View Full Version : New, whats new...I am confused, diagnosed, but maybe not!?

11-10-2008, 10:23 PM
Hi, so long story short, I am in my 30's, a mom and doing okay, but I have my BAD days.

I am glad that I found this place to share, learn and hopfully laugh :wink:

I have been going to docs for 8 years. I have a rheumy and a neurologist. They proscribe a medication for every symptom so I have a bathroom full of bottles that I can never remeber what is what! I only want to take a med that helps the root of the problem!

I was on Plaquenil for years and it helped, but my rheumy moved and so I do not have one at the moment, therefor I will not take the medication if it is not being monitored by a doctor.

I recently went to the emergency room for a terrible stomach "thing". The doctor just happened to specialize in auto immune issues and felt it necessary to say " This is your Lupus flaring". This was the first time any doctor had said this to me, I have always been told that I had a Mixed Connective Tissue Disorder...wow that is a mouthful!!!

So i was reffered to another rheumatologist and not sure if I should even waist my time and money!

I have a positive ANA speckled pattern, a positive smooth muscle antibody, anemia, a low scleroderma antibody and diagnosed migraines.

So there it is....short story long. Thanks for reading! I hope to get to know all of you.

11-10-2008, 10:48 PM
Hello MyNest :lol:
Welcome to our family. I know how frustrating it can be to have to come to terms with this disease, its medications, its symptoms and, especially, with doctors who are not learned about the illness and/or who neglect to give you complete information, answers or explanations. Believe me, you are not alone.
How long were you taking the Plaquenil when you decided to stop using it? Plaquenil is one of the safest drugs used in the treament of Lupus. Previously, there was much concern about the use of Plaquenil and its propensity to cause problems with the eyes. Eye problems were much more common in the past when chloroquine was the most commonly used anti-malarial drug and dosages of these drugs were considerably higher than they are when used for Lupus. Your doctor will schedule you for regular eye exams every 6 months to test for possible eye problems associated with Plaquenil.
Since it is one of the better tolerated drugs that does not require extensive monitoring by your doctor, you may have done yourself a disservice by discontinuing its use (especially since you say it was working for you). Generally there are no drugs that make a side effect more likely with Plaquenil and side effects are usually limited to mild nausea and occasional stomach cramps with diarrhea of a mild degree occurring sometimes.
A rheumatologist is the best doctor for Lupus (and/or any connective tissue disease). I would suggest that, if you do not want your Lupus to attack your internal organs or (if it has) to cause any of your organs to fail, I would suggest that you do see a rheumatologist and that you and he work together on a treatment plan that is specific to you and your symptoms.
About Mixed Connective Tissue Disease: Mixed connective tissue disease, is "classically" considered as an "overlap" (meaning that you display symptoms of) of three diseases: systemic lupus erythematosus, scleroderma, and polymyositis. Patients with this pattern illness will have features of each of these three diseases. They also typically have very high quantities of antinuclear antibodies (ANAs) and antibodies to ribonucleoprotein (anti-RNP) detectable in their blood. The symptoms of these three diseases almost always will eventually evolve to become dominated by features of one of three illnesses. In your case, the symptoms evolved into Lupus. This, too, is most common and your symptoms may not have evolved when you last saw your previous doctor.
Your "terrible stomach thing" could be an indication of some internal organ involvement that should be discussed with a doctor. I cannot urge you strongly enough to see your new rheumatologist and to take your medication. Lupus can be a very serious disease and can sometimes be life threatening. The only way to prevent this is to see your doctor regularly, take medications as prescribed, make the appropriate lifestyle changes and take very good care of yourself.
We are here to help you to do all that you can to prevent your illness from exacerbating, to help you to understand your symptoms and treatments for those symptoms, to help you to be your own health advocate and to make sure that you understand what your doctors are doing and why. In short, we are here to help you to be as educated as possible about this disease so that you can make appropriate decisions for your health.
I'm glad that you found us and I hope that you allow us to help you.

Peace and Blessings

11-10-2008, 11:24 PM
Hey there SaySusie,
thanks for your reply!

I took the Plaquenil for 4 years. I have my regular eye exams and am not really worried about the eye thing. I have definately had loss of vision in the past year, but I know it is not from the meds.

I guess you have a point that I should at least check in with a rheumy. I will have to see the NP while they are searching for a permanent rheumy. I dont mind this too much as I know her fairley well and believe that she has good intentions. My apt. is monday, thanks for the advice, I will go! :)

So I dont really know if she will have a difinative answer for me, as they never do, but with my last emergency room visit, I guess we will see. I had an ultra sound and more blood tests for the stomache "thing". No results to speak of except that it must have been a virus. I hurt for 5 days (like painful contractions) then all of the sudden gone...and no other symptoms exccept fatigue worse than normal.

I guess that I am suspicious of Lupus now that the doctor brought this up and maybe you are right about Lupus being front and center with this mixed connective tissue thing.

I will let you in on any news, if any, from the doc on Monday!

Thanks again, i will continue to read as much as I can meanwhile.

11-11-2008, 02:48 AM
Hi MyNest,
Welcome to the site. This is a great site. I agree with what Saysusie has told you. My name is Kathy and I have SLE, Lupus. I have had this illness for some 44 years or there abouts. I will be 50 in December. I just want to welcome you to the site.


11-11-2008, 08:00 AM
Hi Mynest..

Welcoming you with a warm hug...

Ditto, I strongly, without a doubt, I concur with what our Dear Saysusie said to you. Medication, rheumatologist, a lifetsyle change is a must...

Read about, to find many ways to change your lifestyle..oodles of experience here. How to keep a journal of your medicines, of your health. To know what drugs to take when a symptoms occurs.

I take daily Plaquenil for Lupus and Protonix for GERD daily..a must, no way around it. I also dose daily with Super B-complex and fish oils. As of late I have added Vitamin A for my rash..

As symptoms rise..flare, I may take Requib for my rest legs sydrome, Lortab or Darvocet for pain, Flexeril for sore muscles, Lunesta for sleep, Reglan when my food sits in my stomach....Prednisone or Medrol for severe inflammation, steroid creams for rashes...Tylenol for headaches. Miralax for constipation. Restasis for potato chip eyes, Sjogrens. ...now Lasix for edema till I find the cause. I've learned I can not take OTC NSAIDs.

Lupus is a chronic systemic disease. It is treated through addressing its symptoms. The symptoms are the root...the inflammation. There is no cure...hugs...just drugs, lifestyle changes to manage, prevent inflammation.

A great read if you haven't read it is The Lupus Book, 3rd edition by Daniel Wallace. He breaks up each symptoms down in chapters and the treatment he uses...

Rheumatologist, are worth the time and monies, especially when you find an excellent one. Good ones are a hard find. Sometimes I believe we can help our doctors to be better care providers by working with them by learning and reading on our own, so we can be a team player in our health instead of waiting for care to happen or not...

You are worth the time and money....

Again welcome....
Keep looking for your wellness.

11-11-2008, 04:58 PM
Thanks for the warm welcome all! You all have very good points, it brings up so many questions, guess I will post a real question in the correct spot!