Confused-Awaiting test results

Hello, this is my first post here. I am a health care practioner (on disability after 23 years) but I am totally confused. I have been "sickly" all of my life. My parents were told all of my ills were "all in her head". Then as a young adult I was told the same thing. When I was in my 30's I got my first pos. ana result but recieved no treatment...only told my "rash" was not contagious so I could go back to work in the NICU. I have periodic spells of confusion, falls and memory loss. I also have severe peripheral neruopathy, anti cardiolipin antibody syndrome, advanced cerebral atrophy, restless legs, asthma, migraines, fibro, osteoarthritis, GERD, dry eyes and mouth and skin, hair loss, brittle teeth (lost 8 upper teeth to breakage), rashes and itching, sun sensitivity, ulcers on my toes and debiliting fatigue. I almost died 5 years ago due to "dead gut syndrome" and had 3 major abdominal surgeries in 9 months. I have had diarrhea all my life. I am also currently having chemo for a relapse of non Hodgkin's lymphoma (MALT) I recently changed rheumatologists and she thinks that I may have MCTD. Obviously there must be something to tie this mess together. I want to be prepared for my next dr visit when I get my test results (for raynaud's, scleroderma and lupus).

Any insights are most welcome.

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It would be a good idea for you to go to a scleroderma clinic and/or a really good hospital like Mayo that can diagnose you properly and get you on a treatment plan.

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Do you have RNP (U1RNP) antibodies? This is what is found in those with MCTD and it's one of the criteria for that diagnosis. I am MCTD. What state do you live in? Do you also have a good GI doc?

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I live in upsate SC near Greenville. I'm having to change GI because of insurance and it takes forever around here to get a new patient appt. with a specialist. I think my duodenal ulcer is acting up as well as reflux. Last night I had chest pain and could hardly breathe...when this first started happening I thought I was having a heart attack. None of my multitude of docs have ever really taken me seriously in spite of my numerous systems involvement. Until now. My new rheumatologist seems to want answers. I'm trying to "study up" so that I can ask pertinent questions next appt. I was not really expecting her to order every blood test in the book but she did. She also wants me to have a spinal tap and 3 day EEG. Today I'm having cramps in my feet so severe that my toes are completely tucked under.

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Definitely ask for them to order the U1RNP antibody test. I think you should have headed to the E.R. last night. If you have issues again today head that way. Can you travel out of state with your insurance? Just something to keep in mind in case you don't have any luck with your doc. Are they doing the spinal tap to look for antibodies? Is your atropy related to a neurodegenerative process? If you're having severe cramps you may have an electrolyte imbalance, etc. If you're feeling so rotten go to the E.R........pretty please :) It's not like you're going to whine about a sore throat. Sounds like something serious may be going on. Just to be safe.

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Your situation is waving red flags in front of my eyes.Have you been tested for Lyme?It is often the cause of SD and other chronic diseases.If you have a CD57-56-16 test done and your numbers are low it can mean only 2 things,Lyme or Cancer.Since you have been sick so long and you live in a place known for heavy duty Lyme you really should get tested.If the CD57 numbers come back low then you should get tested by one of the 3 reliable labs in the U.S to know exactly what you are fighting.A couple other warning sighns of Lyme are rotator cuff,carpal tunnel and severe neck pain.Any biting insect can pass along Lyme or some of it's co-infections ,similarly you can have a co-infection without the Lyme but ticks are the most known for passing it olong.You may nevr have even seen a tick because some of them just look like a grain of sand.I have SD and Lyme with co-infections of micoplasma Pneumonia,mycoplasma Fermentans and Bartonella. My sister has Lupus,Mixed Connective Tissue Disease and Lyme.We are both fine now but it sure is hard to find a good doctor and a lot of timeto get well again. t-talk.html

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Thanks Christine and kacklebird (love your name!), I appreciate all input. Kacklebird, I considered going to the ER last night but having worked in the ER's around here just didn't want to...promise I will go if it happens again. I have had severe throat and chest pain before that turned out to be reflux. Last night our neighborhood had it's annual Low Country Boil and my husband is president of the HOA...if I had gone to get him it would have created such a stir!!! I went for a few minutes but didn't stay long..just to say hello and eat a couple of boiled shrimp. Everyone had been commenting on how great I looked (in spite of chemo this week) so I really didn't want to get into my health with the whole neighborhood. Health care professionals are the worst patients!

I feel better today but the toes are doing their imitation of the Wicked Witch of the West...they are curling under trying to touch my heels I think :) Seems it's always something so I can't afford to get too worked up.

Christine, I have been checked for Lyme Disease but the test was done locally. I did not grow up in a Lyme area (central Florida) so I've had whatever I've got since way before any tick bites...that said we DO have a lot of ticks around here. I have a heavily wooded lot and have to wear a hat when I go into the back yard or I'm sure to have a tick in my hair when I go back inside. I've long since quit hiking and working in the yard but I do like to sit on my deck occasionally. I have to wear Deep Woods Off anytime I go into my back yard. I'll request a new Lyme test and have it sent to one of the labs out west. All of my cancer blood work and pathology are sent to a lab in New Mexico. Great to hear about you and your me a small ray of hope.

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It seems to me, that with a positive ANA test, someone should have done some specific antibody tests by now to try to try to figure out which antibody is making your ANA positive. You should try to get a copy of the antibody tests done by your most recent rheumatologist. Like Kacklebird, I am thinking that positive RNP antibodies may be what's making the rheumatologist speak of Mixed Connective Tissue Disease. And that can have some of the same features as scleroderma.

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I am so sorry you are going through so much, just wanted to send you a (((HUG))). Take care and be good to yourself...Kymmie

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Chest pain is considered an Emergency, and I think you should definitely go to have it checked out. Better safe than sorry. You're too important to the people who love you not to have it looked after.

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