New to the site, could use some input as i am going crazy with doctors

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New Member

Date Joined Oct 2009
Total Posts : 4
   Posted 10/9/2009 11:46 AM (GMT -6)   
Hello! I just dont know where to start, I have a Positive ANA and RNP have for over 4 years....This is my question first my doctors tells me i have this and that, and yes he wants to say Lupus but he's not sure as i dont have a rash on my face and only a few things show it to be that but not everything so as he puts it I/MY BODY IS SITTING ON THE BENCH WAITING TO FALL BUT HASN'T DONE IT YET. and see this just confuses me more because what more does he want a organ to stop working or death.??So I ask positive ana and rnp for over 4 yrs and body ahurts and I have pain,brain problems, and so much more, not enough time and power to write? oh yes sorry I have ET as well--high platelet and I do chemo for that as well, any help would be nice and i would be so thankful. thanks again for your time

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 10/9/2009 8:19 PM (GMT -6)   
Hi dogs,
Sorry you are having such a hard time. Lots of us are in dx limbo. We've been diagnosed and then undiagnosed, etc. We are finding that it is a blessing to NOT have the word Lupus in your medical records. It can be tricky to get insurance. Many of us feel that as long as the doctor is treating the symptoms, he/she is doing his/her job. *sighhhhh* I felt much better, once I realized that they are often just trying to keep your medical records from being a curse to you.

I hope you've found the Lupus Resources thread at the top of the forum. There are a couple of links at the end of my signature that may be helpful.


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

New Member

Date Joined Oct 2009
Total Posts : 4
   Posted 10/9/2009 8:51 PM (GMT -6)   
Hello! Rosie, yes, limbo, isn't any fun, but because I have other issues like the ET, hypercalcema(?sp), asthma, umctd, pernicious anemia,depression, anxiety, and i keep getting pleurisy of the lung and heart, and fibromyalgia,gerd,major sleep issues,(whatever they call that) - it makes me what answers not just a list of things I want to know why and what is the cause of this or some of these are. I am 40 yrs old.
I worked all my life and now i have been out of work for 2yrs and counting, trying for disability -- sick of staying home, but it hurts to much to do much and if i can work i can't do it to long without getting sleepy, and needing a nap.

thank you for your blessing..

Veteran Member

Date Joined Oct 2004
Total Posts : 2244
   Posted 10/9/2009 8:53 PM (GMT -6)   
We all understand how frustrating it is to get a straight answer from the docs. Sometimes I think they hesitate before dx lupus to make 100% certain that's what it is. In my opinion it doesn't really matter what it is (sle, uctd, etc) the important thing is the treatment plan your doctor has you on. Yes a DX is important but sometimes we get so wrapped up in the name of what we have we don't think about anything else. For me I wanted a name so I knew what I was up against. But all in all my meds were the same when my dx was uctd and a year later when I was dx with sle, and more meds have been added as my lupus has progressed over the years.

What kind of treatment plan are you on?
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Tramadol (as needed) and magic mouthwash (for mouth sores)

New Member

Date Joined Oct 2009
Total Posts : 4
   Posted 10/9/2009 11:02 PM (GMT -6)   
Hello! Stacie; lyrica , tramadol, trazondone, axanax advair, singulair,effexor topamax protonix propoxyphene```` hu,(CHEMO DRuGS)`````` Potassium``````` Percocet `````water pills,````````brethine,``````ambien```````` seroquel when needed.. I also have to take vit. D and 2 tabs of folic acid and injections of b-12 every two weeks again it was monthly ,docs move it to every two weeks again, which i do mine own.THIS is one cocktail everyday, enough it hurts my heart to fill my pill container every week.

