's a segment of the population that will have positive ANA tests and never have any autoimmune diseases. As for the test for scleraderma, was the doc talking about the way your ANA test looked or about a specific antibody test? I know it's a lot of stuff to absorb, especially when the doctor is throwing it at you. BTW, the majority of lupus patients also have fibro so that wouldn't be a big surprise.

Now, the fact that the doc is doing a liver biopsy means that he/she has some reason to be concerned, given your liver funciton tests (LFTs). (I've had a liver biopsy and if you want to message me with any questions, I'll be glad to answer them. In fact, I had TWO liver biopsies...lucky me!0 There is a separate disease call Lupoid Hepatitis which is NOT lupus, but autoimmune hepatitis. That disease can also cause a positive ANA test.

As for pain control, because you are having liver problems, you want to AVOID anything with Tylenol/acetaminophen because it causes liver failure in high doses. Talk to your doctor about what's appropriate in your case given the situation with your liver.

What other symptoms are giving you problems? Some meds are more specific for certain problems. Like for instance, Indocin works better as an NSAID on chest inflammation. So if you could tell us a little more, maybe we can help point you in the right direction.

Lastly, don't under estimate the abilities of a pain management doctor once you have a diagnosis. My pain has improved incredibly by these docs. But, I suspect, before the docs will start prescribing, they'll want to zero in on your liver situation.

Hope this info helps.

Tracy

I have to clarify something here. The majority of lupus patients have fibro is not a true statements. Studies being done show 20-25% have fibro.. I hope you will get the info you need directly from the Dr. Make sure you take notes and ask questions. hugs marilyn

Welcome! I hope u will find the help and the support here. I am also new and I must say that most of the people here are angels! The rest - just dont mind them!
Big Hugs
xxx

i want to thank everyone for your replies. all this is just so confusing and i don't think the dr's really know either.. :-(

You are welcome. It does take quite awhile for the drs to figure it all out. hugs marilyn

I'd like to amend my statement earlier by posting the latest figures for lupus patients who have fibromyalgia. To sum up what follows in "journal-eze", a whopping 61.8% of the lupus patients tested had tender (i.e., trigger) points. So previous numbers of 1/3 of lupus patients having fibromyalgia were terribly underestimations of the real picture. Having attended literally hundreds of support groups over the years, I would be hard pressed to name a single patient who DIDN'T have fibromyalgia! I think that because it is the "lesser" disease, the docs often skip over it if you've got a primary disease like lupus or scleraderma. At least that's my guess.

Tracy

From the Journal of Rheumatology 2004, http://www.jrheum.com/abstracts/abstracts05/48.html;

Number of Fibromyalgia Tender Points Is Associated with Health Status in Patients with Systemic Lupus Erythematosus

SOMCHAI AKKASILPA, DANIEL GOLDMAN, LAURENCE S. MAGDER, and MICHELLE PETRI

ABSTRACT.

Objective. To ascertain the association between fibromyalgia (FM) tender points (TP) and health status in patients with systemic lupus erythematosus (SLE).

Methods. We performed a cross-sectional study of 173 SLE patients enrolled in the Hopkins Lupus Cohort. Patients were examined for FM TP and asked to complete the Health Assessment Questionnaire (HAQ) at the same visit.

Results. We found 38.2% of patients had no TP, 44.5% had 110 TP, and 17.3% had 11 TP. No significant association was found between the number of FM TP and age, sex, race, or level of education. The mean score of the HAQ was 1.3 0.4. There were significant associations between FM TP and HAQ (no TP 1.1 0.3, 110 TP 1.4 0.4, 11 TP 1.6 0.6; p = 0.0001).


ME AGAIN: In other words, only 38.2% did NOT have trigger points; meaning the rest DID, just varying amounts of trigger points.

That is a very small number of people in that study so its reALLY NOT WORTH THE PAPER IT IS WRITTEN ON. iF i COULD SEE BETTER TODAY i WOULD POST SOME MORE ACCURATE STUDIES. MARILYN

I have lupus, raynauds, secondary sjogrens, Fibromyalgia, chronic purititis, arthritis, a few different rashes which are on face, trunk, back, salp and shins, sensitivity to sun, hair loss, dental problems, blurred vision, and Interstitial cystitis and chronic pelvic pain, bottom of my feet are sore and burn often.......other than that I am great.

We are going to argue over whether or not persons with Lupus have Fibro, Dallas it isn't nice to correct people and Barbara is right.

Fibro is a basically a word to describe unexplained body and joint pain.....! It is the catch all phrase that doctors use when they can't explain why you hurt!

Let just say we all hurt, we would all like more answers and that by the way does included the medical profession, they don't tell us they don't know not because they want to torture us.......they really don't know.

The body is a very complex organ that scientist have been researching for centuries and even in this day and age they still have not and probably won't ever figure it out in it's entirety.

We are all here because we want to support and help one another not correct.
I don't know anyone on this site in person but I have made some wonderful friends and I care for everyone.

ICISH....You are so right. One should never have to defend what they say and the knowledge they have and try to share with everyone.
I think some people need to review the rules of DS and try to remember that this is a Support Group not a forum to criticize others and make them feel as if they are on trial.
Sorry if that sounded harsh.
I totally agree with what you said about continually correcting people.
Just needed to vent...(its getting a bit old and always seems to be over something trivial made into something more). I seem to be rambling....think I'll go to bed.
Blessings to ALL!!!!