"Dont look sick enough." Well, good for your rheumy. By now a Dr should know that how a person looks is not necessarily how he/she feels.
I am glad you dont have this disease, but hope you find out what it is you do have and I hope it is curable.
Mary Ann

Your ANA can go lower or negative while you're bring treated. Plaquenil, methotrexate and prednisone can lower you ANA. I'd find a new rheumatologist if this one will not continue to treat your symptoms.

Thank you and appreciate the info. I'll see what happens after
the new blood test results, the results of a recent MRI, two heart tests, and the two upcoming test on my esophagus. These all happen in the next two weeks. I just don't understand why she would say I have it (I have it in writing) and then reverse herself. What if I have been accidentally lying to my friends and family? Two doctors told me I had MCTD. What was I to do?

G

Rnp is MCTD, I dont think that goes away
im not sure, but if he can diagnose you so well, either live cam him to get your changes
or i would suggest finding a new doctor and bringing all the paperwork you have and you can get

Thanks again. I always thought that your ANA could fluctuate with MCTD. It is all so confusing and scary. Every symptom I have seems like MCTD. Maybe if I dont have it, it is all good news, but it just feels strange right now. I had a group of people I could relate to in so many ways, and I feel like that has been ripped from what I thought was a gentle and understanding safety net. My rheumy mentioned Sjogrens, so I expect we will know more about that after the new tests.

FYI I failed to post that my teter was

I keep getting cut off on my comments. I guess there is a word limit. Ny ANA titer was

Sorry. Don't know why my responses are cutting off. The ANA titer was 1:20 and the RNP was 3.8. I take Plaquenil.

I've been in the same position. One appointment I was told I have Lupus, the next Sjogren's, the next Psoriatic Arthritis. Then told that there was nothing wrong with me. It's heartbreaking. And I felt exactly the same about my family and friends, I thought that I'd just confuse my family and friends and have them think that I had lied to them.

So I just kept my mouth shut and didn't say anything, except to my mother. What really confused me was that they told me to stay on Plaquenil, but there was nothing wrong with me.

I just hung in there and at my last appointment they told me I have Undifferentiated Connective Tissue Disease.

I hope that they'll leave you on Plaquenil regardless of your diagnosis. It's obvious you have something autoimmune going on and even if they're not sure about the diagnosis, the treatment stays the same.

Thank you, I needed that. Obviously, the insomnia is kicking in.... I'll stay with this MCTD group for now. I was talking with my husband last night, and we both think I have it. I have every symptom that is related to it.

I need to feel connected and not alone. Unfortunately, I get suicidal when feeling alone. (I am not suicidal right now!)

Thanks to everyone,

Gabrielle

I really don't think it matters which support group you stay with. These conditions over lap so much that you would fit in anywhere. It's clear you have something autoimmune going on, let's just hope your doctors re-realise it again soon!

Have they taken you off Plaquenil? And have you improved on it? My doctors have said that that's why they're sure I have something autoimmune, because of the improvement on Plaquenil.

Just hang in there. I'd say at your next appointment they most likely will have changed their minds again.

Feel free to message me if you're ever feeling that way!!

Good luck.

Yeah, stick with us. You are always welcome here, however your official diagnosis changes. Who knows, it may be MCTD again. I swear, there is a ton of research that needs to be done on these diseases. I think they are all the same disease with different sets of symptoms.
Mary Ann

Thanks you all.

The kindness and support I receive here is amazing. Please know how thankful I am.

My mom gave me some advice this morning: Quite looking for a champion doctor. Most likely, no doctor will take on my cause - whatever that means. No one will apologize for the past 8 years of bad medical advice. No doctor will feel todays nausea and dizziness, though a kind stranger did help me to sit when I was walking to my metro stop and lost my balance.

We have a 2 week plan right now: July 9th is the heart stress test. The 10th is the heart echo, the 11th is the manometry. The esophagus x-ray is July 16th. I dont need the rheumy for any of these tests!

Hugs!

Gabrielle

Yes, I am still on plaquenil! Thabk goodness.

Hi gabpaul,

You live near one of the worlds best and most respected physicians for
connective tissue disorders. Dr. Claire Francomano
Phone: 443-849-3131
Fax: 443-849-2919
Address: 6701 North Charles St., Ste. 2326, Baltimore, MD 21204

Much of this is a clinical diagnosis, you don't need genetic testing unless you need or want and best of all she will write up an explanation and care plan for your dr's. She is a lovely compassionate woman, very thorough and no nonsense regarding the pain and frustration living and dealing with this condition and protective of her patients. She leaves no stone unturned, never had a more thorough and non hurried consultation and evaluation. Made all the difference for us.

Best to you.

Thank yo for the referral! I am still pained and stressed by my rheumy. Not only did she take back the diagnosis, she questioned my gastroenterologist and my cardiologist, my high cholesterol, and high blood pressure. How she can deny readings is beyond me. She also compared me to her other patients who are "sick." She said, "The patients I see are truly sick."

It is like she was a different person from my first visit. She was so sympathetic at that visit. I thought I had found "the one."

Right now, like every night, I end a day of nausea, dysphagia, dizziness, and chest pain with extreme GERD, a belly ache and upper arms that are killing. Is this MCTD? I don't know, but I feel like my doctors should hear me.

Thanks everyone.