thanks hope to hear back soon thank you

Regular Member

Date Joined Sep 2009
Total Posts : 31
   Posted 10/10/2009 5:05 AM (GMT -6)   
Hi. Lupus and most autoimmune are sneaky mean dogs.They lead doctors on a merrygoround with symptoms and positive lab work one week, the next they are different symptoms,different lab results. I haven't looked in a while,but there are 11 criteria,of which 8 need to be positive for a firm dx. It's really hard to get all eight to sit still at the same time,like I said it is sneaky. I understand you need a name to put to everything,I did too,but everyone is right-it's the treatment you are receiving that is important.Be sure to go to a good rheumatoligist,who deals with autoimmune diseases all the time,you can do this by just calling their office and asking,before you make an appointment.Good luck, God Bless, Namaste Raven1954
sle since 1986, cerebritis,pre diabetic, peripheral neuropathy,mvp cataracts,degenerative disc dx. liver failure due to tylenol for to long,Meds: prednisone,inderal. synthroid,tegretol,nasonex,phenergan,dalmane,valium for fibromyl. dilaudid q8 for pain,cytoxin iv every 6 months,asa daily,albuteral inhaler,frequent antibiotics. Learning to live a differant life now, cpap for sleep apnea.Life is not a journey to the grave with the intention of arriving safely,in a pretty and well preserved body,but rather to skid in broadside,thoroughly used up,totally worn out and loudly proclaiming-WOW,what a ride!!!

New Member

Date Joined Oct 2009
Total Posts : 4
   Posted 10/10/2009 7:12 AM (GMT -6)   
Thank you, yes I have a great doctor, my lab work have been positive for 4 years, never once did i have a negative and yes i do have the criteria for the lupus, except i have a high platelet so that is one thing that make them, think even harder to what is going on, I have a growth on my right kidney that was getting pretty big then stopped growing, and is just staying at the same size now 6 months, one behind my knee which gives me problems walking and bending, that one has stayed the same size, and i had my women parts out because of growths and bleeding somewhere inside and had to fix that problem.. I am just falling apart at the age of 41. Its funny never did any kinds of drugs before all this, now i live on them, and i don't drink and i feel like starting that up just to get away sometimes, I am on 17 pills a day plus my shots of b12 every 2 weeks, I hate bed time because that when I take most of my pills and it kills me, I just get to the point of crying. so for running on, I dislike all of this, i don't feel like i did a few years ago and it is eating away at me slowly. thanks again

Veteran Member

Date Joined Jul 2009
Total Posts : 4796
   Posted 10/10/2009 4:49 PM (GMT -6)   
Hi, I am sorry you are still in dx limbo. I have been there and it is frustrating. Lots of
bloodwork, same results and still no answers. My first diagnosis was UCTD but after a
year and a half, my rheumy diagnosed me with MCTD. Once I recieved the new dx, I really
didn't feel differantly physically. Emotionally it made it real for me.

MCTD is the ony connective tissue disease that can be confirmed with only one antibody,
RNP. I did have a skin biopsy to confirm scleroderma, and I get rashes on my chest and
neck area.

You are lucky to have a great doctor, I do too. There are so many others looking to find
one. My rhuemy put me on Methotrexate. In the past I have done a prednisone taper,
was on Imuran and Plaquenil.

I try to eliminate as much stress as I can, because stress always results with more pain.
Soaking in a hot bath relaxes my muscles and feels good. I do gentle stretching and
I walk daily to help with the energy.

Like you, I also have fibromyalgia and deal with insomnia. When I am flaring I take
Flexeril. I also take 50mg of Savella 2x daily. It has helped some with the all over

Dealing with illness is a challenge to say the least, but I try to take it one day at a time,
otherwise it is too overwhelming.

I am hoping you find the relief that you need and that you will get your dx soon!


MCTD, Fibromyalgia, Raynauds, Osteoarthritis, Osteoporosis, Degenerative 
 Disc Disease, Hypertension, Migraines and Pseudothrombocytopenia MEDS: Methotrexate, Savella,Flexeril,Diltiazem, Boniva, Vitamins 

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